The proceedings are
reported in the language in which they were spoken in the
committee. In addition, a transcription of the simultaneous
interpretation is included. Where contributors have supplied
corrections to their evidence, these are noted in the
transcript.
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Dechreuodd y cyfarfod am 09:02.
The meeting began at 09:02.
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Cyflwyniad,
Ymddiheuriadau, Dirprwyon a Datgan Buddiannau
Introductions, Apologies, Substitutions and Declarations of
Interest
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[1]
Dai Lloyd: Bore da i bawb a chroeso i gyfarfod diweddaraf y
Pwyllgor Iechyd, Gofal Cymdeithasol a Chwaraeon yma yn y Cynulliad.
A gaf i estyn croeso i’n tystion yn y lle cyntaf? Mwy amdanyn
nhw yn y man. A hefyd hoffwn estyn croeso i’m cyd-Aelodau.
Gallaf egluro ymhellach fod y cyfarfod yma yn ddwyieithog. Gellir
defnyddio clustffonau i glywed cyfieithu ar y pryd o’r
Gymraeg i’r Saesneg ar sianel 1 neu i glywed cyfraniadau yn
yr iaith wreiddiol yn well ar sianel 2. A allaf atgoffa pawb i
ddiffodd eu ffonau symudol ac unrhyw offer electronig arall, achos
mae’n gallu ymyrryd efo’r offer darlledu, y darlledu
byd-eang? Gallaf ymhellach hysbysu pobl nad ydym yn disgwyl
tân o unrhyw fath y bore yma, felly os bydd y larwm yn
seinio, dylid dilyn cyfarwyddiadau’r tywyswyr a gadael y lle
yn ddiogel os bydd angen.
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Dai Lloyd: Good morning, everyone and
welcome to this latest meeting of the Health, Social Care and Sport
Committee here in the Assembly. May I extend a welcome to our
witnesses, first of all? We’ll say a little more about them a
little later on. I would also like to extend a welcome to my fellow
Members. I can further explain that this meeting is bilingual.
Headphones can be used for interpretation from Welsh to English on
channel 1 or for amplification of the verbatim contributions on
channel 2. May I also remind everyone to turn off their mobile
phones and any other electronic equipment, because it can interfere
with the broadcasting equipment? That’s international, of
course. I also inform people that we don’t expect to hear a
fire alarm this morning. So, if it does sound, you should follow
the instructions of the ushers and leave this place safely should
that be necessary.
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09:03
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Ymchwiliad i
Strategaeth Genedlaethol Ddrafft Llywodraeth Cymru ar
Ddementia—Sesiwn Dystiolaeth 1—Y Gymdeithas
Alzheimer’s
Inquiry into the Welsh
Government’s Draft National Dementia Strategy—Evidence
Session 1—The Alzheimer's Society
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[2]
Dai Lloyd: Symudwn ymlaen i eitem 2 ac ymchwiliad y
pwyllgor yma i strategaeth ddrafft genedlaethol Llywodraeth Cymru
ar ddementia. Hon ydy’r sesiwn gyntaf o dystiolaeth a’r
tystion cyntaf yw’r Gymdeithas Alzheimer’s. Felly,
mae’n bleser i mi groesawu Sue Phelps, cyfarwyddwr y
Gymdeithas Alzheimer’s yng Nghymru a hefyd Dr Ed Bridges,
rheolwr materion allanol y Gymdeithas Alzheimer’s yma yng
Nghymru. Diolch yn fawr i chi am eich presenoldeb a hefyd diolch yn
fawr ichi am eich tystiolaeth ysgrifenedig. Mae Aelodau, yn
naturiol, wedi darllen honno i gyd mewn manylder ac wedyn, fel sydd
yn arfer i ni, fe awn ni’n syth i’r cwestiynau sydd
wedi eu clustnodi eisoes. Mae’r cwestiynau cyntaf o dan law
Julie Morgan.
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Dai Lloyd: Moving on to item 2 and this
committee’s inquiry into the Welsh Government’s draft
national dementia strategy. This is the first evidence session and
the first witnesses are from the Alzheimer's Society. So, it is my
pleasure to welcome Sue Phelps, the director of the Alzheimer's
Society in Wales and also Dr Ed Bridges, the external affairs
manager for the Alzheimer's Society in Wales. Thank you very much
for attending and thank you for your written evidence. Members,
naturally, will have read all of that in detail and then, as is our
usual practice, we’ll move to our questions, which have been
already allocated. The first questions are from Julie
Morgan.
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[3]
Julie Morgan: Bore da. I think everybody who’s given
evidence says how important it is to involve dementia sufferers,
their carers and families in the design of the services and how the
services develop. Could you comment on how you see that in the
draft strategy?
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[4]
Ms Phelps: It is, absolutely. For us, it’s fundamental
that, throughout the consultation, we listen to the people affected
by dementia living in Wales. And actually, when the idea of there
being a national dementia strategy for Wales was first
mooted—which we obviously were campaigning for and lobbying
for and it’s fantastic news as far as we’re concerned
as an organisation—but one of the things that we said was
vital was that, from the beginning, leading up to the consultation
and then throughout the consultation and ongoing afterwards, we try
and capture the views of those living with dementia in Wales. So,
Alzheimer’s Society along with another organisation, DEEP,
have been leading those consultation meetings funded by Welsh
Government. So, we’re really grateful for that funding to be
able to do that thorough consultation, trying to reach people
across Wales. So, we’ve had focus groups meeting prior to the
draft coming out for consultation. Those focus groups are meeting
again now, as we speak. There have already been—I think three
have happened to date and there are some more this week, and they
will continue to meet until the end of the consultation period. But
then what we’re hoping is that those people who have been
involved in the consultation groups will continue to engage with us
as the implementation rolls out. Something that Ed and I were
talking about as something to suggest going forward is that the
people that we’ve connected with through the groups, those
people who are willing to do so, could possibly link with local
health boards and strategic planning boards going forward, where
the delivery will fit, so that they can see that their input is fed
through and continues to influence delivery. Because that, for me,
is the crucial thing now: once we’ve got the strategy agreed,
the implementation is going to be key.
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[5]
Julie Morgan: And have you found that people are willing to
engage? Have you had a good involvement?
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[6]
Ms Phelps: We have had some excellent response, and
actually, what’s gratifying for us as an organisation is that
they’re people that we don’t necessarily know. So,
we’re reaching people who are not known to the
Alzheimer’s Society, which is good for us, and people who are
living—some in very rural Wales, some in more urban
environments. So, we’re capturing a really good spread.
Actually, there are people who’ve been diagnosed across the
age spectrum as well—so, younger people with early-onset
dementia to the older person—but their carers and families
and professionals who are supporting them as well. They’re
giving us feedback as to what they feel is needed.
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[7]
Julie Morgan: So, you feel you’ve got a representative
group who are—
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[8]
Ms Phelps: Yes.
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[9]
Dr Bridges: And if I can just add, it’s not just about
the consultation events. I mean, those have been fantastic and a
really good in-depth opportunity to explore some of the issues, but
we’ve also done various online consultations. After the draft
strategy was published, we developed a very short online survey to
elicit people’s views. I think within the first week of that
we’d already had coming up to 300 responses. So, there has
been a lot of engagement, not just from people with dementia but
also families and carers as well. I think their voices have been
reflected quite well in the draft document that we have today and
during the current phase of consultation, I think there will some
additional comments and I hope and expect that those will be
reflected in the final document as well.
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[10]
Julie Morgan: And have you been able to ensure—and how
do you think the strategy will ensure—that people from
particular groups, ethnic minority groups, LGBT groups—how do
you think the strategy will cope in reaching those people?
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[11]
Ms Phelps: That obviously is a challenge. What we’re
hoping—. Obviously, the invitation to the focus groups is
extended to everybody and it’s those people—. So,
they’ve been widely promoted and we are reaching people, but
more focused activity could happen. We’ve got a group of
people that we met with before Christmas from the BME community in
Butetown, so we can go back to that group of people again to
capture their views. I think we have to be a bit more selective and
be more proactive in going out, rather than expecting them to come
to the focus groups. So, yes, that is definitely on our agenda.
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[12]
Dr Bridges: I think, just to reiterate what Sue said
earlier, once we get past the final draft of the strategy and into
the implementation, there’s something that health boards need
to be doing as well about trying to make sure they’re
reflecting the widest possible spectrum.
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[13]
Julie Morgan: Do you think the draft strategy has got enough
in it to reach out to those groups?
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[14]
Dr Bridges: I think there’s always more that can be
done and I think that probably is an area where we would like to
see a bit more meat on the bone within the draft strategy. There
has been a lot of input and a very wide range of input into the
consultation events, but I think, hand on heart, we would probably
say that, when it comes to, particularly, minority perspectives, it
would be good to see more being reflected, not just in the
consultation events but in the document itself.
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[15]
Julie Morgan: Thank you. Then, the final question, really,
is: what do you think about the actions in the strategy about
services for people whose first language is Welsh?
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[16]
Dr Bridges: I think it’s fair to say we were very
pleasantly surprised by just how far the draft strategy went in
relation to the Welsh language. It is something that is
particularly important for people living with dementia, obviously.
First-language Welsh speakers may lose their second language,
English, and so it isn’t just about patient choice;
it’s actually about clinical need. And I think seeing that
reflected in the strategy was something that we took a great deal
of heart from. It’s something that we felt was really
important, to reflect that clinical need. I think that is probably
an area where we need to do a lot more work in the years ahead, and
I think, over the lifetime of the strategy, that is going to be a
really key element of this to see can we do more for first-language
Welsh speakers when it comes to diagnosis, first of all, but then
the support that comes afterwards. I don’t think at the
moment there is enough capacity in the system to diagnose and
support people whose first language is Welsh. I’m sure
that’s something that in your later sessions you can explore
with the psychiatrists. But I think the direction of travel here is
really good, to see there is an understanding of the problem. There
is more that needs to happen from health boards to make sure that
the support is there for diagnosis, and there’s more that
service providers like us need to do when it comes to actually
supporting people whose first language is Welsh. But understanding
the problem is a vital first part, and I think, up until now, we
haven’t done that. We haven’t reflected the fact that,
for people with dementia whose first language is Welsh, having that
support in their first language is a clinical need. So, seeing
those words in here was something that we very strongly
welcome.
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[17]
Ms Phelps: I think on that, as well, we have got—. One
of the things that Alzheimer’s Society has pledged to do is
to try and identify some notable practice to insert in the final
strategy, and there is—the one that comes to mind is some
work that’s happening in Cwm Taf, one of the hospitals in
Pontypridd—I think it’s Pontypridd—where a ward
is Welsh language speaking as well as being dementia friendly. So,
I think if we can capture what’s happening in that particular
hospital and replicate that would be a really good addition.
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[18]
Dai Lloyd: Jayne, you had a question on this point.
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[19]
Jayne Bryant: Yes, just a quick question. Good morning. I
was just wondering: as well as being sensitive to those people
whose first language is Welsh, do you think enough is being done
for those people whose first language is neither Welsh nor
English?
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[20]
Ms Phelps: I’m not aware that it is, no. I think
it’s an area that we need to explore, yes. Because there are
significant populations now across Wales, aren’t there, with
Eastern European languages and others. Alzheimer’s Society
produces information and resource in other languages, but, in terms
of delivering diagnosis and responding to clinical need, it’s
probably something we need to explore more.
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[21]
Dr Bridges: As well as there being a role for the health
service and health boards and social care, one of the things that
has consistently come up in the consultation events has been about
the importance for people affected by dementia of peer support,
and, actually, I think when it comes to minority languages, for
example, there’s a really big role there for looking at how
we can strengthen peer support within those communities. As well as
making sure that there’s state provision, actually, there is
also more that we can do to make sure that there is really strong
peer support, so that people within their own communities can talk
to other people who’ve gone through similar challenges and
problems.
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[22]
Dai Lloyd: Okay. Julie, question 4.
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[23]
Julie Morgan: Yes, the final question, really. You did refer to the
fact that, in your groups, you have people from rural areas, but
you do comment on the lack of specifics about how you reach out to
people in rural areas in the draft strategy. Could you expand on
that?
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[24]
Dr Bridges: So, last year, we brought out a very short
report looking at dementia in rural settings, and, of the 45,000
people in Wales living with dementia, we estimated that at least
17,000 of those are in rural parts of Wales. I actually think
probably the figure is higher than that. At the moment we simply
don’t know enough about the problem to be able to do a great
deal more in this strategy than what it is there. A lot more is
needed in terms of data collection so we can see where the
particular hotspots are within rural areas of dementia and what the
likely demographic changes are going to be that will have an effect
on that. What we wanted to see in the strategy was an
acknowledgement that there is a significant problem around rural
dementia in Wales, and that people affected by dementia in rural
areas face serious and very specific problems. I know this
committee’s going to be doing a piece of work shortly on
loneliness and isolation. There’s clearly a big overlap
there, not just for the people themselves but also for families and
carers and how to support them.
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09:15
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[25]
So, we have seen in the draft strategy an acknowledgement and an
understanding of the fact that rural dementia is an issue. I think
there is a big role for Welsh Government in terms of making sure
that we generate more data so that we can better understand that
problem, and there’s a role for us and others to look at how
we can improve services and support—you can make better use
of technology, which the document also talks about. I think, at
this stage, it’s unrealistic to expect great swathes of
policy until we can properly understand the problem. But the fact
that it is in there, that there’s that acknowledgement, I
think is significant. I think, over the first three years of the
strategy, I’d really like to see more being done so that we
can better understand where in rural areas the problems are, what
those problems consist of, and how, on a partnership level, some of
those challenges can be addressed.
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[26]
Ms Phelps: I think, as well, linked to that is the work
that’s happening around, essentially, the overarching intent
for Wales to become a dementia-friendly nation and the work
happening at a grass-roots level in the community—so,
creating dementia-friendly communities and raising that public
awareness and understanding. That will help us capture that
information, because, hopefully, people living with dementia will
be involved in that social movement, if you like, to create
dementia-friendly communities. So, we can then gather from those
people living in rural communities what it means to them—what
does a dementia-friendly or dementia-supportive community mean to
them, what would make a difference. We can start gathering that
information through that strand of work, which, obviously, is
referenced in the strategy.
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[27]
Dai Lloyd: Gan droi yn awr i gysidro rhannau o’r
strategaeth sy’n ymwneud â diagnosis, gofal a
chefnogaeth, mae gan Rhun gwestiwn.
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Dai Lloyd: We’ll move on now to
consider the parts of the strategy relating to diagnosis, care and
support, and Rhun has a question on this.
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[28]
Rhun ap Iorwerth:
Rwy’n meddwl bod yna gytundeb
bod sicrhau llwybrau gofal clir yn rhywbeth pwysig yn y maes yma.
Beth ydych chi’n meddwl ydy’r prif rwystrau i’r
gwaith o integreiddio nid yn unig iechyd a gofal cymdeithasol y
wladwriaeth, ond y trydydd sector, y sector breifat ac
ati?
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Rhun ap Iorwerth: I think that there is
an agreement that ensuring clear care pathways is very important in
this particular area. What do you think the main barriers might be
to the work of integrating not only health and social care, but the
third sector, the independent sector and private sectors?
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[29]
Ms Phelps: Right—barriers. I’m coming at this
because it’s fresh in my mind, and a particular piece of work
that we’re involved in at the moment; I think commissioning
plays a big role—commissioning of third sector, so,
commissioning specialist organisations that understand dementia.
There needs to be better collaboration, I think, between health,
social care, and then the third sector to understand what is needed
and then to commission services that are joined up. We’ve got
instances where that’s not necessarily happening.
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[30]
I think the Act—obviously, we’ve got the Act
now—would lend itself to that sort of activity, but there
does seem to be a disconnect, and there are examples across Wales
where health and social care are still not quite joining up, and
then people with dementia are falling through the hoops.
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[31]
Through the consultation events, one of the key themes coming from
people, as you rightly say, is that people with dementia are
telling us that there isn’t the pathway there, that
they’re having to repeat their story on a number of occasions
to their social worker and then to their community psychiatric
nurse, and then if a third-sector organisation goes in. So, I think
we all have a responsibility—all of those agencies—to
come together and make it better. It can happen—it just needs
better communication and better collaboration.
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[32]
Rhun ap Iorwerth: There are very good examples, of course,
in parts of Wales where the collaboration is already happening and
to great effect. There’s a new development in Anglesey that
I’m really looking forward to seeing how that works now. Can
we rely on rolling out that kind of good practice, or does there
need to be a more formal, structural reconfiguration, if you like,
of the systems as they currently are in order to make sure that we
have this happening on a Wales-wide basis?
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[33]
Ms Phelps: I think it can happen if we share good practice.
I think one of our biggest issues is that we don’t actually
share where it is done well. So, let’s say we do that
better—I think that will improve things. I know there is a
lot of talk around potentially pooling resources, whether that be
pooling budgets or pooling understanding. The whole lot, I think,
needs to come together, because there is still this protection of
social care funding, of NHS funding, of third sector funding. We
need to break down those barriers and all come together. I
personally feel—and I’ve mentioned this
before—that, if we had an opportunity to review, across all
the agencies in Wales, the current spend on dementia—. So, we
know, from a report last year, that £1.4 billion is being
spent on dementia. How is it being spent? Do we know how it is
being spent and where, and is it being used to best effect? I would
suggest that, maybe, there’s an opportunity there to use
resourcing in a much better way. So, I think that something that we
could do, through the strategy, is push for—
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[34]
Rhun ap Iorwerth: So, the
strategy needs to be, if not totally prescriptive in how you secure
that pathway, but it’s got to identify where good practice
is.
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[35]
Ms Phelps: And monitor in a
much more stringent manner, I think.
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[36]
Dr Bridges: Just to add to that, if you talk to people who
are living with dementia, or are supporting people with dementia,
the frustration that they will have about things getting lost
between health and social care, or even within health and social
care, is what Sue said: having to repeat your story seven or eight
times to different people within the health system, within the
social care system. I’m sure it’s something that you
all hear in your surgeries from constituents. The answer to that
should not be a complex one. It should just be about making sure
that information, particularly about people who are living with
dementia, who are the people least able to want to have to repeat
their story time and time again—you know, making sure that
that information is shared properly and that practitioners are
aware of people’s history, background and case notes before
they go into that conversation. That is not something that should
be a difficult or technologically-challenging thing to do. But
getting that right will give people with dementia and their
families a lot more confidence in the system that their situation
is going to be understood and that they will therefore receive the
care that they need.
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[37]
Rhun ap Iorwerth:
Okay, thank you.
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[38]
Dai Lloyd: Time is marching on, and there are several
questions, okay. Lynne has got the next one.
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[39]
Lynne Neagle: Thank you. Good morning, both. My questions
are on diagnosis rates. You’ve been very clear that you
don’t think the target that the Minister has set is ambitious
enough. Can you just expand on that and say where you think we
should be in terms of targets? Because the Minister has said in
response to me that we need to be realistic, but I would like to
see us having an ambitious target. So, how do you marry up the need
to be realistic with something that really does take us
forward?
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[40]
Dr Bridges: So, diagnosis is absolutely fundamental. It is
only through getting a proper diagnosis that you can unlock the
support and services that are available to you. At the moment, we
are diagnosing 51 per cent of people with dementia. Now, we
wouldn’t accept a diagnosis rate of 50 per cent for cancer or
other major areas of disease, and we should not accept it for
dementia, because that means that half of the people living with
dementia in Wales are not getting the support and the services that
they need. Wales lags behind other parts of the UK. There are
various reasons for that, but I think we have consistently pointed
to Northern Ireland and said, ‘Well, they are diagnosing 64
per cent of people with dementia’. If you look at
demographics, if you look at geography—we’ve talked
about rurality already this morning—they are in a comparable
situation to us. So, what is it that Northern Ireland is doing that
Wales is not doing that is therefore allowing them to hit a 15 per
cent, or thereabouts, higher diagnosis rate than us? I absolutely
take on board that we have to set realistic targets and we
don’t want to set ourselves up to fail, but, under the 3 per
cent per year improvement that the strategy sets out, by the end of
the lifetime of the dementia strategy, we would just about be where
Northern Ireland are now, and I don’t think that that is
sufficiently challenging and sufficiently ambitious for us. So, if
we were to be closer to a 4 per cent target per year, I think
that’s something that we would feel more comfortable with,
and that is, hopefully, still realistic. Of course, some of that
stuff costs money, and also—and we heard this in the
consultation events—you have to make sure that the services
and the support are there. There’s no point diagnosing people
and not giving them support. But, again, I would come back to the
comparison with cancer. You wouldn’t say to someone,
‘Well, because we think that the health system is under
stress, we won’t bother to diagnose your cancer’. We
would not accept that. We should not accept that for dementia
either.
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[41]
Lynne Neagle: Can I just ask one other question? Your
written evidence highlights a problem with the way that the Welsh
Government is counting people with early onset dementia. Can you
just expand on that?
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[42]
Ms Phelps: Go on; you’re better at that.
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[43]
Dr Bridges: So, there’s been a slight change in the
system of measurement that Welsh Government have used.
They’ve moved from a system called Delphi to a system called
the Cognitive Function and Ageing Study method to measure diagnosis
rates. There’s good reason for moving to CFAS, and it does
allow for slightly more meaningful comparisons with what happens in
England. The difficulty with it is that CFAS, because it is based
around older people, does not measure the number of people with
younger onset dementia—so, under 65—which potentially
means that the figures are 2,000-3,000 out. But also—and I
think this is the really significant thing—it’s harder
then to keep track of younger people with dementia who have very
specific and different needs. Clearly, if you are in your 50s or
60s and you are diagnosed with dementia, then that is going to have
much more of an impact in terms of your ability to work, your
ability to care for a family, to pay a mortgage, all the rest of
it. So, we don’t want to see those people ignored by the way
we measure statistics and left behind by the services that are
provided. So, there is understandable reason for the shift to the
different system of measurement, but that has to also come with a
commitment that we will continue to track the people with younger
onset dementia and make sure that they are provided for, because
there are really significant implications to not doing that.
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[44]
Ms Phelps: Added to that, with younger people, around the
diagnosis for somebody who does get to a GP practice or to a memory
assessment, is that often it’s misdiagnosed. So, dementia is
missed. There is still the lack of understanding that dementia can
affect somebody in their 30s, 40s, 50s. So, we’ve got lots of
people out there who don’t get the diagnosis because, as I
say, they’re diagnosed with something very different. So,
that’s an added issue.
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[45]
Dai Lloyd: Ocê. Cwestiwn nesaf, Rhun.
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Dai Lloyd: Okay. Next question,
Rhun.
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[46]
Rhun ap Iorwerth: Just a
quick word on your thoughts about making more primary care settings
dementia friendly, because that’s quite an important part of
that early diagnosis process.
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[47]
Ms Phelps: Again, in terms of notable practice, there is an
example I know—just one that comes to mind because it’s
recent—in Cowbridge, where they’re looking to make
their primary care practice dementia friendly. So, at the moment,
we’ve got the GP Wales Mental Health in Primary Care
Network training that can be rolled out,
and I think, at the moment, there’s around a 50 per cent
take-up around GP surgeries. So, we would be actively encouraging
GP surgeries for there to be 100 per cent at some point, because
that is a programme for the whole of the GP practice to become
dementia friendly—that’s from the receptionist right
through to the district nurses and the GPs themselves. That can be
delivered in two hours within protected learning time, so that
there is a resource that we should be pushing forward. So,
it’s about the wider understanding of not penalising people
for not turning up to appointments, for example. Somebody with
dementia could forget their appointment, so it’s being aware
that perhaps a phone call might help there. Where you haven’t
got a voice saying, ‘Can you come through to the doctor, Mrs
Jones’, but you have to rely on a screen, that is not
dementia friendly. So, it’s lots of practical things that can
be done relatively easily to make the practice dementia friendly.
So, I think that can be something that can be achieved.
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[48]
Dr Bridges: Because, although it may not be the dementia that has
brought someone to the GP surgery or the hospital, it may well be
the dementia that stops them getting the care and the support that
they need. So, trying to reduce the likelihood of that happening
has to be critical if we’re to give the person effective
care, and also make sure that it works from a GP point of view as
well and that they are able to provide that.
|
|
[49]
Ms Phelps: And I think, for me, one of the things that’s
missing in the consultation—it sort of links with this but it
goes all the way through all of the issues—is that
we’ve got a group of people—. So, a third of people
living with dementia in Wales—well a third of people living
with dementia per se—live on their own. This is pertinent to
GPs—somebody who hasn’t got a carer to prompt them and
support them to go to the GP practice may not get there, and
they’ll be excluded from the diagnosis and everything
that’s available because they’re not getting that
support. There isn’t enough reference to people living on
their own. Lots of reference to carers, and that’s obviously
crucial, but we do need to recognise those people who are living on
their own, and what we can do to make the strategy live and breathe
for those people.
|
|
[50]
Dai Lloyd: Fine. A couple of quick points from Lynne.
|
|
[51]
Lynne Neagle: The pledge to give everybody a support worker when
they’re newly diagnosed is very welcome, but currently that
is 32 for the whole of Wales. You’ve expressed concerns that
that’s not enough. How many do you think we need? And also,
do you think there’s a gap then, because it’s newly
diagnosed, for people who are living with dementia, which could be
for many years, as you know?
|
|
09:30
|
|
[52]
Dr Bridges: I had a feeling you might ask a question about
support workers. I know it’s something that you’ve
raised consistently, and, absolutely, we know that access to a
support worker as that first line of contact, that first person who
can signpost and direct people towards services, is absolutely
critical. It’s come up in the consultation as something that
people strongly value. As you say, at the moment, there’s one
dementia support worker for every two GP clusters in Wales, so
that’s 32 DSWs to support 20,000 people with a diagnosis of
dementia, which is clearly insufficient. I think if we are serious
not just about providing access to a DSW to every person with
dementia, but also increasing diagnosis rates, we probably need to
be looking at certainly five times that number, and probably coming
on for more like 10 times that number. But we really need to look
at the workload of DSWs and the number of people we’re
diagnosing.
|
|
[53]
But I cannot stress strongly enough just how important the support
worker role is, not just to the person with dementia, but,
actually, if you look at what they’re able to do in terms of
signposting and support and reassurance, they prevent people with
dementia from potentially going into more costly parts of the
system—going to their GP surgeries or ending up in A&E.
So, it is a shrewd investment to have support workers.
|
|
[54]
The other thing that I think is just worth stressing is, at the
moment, support workers are delivered via health boards, so that
means that you have seven different job descriptions for DSWs,
which, in some ways, is fine, because there are going to be
different challenges in different areas, but if you want to deliver
that role consistently, I think there is something about looking at
the existing models, seeing what works well and perhaps coming up
with a good practice template for what the job description of a DSW
looks like.
|
|
[55]
Ms Phelps: I think, linked to that, for me, what is crucial
is looking at the current Welsh Government spend that’s gone
to local health boards to deliver the key support worker role. Some
of the local health boards have kept that money in-house, which is
their prerogative, while others have come out to commission other
organisations. So, I think that current spend does need to be
explored. Is it being used for the purpose for which it was given?
I would argue, working on the ground, our services are seeing that
it’s not, so I think we need to look at that. And, if there
is any additional funding coming from Welsh Government to prop up
and increase the key support worker role, we need to make sure that
it’s delivered in the way that it’s intended, to have
that effect.
|
|
[56]
Lynne Neagle: Thanks. Just quickly on respite, do you
support the proposal that a national model for respite should be
looked at by the Welsh Government?
|
|
[57]
Ms Phelps: Respite has come up consistently in our groups.
People with dementia and their carers and families are
saying—. It’s not just respite in the traditional
sense, it’s looking at different ways of providing that
respite. So, somebody doesn’t necessarily have to go into a
residential care home; we could look at delivering respite in that
individual’s home to avoid disruption and disorientation, et
cetera. So, exploring better ways. And age-appropriate respite as
well—those younger people with dementia are telling us that
that needs to be taken into consideration.
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|
[58]
Dr Bridges: But, yes, we’d absolutely—
|
|
[59]
Ms Phelps: Absolutely, yes, respite is a big issue.
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|
[60]
Dai Lloyd: Okay. Short questions, short answers now, really,
not that I’m aiming at anybody in particular, Angela
[Laughter.]
|
|
[61]
Ms Phelps: No pressure.
|
|
[62]
Dai Lloyd: Well, you could slide in a short one, as it were
[Laugher.]
|
|
[63]
Angela Burns: Thank you for your paper. I’m very
concerned about what happens to people with dementia when they are
admitted to hospital, because evidence, as you all know, shows that
that can actually upset somebody and set them on a path of
advancing their dementia more quickly. What do you think we could
do to try to ensure that, if somebody’s in hospital, that
stay does not adversely affect that particular condition?
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|
[64]
Dr Bridges: Twenty five per cent to 40 per cent of hospital
patients are people with dementia. And, as I said earlier, it may
not be the dementia that has brought them there, but it could well
be the dementia that stops them being treated quickly. It comes
back to what is in here about making sure that hospitals, as well
as primary care settings and care homes, are dementia-friendly
environments.
|
|
[65]
Angela Burns: But how do you make a hospital dementia
friendly?
|
|
[66]
Dr Bridges: There are infrastructure things that you can do
about making sure that there is good signage, that there is the
support around the infrastructure and people can see where they
need to go and it’s well laid out for people who may have
dementia. But also staff training and making sure that you have
clinical staff who understand the needs of people with dementia.
Again, one of the targets in here is around 75 per cent of NHS
staff having dementia training, which we strongly welcome. So,
there’s a twin track there.
|
|
[67]
Ms Phelps: For me as well, I think it’s important,
where there are carers, for carers to be able to—for the
flexibility around visiting, so that somebody with dementia can be
supported by their carer or by somebody they’re familiar with
at the times of eating, dressing and washing, et cetera. And maybe
a better use of volunteers, so using third sector organisations to
recruit, train and support volunteers to deliver that one-to-one
pastoral care on the ward so that somebody’s not presented
with a plate of food and then they’re left and it remains
uneaten—all of the stuff that we know happens—
|
|
[68]
Angela Burns: But surely it has to be a bit more than that,
because one of the things that concerns me is a lot of them will be
elderly people. Are there any projects that you know
about—I’ll try and talk really quickly, so, sorry about
this. Are there any projects that you know about there where people
try to replicate a home environment around that hospital bed in
order to try to ensure that the person feels more relaxed and,
therefore, that prevents that additional onset?
|
|
[69]
Ms Phelps: The short answer to that is ‘no’. I
do know of examples where they have tried very hard. So, for
example, around eating, there’s some work going on in Hywel
Dda, where the cutlery and crockery that are used are a colour that
can be—so, food is served on blue, I think it’s blue or
red plates. I can’t remember now—red, is it? That came
back as feedback from people with dementia; it makes it easier for
them to be able to identify that there is food there for them to
eat. So, those are the types of notable practice that we want to
start seeking and start introducing into the strategy.
|
|
[70]
Angela Burns: The other question I wanted to very quickly
ask you was—and I’ve seen this gap in all the evidence
that we’ve had—about patients who have mental health
issues, because having a mental health issue is not the same as
having dementia. You identify protected groups, and so on and so
forth, who need extra help or consideration, but there’s no
mention of people who might be psychotic or have any other mental
health issue who then start getting dementia. Could you just make a
comment on that?
|
|
[71]
Ms Phelps: That’s a good point.
|
|
[72]
Dr Bridges: I think it is. I think that might be something
where we may send in an additional briefing note. We can perhaps
tease some of that out in a bit more detail.
|
|
[73]
Angela Burns: I’d be very grateful, because I think
it’s a glaring absence in all the—
|
|
[74]
Dr Bridges: Very happy to.
|
|
[75]
Ms Phelps: You’re right, it is. Also, there's passing
reference to people with learning disabilities, for example. We
know that 50 per cent of people with Down’s syndrome will
develop Alzheimer’s disease, so something in there around
that group of people—
|
|
[76]
Angela Burns: I think that’d be really useful. Thank
you.
|
|
[77]
Dai Lloyd: Great, but not taking away from your excellent
written evidence.
|
|
[78]
Angela Burns: It’s good evidence.
|
|
[79]
Dai Lloyd: Right, Jayne, antipsychotic medicines.
|
|
[80]
Jayne Bryant: Thank you, Chair.
|
|
[81]
Dai Lloyd: Briefly, now.
|
|
[82]
Jayne Bryant: I’ll be very brief. So, what evidence is
there that there may be inappropriate prescribing of antipsychotic
drugs to people with dementia?
|
|
[83]
Dr Bridges: This was something that the older people’s
commissioner covered in a previous report in great detail, and
it’s been talked about by the Royal College of Psychiatrists
and the Royal Pharmaceutical Society. This is something that we
know happens and is a problem. People talk about the chemical cosh
being used as a way to pacify people with dementia. It’s good
to see that it’s reflected in the document. It’s
absolutely something where we need further work and making sure
that antipsychotics are only used where absolutely necessary and
that only the lowest doses are given. So, there is more that we
need to do on it, but it is good that it is reflected in here,
because we know it is something that is of great concern to people
with dementia and families.
|
|
[84]
Ms Phelps: In terms of training and upskilling of health and
social care staff, that person-centred intervention can help to
reduce—. So, it’s linked to the training—that if
you take the time to understand the individual and provide a
person-centred support plan, and identify what’s causing,
maybe, some agitated behaviour, then rather than using an
antipsychotic, having that more person-centred intervention can
help.
|
|
[85]
Jayne Bryant: Do you think that enough is being done to
ensure that there are regular reviews of the medication to make
sure that there’s not that overuse and also so that carers,
perhaps, and individuals—as you’ve mentioned,
there’s that hole for people who live on their own, but do
you think enough is being done to explain the medication
implications and making sure that we’re not
overprescribing?
|
|
[86]
Ms Phelps: No, I don’t think there is, and I think
there’s the issue of overprescribing, but there’s also
the issue, particularly, of people living on their own—where
they are prescribed with medication, they’re not taking it,
because they haven’t got the support there to remind them to
do so. So, yes, that needs to be addressed in the strategy as
well.
|
|
[87]
Jayne Bryant: And just briefly, on the range of alternative
treatments available, you mentioned, as well, loneliness and
isolation that do hit people with dementia particularly hard, and I
know in my own constituency, in Newport, we’ve got the music
and memories group, which is great, not just for people with
dementia but also their carers. I was just wondering, because I
think the stimulation of people with dementia is crucial, could you
say a little bit more about that and alternative therapies?
|
|
[88]
Ms Phelps: I think alternative therapies absolutely have
their place, and there is research out there to indicate that. I
think the other thing as well around music and memories and those
sorts of therapeutic activities is—that, again, is where
dementia-friendly communities can lend themselves and services like
befriending that can provide that one-to-one support for people to
be able to continue with the hobbies that they’ve been used
to, or even learn something new. There is a myth that somebody with
dementia can’t learn—they can with the right support.
And I think that can go a long way to improve a person’s
physical and mental well-being, if they are supported to through
meaningful activity, absolutely. So, I think peer support
there—.
|
|
[89]
I think we’ve made reference to training for health and
social care professionals, but, actually, training, for want of a
better word, or information and education, for people who are
diagnosed and for carers—targeted carers information
programmes that can explore the use of alternative therapies and
meaningful activities et cetera would really, really help, and
would be relatively cheap to provide, if you like, or easy to
provide.
|
|
[90]
Dai Lloyd: Shall we move on to Rhun?
|
|
[91]
Cwestiwn 15.
|
Question 15.
|
|
[92]
Rhun ap
Iorwerth: Mae hwn yn benodol ynglŷn ag edrych ar ôl y rheini
sy’n edrych ar ôl y bobl sydd â dementia,
sy’n gwbl hanfodol. Rydym wedi cyfeirio at respite a
ballu yn barod, ac mae yna lawer mwy na hynny. Sut ydych chi yn
meddwl y gallai’r strategaeth fel y mae hi gael ei chryfhau
er mwyn sicrhau bod y gofalwyr eu hunain yn cael y gofal a’r
gefnogaeth y maen nhw eu hangen?
|
Rhun ap
Iorwerth: This is specifically
in relation to looking after the carers of those with dementia,
which is essential. We’ve referred to respite and so on
already, but it’s about much more than that. How do you think
that the strategy as it stands could be strengthened in order to
ensure that the carers receive the care and support that they
need?
|
|
[93]
Ms Phelps: Okay. Yes, I mean, it goes without saying that carers
have a crucial part to play. I think there has to be a respect of
their knowledge and understanding, so I think anybody who is
delivering a service, whether it be a GP or a consultant
psychiatrist or a nurse on a hospital ward, has to take the time to
sit down and listen to what the carer is saying to them. They know
the person well. So, documents like ‘This is me’, which
has come up in the consultation events—. That ‘This is
me’ is completed before a person goes into hospital, goes
into residential care, so there is that person-centred approach
that’s taken, and the carer obviously is involved in
that—.
|
|
[94]
What else have carers said to us? I think
the respect, going back to the hospital ward, involving the carer
on the ward and giving them the opportunity to stay with the
person—. The other thing for me is around—it’s a
tenuous link, I guess, but it’s around eligibility criteria.
So, if we’re truly talking about supporting people in their
own communities for as long as is possible for them to be
independent—at the moment, the eligibility criteria to
support services are getting higher and higher. That is going to
have an impact on carers. So, we are only being able to refer
people in at almost a crisis situation, where there is a breakdown
of care. That, to me, does not make sense in a world where we
should be trying to be talking about prevention.
|
|
[95]
So, I think, through the strategy, we do
need to be looking at eligibility criteria so that the impact on
carers—. And carers assessment as well—we need to be
pushing that they have their carers assessment. Also direct
payments—can we look at the better use of direct payments so
that carers of people with dementia can make choices about the type
of support that they need and when they need it? That isn’t
used to best effect for people with dementia.
|
|
[96]
Rhun ap Iorwerth:
Are those kinds of elements reflected
strongly enough in the strategy as it is, or is this an area where
there does need to be—?
|
|
[97]
Ms Phelps: I think, for me, the eligibility criteria are not
reflected enough at all.
|
|
[98]
Dai Lloyd: Fine. Two questions, three minutes. Okay? So,
Caroline first and Dawn, you can roll your two into one.
|
|
[99]
Caroline Jones:
May I ask your views on whether
implementing the strategy will require additional and separate
funding, and if so, where could this most effectively be
used?
|
|
[100]
Dr Bridges: Yes. A nice brief enough answer for you
there.
|
|
[101]
Dai Lloyd: Excellent—[Inaudible.]
[Laughter.]
|
|
09:45
|
|
[102] Dr
Bridges: It absolutely does have to
be done with—. You do need to have some dedicated money for
it, and I think as I explained earlier, there are
significant parts of this where, if you fund it properly and in the
right way, it will actually save money elsewhere in the system. So,
support workers, I think, are a perfect example of that, where you
are ultimately investing to save, and I think that’s a really
important area. So, there are areas like that where you will save
money elsewhere in the system. Diagnosis is probably the one where
you will invest but it will cost you: the more people you diagnose,
you are going to have to pay for the support. But I think
it’s the right thing to do. So, those are the two areas where
I think I would most like see funding allocated.
|
|
[103] Ms
Phelps: But I think commissioning plays a role there as
well—so, better commissioning and understanding what third
sector organisations can provide. Often the third sector can
provide services more cheaply. So, it’s looking at that as
well.
|
|
[104] Dai
Lloyd: Point taken.
|
|
[105] Caroline
Jones: Thank you.
|
|
[106] Dai
Lloyd: Dawn.
|
|
[107] Dawn
Bowden: Very quickly, Chair, yes. Two very quick questions; one
on the dementia strategic action plans oversight. I know
you’ve commented on who might be involved in that,
particularly referencing younger people with dementia. Do you just
want to say a little bit more about—maybe not concerns, maybe
that’s too strong a word, but a little bit more about what
you think that should do? And secondly, around measurements and,
again, you have commented on that, about how the strategy should be
measured, but what do you think should be the main priorities and
how should those be measured? So, those two questions, really.
|
|
[108] Dr
Bridges: Shall I pick up on the governance?
|
|
[109] Ms
Phelps: Yes, fine.
|
|
[110] Dr
Bridges: So, in terms of governance and oversight, I think, in
some ways, the Welsh Government might end up being a victim of its
own success—that, because there’s been this really
strong involvement of people affected by dementia during the
consultation phases and people and groups have had a really strong
voice in the process so far, I think there’s now a really
important need to make sure that those people, or those groups,
have a voice as the strategy is then taken forward and delivered
and that it isn’t something that is purely governed and run
within Welsh Government. So, there needs to be a mechanism to
ensure that there is ongoing feedback and ongoing dialogue with
people affected by dementia and families and carers so that their
voice is heard throughout the process. I think it’s been
really helpful to the development of the strategy to have that
voice, and I think if we’re to make sure that it is properly
delivered, that needs to be something that is factored in so that
it isn’t just done by civil servants within Cathays Park; it
needs to be something that the widest possible cross-section of
people affected by dementia feel ownership of.
|
|
[111] Ms
Phelps: And I think added to that is the overarching group, the
older people’s mental health group, which I believe is going
to be the body that’s going to monitor its implementation,
and to make sure that the people around that table reflect all
agencies, so that it’s not very—. My experience of that
group to date, with the vision, has been that it’s quite
health-focused. I think there needs to be representation from
social care, there needs absolutely to be the voice of people
living with dementia, but housing needs to be around the table, and
the third sector et cetera. So, a better cross-section who can
really feed into it, monitor and scrutinise. Picking up on
monitoring, for me, that is key, and I was really pleased to see
that three-year break, if you like, to check in and see how
we’re doing against all the key elements; it’s a real
positive, and we need to make that dynamic and meaningful at that
point.
|
|
[112] Dawn
Bowden: Thank you for that. I’m conscious of time, so the
second part of my question: just very briefly, what would you see
being the key priorities? We’ve got to measure these: what do
you see as being the outcomes, how they should be measured, and
what should be the key priorities that we’re looking to
measure, really?
|
|
[113] Dr
Bridges: Diagnosis, diagnosis, diagnosis is absolutely vital.
So, I think that’s the first thing that I would want to see
as a key priority. The second is around support workers and seeing
how we’re doing with that aspiration of making sure every
newly diagnosed person has access to a support worker. And then I
think the third is around training, and that aspiration of 75 per
cent of NHS staff to be dementia trained; that’s a good
target, but where will we be in three years’ time? How will
we be performing against that? So, those are the three that I think
are the most important, but the diagnosis one, I think, will be a
really strong indication of not just how the strategy is going in
terms of its oversight, but actually if the funding there to
support it as well.
|
|
[114] Ms
Phelps: Can I just add to that? On top of that, because the
overarching title of the strategy is about creating a
dementia-friendly Wales, for me, it’s asking people with
dementia, ‘Are you experiencing dementia-friendliness in the
community that you live in?’ So, it’s overarching
public awareness and understanding. I think we’re at a
position with dementia now where it’s bigger than any one
agency—I say that all the time—and we need to ensure
that there is a societal responsibility now for dementia to really
make a difference to the lives of those people living with it. So,
I would want to be checking in and saying to people, ‘Does
your community feel dementia-friendly now, and if not, why not?
What can we do to improve?’
|
|
[115]
Dai Lloyd: Grêt. Diolch yn fawr. Tystiolaeth
fendigedig y bore yma, mae’n rhaid imi ddweud.
|
Dai Lloyd: Great. Thank you very much.
Wonderful evidence this morning, I have to say.
|
|
[116]
Ms Phelps: Diolch yn fawr.
|
Ms Phelps: Thank you.
|
|
[117]
Dai Lloyd: Mae’r dystiolaeth ysgrifenedig yn
fendigedig, ac mae’r cwestiynau a’r atebion y bore yma,
o’ch rhan chi, wedi bod yn fendigedig. Diolch yn fawr iawn i
chi. Mi gewch chi drawsgrifiad o’r cyfarfod yn fan hyn
i’w wirio i wneud yn siŵr eich bod chi’n hapus
efo’r ffeithiau ac ati. Ond diolch yn fawr i chi unwaith eto
am eich cyfraniad. Diolch yn fawr.
|
Dai Lloyd: The written evidence was
excellent, and the questions and responses have also been wonderful
this morning. Thank you very much. You will receive a transcript of
this morning’s proceedings so that you can check it for
accuracy. But thank you once again for your contribution.
Thank you.
|
|
09:50
|
|
|
Ymchwiliad i
Strategaeth Genedlaethol Ddrafft Llywodraeth Cymru ar Ddementia:
Sesiwn Dystiolaeth 2—Age Cymru a Chynghrair Cynhalwyr
Cymru
Inquiry into the Welsh Government’s Draft National Dementia
Strategy: Evidence Session 2—Age Cymru and Wales Carers
Alliance
|
|
[118]
Dai Lloyd: Rydym ni’n symud yn syth i’r eitem
nesaf: eitem 3, fel y mae Aelodau yn gwybod eisoes, achos dyna beth
yr ydym ni wedi bod yn gwneud trwy’r bore, yw’r
ymchwiliad i strategaeth ddrafft genedlaethol Llywodraeth Cymru ar
ddementia. Hwn ydy’r ail sesiwn dystiolaeth. Mae Age Cymru a
Chynghrair Cynhalwyr Cymru o’n blaenau ni rŵan am y tri
chwarter awr nesaf. A gaf i felly groesau Rachel Lewis, rheolwr
polisi Age Cymru—bore da i chi—a hefyd Kieron Rees,
uwch-reolwr materion allanol Cynghrair Cynhalwyr Cymru?
|
Dai Lloyd: We’ll move immediately
to our next item, which is item 2. Again, as Members are aware,
because this is what we’ve been undertaking all morning, this
is the inquiry into the Welsh Government’s draft national
dementia strategy. This is the second evidence session, and
we’re joined by Age Cymru and the Wales Carers Alliance for
the next three quarters of an hour. So, may I welcome Rachel Lewis,
policy manager, Age Cymru—a very good morning to
you—and Kieron Rees, senior external affairs manager for the
Wales Carers Alliance?
|
|
[119]
Yn naturiol, rydym ni wedi derbyn,
fel Aelodau, yr holl dystiolaeth ysgrifenedig, ac felly yn ôl
ein traddodiad, fe awn ni’n syth i mewn i gwestiynau ar y
strategaeth ddrafft yma. Mae’r cwestiynau cyntaf o dan
law Julie
Morgan.
|
Naturally, we, as Members, have received all
the written evidence that you provided, so according to tradition,
we will move immediately to questions on this draft strategy. The
first questions are from Julie Morgan.
|
|
[120]
Julie Morgan: Thank you, Chair, and good morning. I think all the
agencies that have contacted us have stressed how important it is
to involve people who are suffering with dementia and their carers
and families in the design and in the development of services. How
do you think the draft Bill matches up to that?
|
|
[121]
Ms Lewis: I think I would have expected to see a little firmer
guidelines on involving people and their carers in the strategy. We
would expect to see—. It’s really, really important
that people designing services—not only people designing
services, but people commissioning services, really understand and
talk to and engage with people living with dementia, their carers
and families, and also the third sector organisations that have
expertise. I don’t think it’s strong enough—I
didn’t see enough reference to involvement throughout the
strategy. It is there, but I do believe it could be strengthened.
We believe that all people delivering services—public
sector—should have really strong and robust mechanisms in
place for gaining the views of people with their carers, and I
think there’s a lot of work to be done in that area. So,
perhaps a performance measure based around getting those mechanisms
in place would ensure that real involvement does happen at every
stage.
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[122]
Julie Morgan: What sort of mechanism?
|
|
[123]
Ms Lewis: Well, mechanisms to talk to people. If a commissioner
is commissioning a service for people with dementia, they should
have to as part of their training have talked to people within the
community, and have talked to third sector organisations, perhaps,
about what the particular needs are. So, I would expect every
commissioner to have to have that training, and that awareness and
that understanding. I should think there would be ways of people
working with people with dementia having those conversations,
making sure that those ‘what matters’ conversations
really, really tease out the things that matter to that person. I
think there are ways that those can be strengthened to ensure that
they are taking place.
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|
[124] Mr Rees: I
think, for us, one of the big issues in involvement in the design
and delivery of services, particularly in health, is about a
continuing lack of awareness of the role of the carers of people
with dementia in supporting and working with the person with
dementia. So, we’re still here, and the Carers Trust did a
piece of research three years ago called ‘A Road Less
Rocky’ that very much found that carers didn’t feel
they were involved or talked to throughout the healthcare process.
Some of the findings of that were that it was down to a lack of
understanding among professionals, and that’s why we worked
with the Royal College of Nursing to develop a
triangle-of-care model for dementia, which was all about making
sure the carer is also involved, and that everyone understood their
role in relation to each other. So, something that would improve
the way the strategy approaches involvement of carers would be
about making sure that there’s a real awareness of the role
of carers of people with dementia.
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|
[125] Julie
Morgan: Thank you very much. Moving on, I think Age Cymru have
stressed how important it is to have independent advocacy, and that
is mentioned in the draft Bill. Do you think this Bill will improve
access to independent advocacy?
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|
[126] Ms Lewis:
I hope so. It’s in the Bill and it’s in the strategy as
one of the actions, isn’t it, that people should have access
to an independent advocate. So, we would hope that, yes, it does. I
think we mentioned in our written evidence that we would like to
see it reflected in the performance measures as well, that there
should be a measure of how many people are accessing independent
advocates. Age Cymru is running a project where they’re going
out and talking to health providers and local authorities about the
role of the independent advocate and how important it is to
commission these services. So, we’re hoping that that will
raise awareness of the importance of the role of advocacy, with the
draft strategy again saying that this is needed. We hope that that
will happen, but without the proper performance measure,
we’re not going to know. So that would be a concern, that
it’s something that perhaps could easily be dropped off.
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|
[127] Julie
Morgan: Right. So, you’d like something put in that would
ensure that happens.
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|
[128] Ms Lewis:
Yes. And to chart the number of people that are actually getting
that advocacy service, and advocacy in care homes, independent
advocacy in care homes, which is a very important area as well.
|
|
[129] Julie
Morgan: Thank you. Anything to add to that?
|
|
[130] Mr Rees:
No. We agree with Age Cymru’s comments.
|
|
[131] Julie
Morgan: That’s fine. The other issue I think you mention
in your evidence is about access for different ethnic groups to
services and the fact that there’s a higher rate of dementia
in some ethnic groups. Do you think this strategy is going to make
it easier to reach out to some of those people at an earlier stage?
Because I believe that they turn up much later in the process.
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|
[132] Ms Lewis:
Yes. There is strong evidence, actually, that shows that awareness
is lower among BME communities. Simple things: in many languages
there’s no definition of the word ‘dementia’, so,
therefore, diagnosis, awareness, and public health campaigns have
to reach out hard and really make that effort to make sure that
they’re going into those communities and raising awareness.
I’m hopeful that there’s an action that—. All
local authorities have to develop actions that will reach out to
BME communities, and we’re hopeful that we can see what these
will be. There are examples of very good practice. In London at the
moment, they did have a Faith in Health project, where they have
trained imams to actually go into the community and talk to people
and raise awareness among those families of people living with
dementia. It’s always an issue that people from BME
communities access services later. They have less awareness of what
their rights are to those services, particularly people that may
not have grown up in Wales. So, I think by working with community
groups, perhaps making sure that health boards have a diverse staff
membership as well, there are ways to reach out. But, given the
evidence around higher rates in BME populations, I think that
getting rid of that stigma, raising awareness and making sure that
people access services at the right time is really, really
important. We are looking to see what sort of actions local
authorities develop.
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|
[133] Mr Rees:
And on that point, something we do know is that carers in many BME
communities can be particularly difficult to reach, and often need
very targeted services. And our experience of support in Wales at
the minute is that those targeted services, on the whole,
aren’t there in the areas they need to be.
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|
[134] Julie
Morgan: Thank you. It’s very interesting, I think you
mentioned that in some languages the word ‘dementia’
isn’t there. I was going to ask you about services in the
Welsh language. I don’t know if I can defer to the Chair
about whether there is a word for ‘dementia’, or
whether you know, in the Welsh language. Is there?
|
|
[135] Ms Lewis:
I don’t know, but I was thinking exactly the same thing,
actually. I’m not sure.
|
|
[136] Dai
Lloyd: Well, a word in English would be a good start, because
‘dementia’ is another language as well, but never
mind.
|
|
[137] Julie
Morgan: Indeed. That’s a very important point.
So, what do you think about the services
in the Welsh language and do you think that this draft Bill will
improve them?
|
|
10:00
|
|
[138]
Ms Lewis: I think there’s evidence that shows that people
do revert to their first language when they’re living with
dementia, so it’s really important that those services are
there. I think we would of course be looking to ensure that, where
people want to access a service in Welsh, they should be able to do
so. So, I think there’s room for improvement there and I
think that the actions in the strategy could go some way to raising
awareness of that need to ensure that people can speak Welsh when
they need to.
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|
[139]
Mr Rees: On that issue, I think that something that the
strategy doesn’t deal with is that providing, particularly in
rural areas, a Welsh language ‘breaks and befriending’
service, for example, requires more resource than the very
pressured social care sector currently has. I don’t think
that the strategy really does get to grips with some of the
commissioning issues around replacement care.
|
|
[140]
Julie Morgan: And going on to the rural areas, you feel
there’s not enough in the strategy in order to address issues
in the rural areas.
|
|
[141]
Mr Rees: It’s things like—often local authorities
commission replacement care, including replacement care for people
with dementia, on an hourly rate that’s flat across the local
authority, for example, and it doesn’t take into account
where there are long travel times between calls, so that money
doesn’t get you as much in return.
|
|
[142]
Dai
Lloyd: Symudwn ymlaen at ddiagnosis ac arallgyfeirio, ac mae gan
Angela gwestiwn.
|
Dai
Lloyd: Moving on to diagnosis
and signposting, Angela has a question.
|
|
[143]
Angela Burns: I just wanted to ask you about increasing the number
of primary care settings that are dementia-friendly. For us lay
people, could you just give us a quick overview of what you think
dementia sufferers and their carers would like to see, rather than
us imposing it on them? What would they like to see?
|
|
[144]
Mr Rees: From the carer’s perspective, there are a
number of actions that have cropped up in a couple of pieces of
research as well as in a campaign called John’s Campaign,
which is, for example, around making hospitals more welcoming to
carers and people with dementia. We’ve heard some very
troubling stories about carers being kept away from their friend or
family member, who they are looking after. So, we’ve called
consistently for out-of-hours access to wards.
|
|
[145]
In GP surgeries, often we—.
Information is so important to the carer, but also, particularly
when it’s a carer of someone with dementia, it’s not
just one particular point they need information on—it’s
a journey from diagnosis to when a caring role becomes more active,
to when the person loses their mobility, to when the carer’s
health may deteriorate. They need information at all of these
points. There are things that you can do in GP surgeries like
awareness raising and having the receptionist, the nurse or doctor
ask the person, ‘Are you a carer, do you need support?’
to help signpost them to the support they need. Four out of five
carers in Wales first encounter a statutory service in a
community-health-based setting. So, we think it’s just about
that visibility and that awareness.
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|
[146]
Similarly, one of the reasons we
developed the triangle-of-care model that I mentioned was because
we’ve heard some very—. When we carried out the
‘A Road Less Rocky’ research, we heard some very
troubling stories about carers who weren’t being given
information on medication changes for the person who they were
caring for and on GPs refusing to share information with the carer
for confidentiality reasons. So, I think that increasing the
awareness of the role that that carer plays would help make that
setting more carer-friendly.
|
|
[147]
Angela Burns: Is there anything in terms of physical alterations
that we should be making—more colours or pathways or anything
like that?
|
|
[148]
Ms Lewis: I think it has been raised about having
colours—a yellow door to show the toilet, and I know that Sue
mentioned the plates and having different coloured plates. So, I
think there are guidelines that have been drawn up in collaboration
with people living with dementia on what would make their lives
easier. So, there are things around the built environment that can
certainly, and should, be implemented. But again, it’s about
being able to talk to the person. People in hospitals do have
strict visiting times and we agree also that, where it’s
appropriate, and where people want to be with their loved one, they
should be able to, particularly if that loved one has had a
diagnosis of dementia, where things can perhaps become more
confusing. So, we would support John’s Campaign. Engage with
the person, find out what the carer wants and what’s
appropriate for them.
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|
[149] Angela
Burns: Thank you.
|
|
[150] Dai
Lloyd: Okay. Lynne, you’ve got the next three
questions.
|
|
[151]
Lynne Neagle: Thank you. Can I just ask for your views on whether
the strategy is adequate in the number of dementia support workers
it’s looking to provide?
|
|
[152]
Ms Lewis: I think there’s 32 dementia support
workers—and we would always call for that, as it’s such
an important role. I think the performance measures, just to
increase the number—. So, with that set number to aim for,
that’s going to be hard to be achievable. It could just mean
two or three and then you’ve achieved your target. I think
there should be firm targets around how many dementia support
workers there are. Don’t underestimate the importance of
having that single point of contact, that one person to talk you
through the interface of all the different caring organisations
that you might come across—with the professionals, with
health and social care and the GP. People can get many calls on a
daily basis and someone to help them deal with that and manage that
is invaluable. So, we would like to see firmer targets around the
number and an increase in dementia support workers.
|
|
[153]
Mr Rees: I’d agree. Given the scope of the population in
Wales with dementia, I’d echo the Alzheimer’s
Society’s comments about it needing to be five to 10 times
that.
|
|
[154]
Lynne Neagle: Okay, thank you. Your written evidence says that you
think a national strategic approach should be taken to funding
dementia services. How do you see that looking?
|
|
[155]
Ms Lewis: One of the problems for people with dementia is
access to services and the fact that there’s a postcode
lottery. When Age Cymru did the work commissioned by the older
people’s commissioner, they talked to 60 people across Wales
living with dementia, and their carers. It was quite striking and
worrying, the difference and variation in what services were
available and how people talked about what they could access. So,
for us, a national approach would encompass not just third sector
but public sector services and some commitment and some joint
working, perhaps via regional partnership boards, that
they’re going to look towards making sure that they iron out
this postcode lottery and that there are services there that people
can access. Because of course, without the services to access, the
strategy is going to be meaningless. It’s got to have—.
Without the money behind it, that joint working between health
boards, local authorities and third sector, sharing expertise,
engaging with people—. There’s got to be some sort of a
strategic approach to try and make sure that that will happen,
perhaps via the regional partnership boards looking at population
needs assessments, what’s there, and developing actions in
response to that.
|
|
[156]
Lynne Neagle: So, you’re talking about ring-fencing as well,
or is it just better regional working?
|
|
[157]
Ms Lewis: Better regional working, I think—pooled
budgets, looking at how systems can develop new services in
response to demand.
|
|
[158]
Mr Rees: I think we’d agree with that, but one thing we
have been consistently talking about is that we do think there
needs to be national investment in breaks and respite and
replacement care to support the health and well-being of
carers.
|
|
[159]
Lynne Neagle: Okay, thank you. And just finally, the document says
that health boards and local authorities will work with local
communities and third sector organisations to encourage them to
open up their services so that people with dementia and their
families and carers can participate. You’ve asked for clarity
on that. It does seem a bit of a strange thing to say. Can you just
expand on that?
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|
[160]
Ms Lewis: Yes, sure. I think there were two points around that.
It was evident that people had been turned away from more generic
services at the moment—I imagine that that evidence is there.
So, moving on from that, in principle, I think, yes, that’s a
good idea, to make sure that people with dementia aren’t
turned away from generic services and befriending services.
Anything that’s going to encourage an all-inclusive approach
is to be welcomed. Our concerns as well would be where these
services are being withdrawn. I think we mentioned in the evidence
that, in Swansea, the befriending service that has been running for
10 years is due to end now, in 2017. Our concerns would be, as the
services are diminishing: how will opening up these services
benefit people living with dementia? It’s a real, real
concern for us that these community services aren’t really
there.
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|
[161] Mr Rees: I was
just going to say that I agree. And actually, with our network
partners—our local services
operators—they’re all under tremendous financial
pressure at the minute. That has included, in the past few years, a
couple of services having to close and the language about
‘opening up’ services to groups suggests that
there’s unused capacity in the third sector and I’m not
sure that that’s the case.
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[162] Lynne
Neagle: No, okay, thank you.
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|
[163]
Dai Lloyd: Rydym ni nawr yn troi at yr adran yn y
strategaeth ddrafft sy’n ymwneud efo gofal mewn ysbytai.
Angela.
|
Dai Lloyd: We will move on to the
section of the draft strategy relating to care in hospitals.
Angela.
|
|
[164] Angela
Burns: Thank you. Could you tell me what you think we should
mean by ‘dementia training for hospital staff’? What
should that achieve?
|
|
[165] Mr Rees:
From our perspective, we think the training for hospital staff
should include a self-assessment of what policies are in place to
support carers of people with dementia, as well as include training
on what the needs of carers are and how hospital staff can support
and involve carers meaningfully, to avoid circumstances where
carers are shut out and are not getting the information they need.
For example, if hospital staff were able to signpost a carer to
information and advice when they needed it, that would be
tremendously beneficial. The evidence is really clear that if you
support the carer it means the person with the care needs stays at
home for longer and stays healthier and more well as well.
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|
[166] Ms Lewis:
I think the strategy mentions the good work framework and I think
within that there are clear guidelines. I think it’s quite a
robust learning and development framework. So, I think we would
welcome staff being trained using that resource.
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|
[167] Angela
Burns: I think what I’m trying to drive at is that we use
the words ‘strategy’ and ‘policies’ and
‘guidance’, et cetera, and they’re valuable and
really easy. But I had cause to spend a substantial amount of time
on various wards not so long ago and I was
horrified—absolutely horrified—by the numbers of people
with dementia and by the absorption and difficulty of managing
them. I saw very, very frightened people; I saw very, very
aggressive people; I saw members of staff really struggling to
cope; I saw members of staff actually having to do nothing but look
after people with dementia to the detriment of others; and I also
saw some acts of absolute pure compassion that were uplifting.
I’m trying to figure out what it is we physically actually
need to do in a hospital to make a hospital setting a safer, kinder
and less chaotic place for somebody with dementia, especially when
you read the research that says if somebody has dementia at this
sort of level and they’re committed to hospital for a while,
their dementia will substantially increase. What we obviously want
to do is to be able to try to minimise that increase, so that they
can come back out to their homes and carry on for as long possible.
So, I’m just looking for something that’s a little bit
more tangible.
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|
[168] Ms Lewis:
I take all your points on that and it is a daily reality that on
wards in Wales today there will be people with dementia.
That’s something that the NHS has to develop its response to
and how it’s going to ensure these people get the care that
they need. There are very good volunteer schemes where people can
go and train volunteers.
|
|
[169] Angela
Burns: Could you name one because we’re looking for
tangible evidence?
|
|
[170] Ms Lewis:
Age Cymru Gwent do a Robins scheme. I can send you information on
that.
|
|
[171] Jayne
Bryant: I could wax lyrical about the Robins scheme.
|
|
[172] Angela
Burns. Brilliant. [Laughter.]
|
|
[173] Ms Lewis:
Yes, you visited it, didn’t you?
|
|
[174] Dai
Lloyd: But not now, Jayne. [Laughter.]
|
|
[175] Ms Lewis:
So, that’s one. I know that the Royal Voluntary Service have
hospital volunteers in hospitals. So, that’s something that
can be looked at, and the guidelines around care and the carers
being involved in the care as well. For some people, they might
welcome that respite when a loved one is in hospital, but for
others they want to be there, they want to be able to help, so it
seems very odd. Actually, my dad had dementia for three years and I
spent a whole day with him in A&E, looking after him when he
was unwell, but as soon as he went on to the ward I was told to
leave. That was scary for him as well. It’s that cut-off:
‘Sorry, he’s been admitted. I’ll see you
later.’ I think there needs to be some real rethinking,
bearing in mind the numbers of people with dementia on the wards,
how this is going to be—. I accept all your comments. It
needs to have a real rethink.
|
|
[176] Angela
Burns: Yes, thank you.
|
|
10:15
|
|
[177] Mr Rees:
On that point about the carer and the access, we know that social
continuity helps to maintain the dementia at that level, as you
said, rather than letting it escalate. So, by allowing the carer
access to provide that social continuity, it can reduce the anxiety
and help maintain the wellness of the person. But also, I think,
something that we have found—there was a piece of research
that found that where there is a carer, when there’s a
delayed transfer of care, in 63 per cent of cases, it’s
problems with the carer that cause the delay in the transfer of
care. So, by making sure that the community social care
support’s in place, it means that that person can leave the
ward earlier and then is less likely to experience the detrimental
effects that staying in hospital with dementia can have.
|
|
[178] Angela
Burns: And a real quick follow-up: do you have the same issues
with carers having access to people in care home settings or are
they a bit more flexible?
|
|
[179] Mr Rees:
That’s not something that’s come up in our work.
|
|
[180] Ms Lewis:
I think it is a little bit more flexible; it depends on the care
home, but there certainly are care homes that still do have the two
to four hours. My belief is that it’s going towards a much
more flexible approach and you can go in. Good practice would mean
you could go and help with the meals and sit and help your loved
ones eat and change perhaps or what’s appropriate, you
know.
|
|
[181] Angela
Burns: So, do you think the draft strategy actually will give
carers access to their loved ones in hospitals?
|
|
[182] Mr Rees:
I don’t think so. When you look at the key proposed actions
in the document, there’s very little around access to
hospitals or supporting carer-friendly policies.
|
|
[183] Angela
Burns: Thank you.
|
|
[184] Dai
Lloyd: Symud ymlaen i ofal
lliniarol a diwedd oes, mae cwestiwn gan Rhun.
|
Dai Lloyd: We’ll move on to look
at palliative and end-of-life care and Rhun has questions.
|
|
[185] Rhun
ap Iorwerth: Jest i’r ddau
ohonoch chi. Rwy’n gwybod bod Age Cymru wedi dweud yn y
dystiolaeth ysgrifenedig eich bod chi’n credu y dylai pobl
allu marw lle y maen nhw’n byw. Mae’r Alzheimer’s
Society hefyd wedi dweud rhywbeth tebyg. A oes gennych chi ragor
i’w ddweud wrthym ni ynglŷn â beth yn union y
dylem ni ei glywed yn y strategaeth derfynol ynglŷn
â’r pwnc yma?
|
Rhun ap Iorwerth: For both of you. I do
know that Age Cymru has said in its written evidence that you
believe that people should be able to die in their place of
residence. The Alzheimer’s Society has also said something
similar. Could you tell us a little more about what you’d
like to see in the final strategy in relation to this?
|
|
[186] Ms Lewis:
I think there is very good wording in the strategy around
end-of-life care and the need to ensure that professionals,
healthcare workers are trained to make sure they have those
difficult conversations with people and with carers about their
end-of-life care. Never underestimate the value of that. I think
the point that we’ve picked up on particularly was around
end-of-life care for people living in care homes. A lot of people
with dementia will end their life in care homes, and it’s
ensuring that they are also well prepared to allow people to end
their life within that care setting, instead of what I think
happens in reality is that when someone gets ill or looks like
they’re getting very unwell, an ambulance is called. I think
there’s got to be a rethink in care homes around, you know,
‘Let’s really work together to make sure that we become
a place where people can end their lives as well’, instead of
the default option being to ring that ambulance. Really, it’s
passing the buck, isn’t it? We welcome a lot of the content
of the strategy around end-of-life care—there was a really
strong report about dementia care by Marie Curie—but for me,
that little bit is missing. [Inaudible.]
|
|
[187] Mr Rees:
Just to add to that, until recently there was a very good piece of
work in Swansea called SPice—the Swansea palliative
intermediate care team—which was the local authority, third
sector and health working together to make sure people could die in
their place of choice—of their own choosing.
|
|
[188] Rhun ap
Iorwerth: What was it called again, just to make sure
we’ve got it?
|
|
[189] Mr Rees:
It was called SPice, which I can send a note to the committee
on.
|
|
[190] Rhun ap
Iorwerth: And that’s something that offers up an example
of good practice that could be rolled out in other parts of Wales,
with the guidance of the strategy, you think.
|
|
[191] Mr Rees:
Yes, absolutely. I think it had some very strong evaluations. But
also it was a good piece of work in terms of local authorities and
health working together to provide people with the situation they
wanted.
|
|
[192] Rhun ap
Iorwerth: What was the key thing that that strategy got
right?
|
|
[193] Mr Rees:
I think it was having open lines of communication, and it involved
a replacement care provider, so that the local authority would make
sure that there was the homecare to support the person as well,
once they’d come out of hospital.
|
|
[194] Dai
Lloyd: Ocê. Jayne
efo’r ddau gwestiwn nesaf.
|
Dai Lloyd: Jayne has the next two
questions.
|
|
[195] Jayne
Bryant: Kieron, you mentioned earlier that for people with
dementia and for carers it’s actually a journey. Can you just
expand a bit on that, and do you think that the draft strategy will
contribute to the provision of better support for carers for people
with dementia?
|
|
[196] Mr Rees:
We were really pleased to see how many mentions of carers there are
throughout the strategy, but then that seemed slightly at odds with
the commitments that were made in the actions and the performance
measures, of which, I think, only one relates directly to carers.
We also felt that the strategy didn’t reflect that journey,
and actually doesn’t engage with the 10 or so points, where
some of the circumstances changed throughout caring for someone
with dementia. So, I think what we’d like to see in the
strategy would be recognition about the provision of information,
and that’s kind of tied up with awareness among healthcare
professionals of the role of carers and how they can be signposted.
And I think, in terms of that support the carers need, we’d
also like to see more around replacement care respite breaks,
because the only real commitment there is to investigate a national
respite scheme, which we very much welcome and we called for
it—we’ve been calling for a carer well-being fund over
the past 18 months—but that can only be a piece of the puzzle
really.
|
|
[197] Jayne
Bryant: Definitely, and as you said, people with
dementia—the carers can start off in one position but
it’s that support throughout the disease, that I think they
need as it gets further on—
|
|
[198] Mr Rees:
And especially with the fact that their own health or circumstances
may change.
|
|
[199] Jayne
Bryant: That’s the crucial point, isn’t it? Because
a lot of people are caring for loved ones with dementia, and if
their health deteriorates, then that puts those
people—perhaps it ends up in people going to hospital. And
you feel there’s not enough in here about that.
|
|
[200] Mr Rees:
And we’ve heard examples in Cardiff of where the carer has
become unwell, and then both have to go into hospital. Obviously,
as well as the health and well-being implications of that, there
are the financial implications as well.
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[201] Dai
Lloyd: Lynne’s got a supplementary just on this
point.
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[202]
Lynne Neagle: I just wanted ask Kieron: have you got any evidence
that the raising of eligibility criteria is meaning less access to
respite care for families?
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[203]
Mr Rees: So it’s still very much early days in terms of
the impact that the eligibility criteria are having. We did a
series of workshops with social workers in September and October,
so about six months into the Act. And I think we talked to around
100 social workers, and what was coming through was just how mixed
it is at the minute. So some social workers were telling us
there’s been a real increase in people requesting assessments
because it’s filtered through that they have the right to an
assessment. But then we also heard, for example, that one local
authority and the social workers were under the impression that if
there’s something in the community, then the local authority
can’t offer any assistance, which is actually quite a
misinterpretation of what the regulations say. So we’re
interested to see, perhaps one year in, where things
stand.
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[204] Dai
Lloyd: Jayne.
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[205] Jayne
Bryant: Just to follow up on that. Age Cymru stated in the
evidence—Rachel stated that—with no mechanism to
monitor the impact and delivery of the carer support plan, an
increase in the number of plans is meaningless. Perhaps you could
expand a bit on that, and also talk about the effectiveness of the
performance measure.
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[206] Ms Lewis:
I think that’s an issue for us across the performance
measures—increase the number. Well, increasing the number
doesn’t tell us how that’s impacting on the older
person. Our concern is how this is going to improve lives for older
people. Increasing the number of carer’s assessments could be
meaningless if it’s just someone going in, having a
five-minute chat and writing, ‘I’ve done that’.
And that does happen; we’ve heard of that happening. So, for
us, we’d want more monitoring and evaluation and going back
to that person, saying, ‘Okay, so what’s happened,
what’s changed for you? How has this improved your daily
life, your ability to be with that person and care for that
person?’ So, just increasing them is not going to have that
really quantifiable impact that we would like to see.
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[207] Mr Rees:
And on the carer’s assessments measure, it’s not even
increasing the number of carer’s assessments carried out,
it’s increasing the number of carer’s assessments
offered, which means you don’t know if those carer’s
assessments are then being carried out, and once they’re
carried out whether the actions contained in them are actually
happening. So we’d agree that we’d rather focus on
what’s the impact of this on the carers themselves,
particularly as, given there’s a statutory duty on local
authorities to offer a carer’s assessment to a carer,
I’m not sure that measuring the increase in that happening
means that much, because this should be increasing anyway.
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[208]
Dai Lloyd: Caroline Jones sydd â’r cwestiwn
nesaf.
|
Dai Lloyd: Caroline Jones has the next
question.
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|
[209] Caroline
Jones: Diolch, Chair. When caring for people suffering from
dementia, staff need to be confident that they’ve had
sufficient training in order to deal with any eventuality, really.
What are your views on the draft strategy for improving the
training of people working in dementia services?
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|
[210] Mr Rees:
We welcome that the strategy talks about increasing the training,
and the section on public awareness as well, but I think what is
absent is, again, that point on the role of the carer and how to
involve the carer meaningfully. We know that half of all carers of
people with dementia struggle to get their friend and family member
a diagnosis. These are the people who know the person best and know
when something perhaps isn’t quite as it used to be. I
remember reading about one person who said that the GP had asked
the person with dementia a question about, ‘When did
your symptoms start?’, and they responded, ‘Seven
months ago’, whereas, if they’d spoken to the carer, it
was that morning that the symptoms had started. That’s where
involving the carer can really help get clarity and get that
diagnosis quicker.
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|
[211] Ms Lewis:
We would say that dementia training is crucial to understand how
you can work with the particular the needs of the person with
dementia—it’s understanding that no two people are
going to be the same. You need to engage and find out a bit about
the person, their history and particular needs. People making
appointments in doctors’ surgeries all need to understand the
challenges that can face someone living with dementia on a daily
basis so that they can react appropriately when, perhaps, an
appointment is missed, or someone turns up too early or someone
turns up too late—for us, that’s all crucial. But,
looking again at the commissioning of services, are those people
who are delivering and commissioning services, are they trained?
Are they really able to deliver that domiciliary care, perhaps
going into the home of someone with dementia with no knowledge of
the illness? That, for us, would raise a red flag, so we think
training is really crucial, but it’s got to be very
widespread.
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[212] Caroline
Jones: Yes, I agree. Thank you very much.
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[213]
Dai Lloyd: Y cwestiwn olaf i Dawn.
|
Dai Lloyd: The final question comes
from Dawn.
|
|
[214] Dawn
Bowden: Thank you, Chair. Just two short questions to finish: I
don’t think either of you specifically referred to this in
your evidence, so I’d just be interested to know whether you
think that oversight of the delivery of the strategy by the
delivery assurance group is the most appropriate way to deliver
this, and, if so, if there’s anything else that you’d
like to see in that.
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|
[215] Ms Lewis:
I think that’s okay, but I think we would ask again that it
involves people with dementia within that group and that third
sector expertise is called upon—so, perhaps that group but
broader. We’d be looking at what that group
comprised—who was on it—and we would expect to see a
really representative group there.
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[216] Mr Rees:
I’d agree and, again, I think what it comes down to for us is
to make sure that the performance measures and the actions in the
strategy are right to begin with so that you’re scrutinising
the right things.
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[217] Dawn
Bowden: Okay, that’s fine. Can I just pick up on
something I think you said earlier, Kieron? You talked about a
reference to unused capacity—in your experience, it just
isn’t there. What do you think, then, is the likelihood of
there being capacity both in the NHS and the social care sector for
the delivery of the strategy?
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|
[218] Mr Rees:
I think, in terms of social care and replacement care, it’d
be a real struggle, particularly when you look at that the things
that someone with dementia needs from social care are often more
expensive per se than otherwise. So, you want to try to make sure
that they’re having the same person going into the
home—providing that continuity and providing the extra
training to make sure that they’re aware of how best to
interact with and support someone with dementia. Unfortunately,
we’re seeing a situation where the costs of delivering social
care are increasing—the statutory costs—so, pension
auto-enrolment, the scrutiny of travel times as well as inflation,
but what’s not increasing, and is actually decreasing in
almost every local authority, is the per hour amount that local
authorities are funding providers of social care. For us, until
those sorts of issues in commissioning are tackled, we’re not
going to see social care meeting the needs of people and carers
generally, but including the carers of people with dementia.
|
|
10:30
|
|
[219]
Dawn Bowden: So, it’s the gap in social care that’s
the big concern, really, for delivering it.
|
|
[220]
Mr Rees: For us, yes, and I think that, when you look at the
role social care plays in keeping carers well and healthy, and
keeping people out of hospital, it’s one of the fundamental
things in keeping people at home and well for longer that the
strategy talks about.
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|
[221]
Dawn Bowden: Sure. Okay.
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[222]
Ms Lewis: I would agree with Keiron’s concerns. The one
thing I will hope, or one thing I sense, is that there is a real
will to change now. There is real will among healthcare
professionals to make these improvements. So, I hope the draft
strategy will drive that change. Obviously, without the funding
allocated to it, it’s going to be increasingly very difficult
to achieve, with the problems with social care, but we hope that
where there’s a will, there’s a way, and having a draft
strategy there and some sort of vision that people will be able to
see, and make the changes that they are able to—. But without
the funding behind it, we have got real concerns.
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|
[223]
Dawn Bowden: Okay. Thank you, Chair.
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|
[224]
Dai Lloyd: Diolch yn fawr. Dyna ddiwedd y cwestiynu. Felly,
dyna ddiwedd y sesiwn dystiolaeth yma. A gaf i ddiolch yn fawr iawn
i chi’ch dau am eich tystiolaeth ysgrifenedig a hefyd ar
lafar y bore yma? A gallaf i bellach gyhoeddi y byddech chi’n
derbyn trawsgrifiad o ran yma’r cyfarfod er mwyn i chi
gadarnhau ei bod yn ffeithiol gywir? Felly, diolch yn fawr iawn i
chi, ac a gaf i gyhoeddi i fy nghyd-Aelodau y cawn ni egwyl fer
nawr tan 10:40, pan ddeuwn ni nôl i gadarnhau’r
cwestiynu am y ddwy sesiwn nesaf? Felly, 10:40. Diolch yn
fawr.
|
Dai Lloyd: Thank you very much. That
brings us to the end of our questioning, and so to the end of this
evidence session. May I thank you both very much for your evidence,
both written and orally this morning? May I therefore tell you that
you will receive a transcript of this part of the meeting so that
you can confirm that it is factually accurate? So, thank you very
much, and may I tell Members now that we’ll have a short
break till 10:40 when we will return to confirm the questioning for
the next two sessions? So, that’s 10:40. Thank you very
much.
|
|
Gohiriwyd y cyfarfod rhwng 10:32 a
10:48.
The meeting adjourned between 10:32 and 10:48.
|
|
Ymchwiliad i
Strategaeth Genedlaethol Ddrafft Llywodraeth Cymru ar
Ddementia—Sesiwn Dystiolaeth 3—Coleg Brenhinol y
Seiciatryddion a Choleg Brenhinol yr Ymarferwyr
Cyffredinol
Inquiry into the Welsh Government’s
Draft National Dementia Strategy—Evidence Session
3—Royal College of Psychiatrists and Royal College of General
Practitioners
|
|
[225]
Dai Lloyd: Bore da. Croeso i’r drydedd sesiwn
dystiolaeth am y bore. Fel y bydd gwrandawyr cyson yn ymwybodol,
hwn ydy ymchwiliad y Pwyllgor Iechyd, Gofal Cymdeithasol a
Chwaraeon i strategaeth ddrafft cenedlaethol Llywodraeth Cymru ar
ddementia. Fel rydw i wedi crybwyll eisoes, hwn ydy trydedd sesiwn
dystiolaeth y bore. O’n blaenau ni rŵan mae Coleg
Brenhinol y Seiciatryddion a hefyd coleg brenhinol y meddygon
teulu. Felly, croeso.
|
Dai Lloyd: Good morning. Welcome to
this third evidence session this morning. As our regular viewers
will be aware, this is the Health, Social Care and Sport
Committee’s inquiry into the Welsh Government’s draft
national strategy on dementia. As I’ve already mentioned,
this is the third evidence session this morning and, before us, we
have the Royal College of Psychiatrists and also the Royal College
of General Practitioners. So, welcome to you.
|
|
[226]
Rydym ni wedi derbyn gwybodaeth,
tystiolaeth ysgrifenedig, gennych chi, felly diolch yn fawr iawn am
hynny. A gaf i groesawu Dr Victor Aziz, cadeirydd cyfadran yr
henoed yng Ngholeg Brenhinol y Seiciatryddion yma yng Nghymru, a
seiciatrydd ymgynghorol yr henoed ym Mwrdd Iechyd Lleol Cwm Taf?
Bore da ichi. A hefyd, a allaf groesawu hen ffrind, Dr Jane
Fenton-May, o goleg brenhinol y meddygon teulu? Bore da, Jane.
Rydym ni wedi darllen y papurau gerbron. Awn ni’n syth i mewn
i gwestiynu, gan gofio nad oes gennym drwy’r dydd, yn
anffodus. Mae amser ychydig bach yn dynn ac, felly, i’r perwyl hwnnw, fe wnaf i ofyn i
Julie Morgan agor y cwestiynau.
|
We have received your written evidence, and
thank you very much for that. So, may I welcome Dr Victor Aziz, the
chair of the old age faculty of the Royal College of Psychiatrists
in Wales and a consultant psychiatrist in Cwm Taf Local Health
Board? May I also welcome my old friend Dr Jane Fenton-May, from
the Royal College of General Practitioners? Good morning, Jane. Now
we have read the papers that you’ve sent us, so we’ll
move straight into questions, bearing in mind that we don’t
have the whole day, unfortunately. Time is a little tight and,
therefore, I will ask Julie Morgan to begin the questioning.
|
|
[227] Julie
Morgan: Thank you. Good morning.
|
|
[228] Dr Aziz:
Good morning.
|
|
[229] Dr
Fenton-May: Good morning.
|
|
[230] Julie
Morgan: The first question I wanted to ask was: how do you feel
that the provisions in the Bill will be equitable in order to deal
with people from different groups, such as issues to do with
sexuality, disability and ethnicity? Do you think the provisions in
the Bill are sufficient to ensure those groups are reached?
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|
[231] Dr Aziz:
For me?
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|
[232] Dr
Fenton-May: Do you want to start?
|
|
[233] Julie
Morgan: Either.
|
|
[234] Dr Aziz:
Anyone?
|
|
[235] Julie
Morgan: I don’t mind.
|
|
[236] Dr
Fenton-May: Please help yourself.
|
|
[237] Dr Aziz:
Okay. Thank you for inviting us. I think the principles generally
are welcomed. However, in our submission we did say that it
doesn’t really meet everyone’s needs. We did say that
there needs to be an emphasis on different groups, in our
submission, that, actually, you feel it’s like I’m
mentioning it without meaning it. So, we want it to be meaningful
to those minorities and in groups like the prison
service—lots of groups were mentioned. Actually, they are not
really properly mentioned in the document. But, if I may, I think
it’s very nice to have a strategy. It’s very nice to
have an overarching document, but, at the end of the day, we are
dealing with individual patients. I believe that the needs of that
individual patient need to be the most important in this document
regardless of where they are. I think that that’s a bit
missing. So, individual needs are different from one patient to the
other. Individual needs are different—as we were talking
earlier—from one valley to the other. The population needs
are different in different areas. That’s really the most of
what we deal with. It’s about patients and carers. There is
emphasis, for example, on ethnic groups and carers, but, actually,
there’s not that much emphasis on them. How are we going to
support them? How are we going to become meaningful to provide and
meet their needs? That’s a very important thing that,
actually, we need to emphasise more in the document.
|
|
[238] Julie
Morgan: Thank you.
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|
[239] Dr
Fenton-May: I would agree with that. I did put an example in
there about—. I used to work in Butetown—I retired a
couple of years ago—as a GP. We used to have link workers in
the Butetown health centre who, if you could get hold of them, were
really good at translating, particularly for our elderly Somali
population. But actually getting them to come on home visits was
difficult, and the service was cut. They were mostly going into
secondary care and supporting patients going to appointments.
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|
[240] Now, with
anybody who has dementia, things that are learnt more recently are
forgotten. So, even if these people have learnt English or Welsh,
they’re more likely to forget that, and so caring for them is
very difficult and they need the one-to-one support and care in the
languages that they understand. We’ve got other populations.
We’ve got an increasing, large Polish-speaking population.
We’ve got lots of other Asian populations that speak
different languages in Wales, as well as the issue about the Welsh
speakers that need support in Welsh because that is their first
language. So, they’re not necessarily looked after.
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|
[241] It’s not
just the medical bit; it’s much, much more important to get
that social care input. Because, if you’re put into a care
home and you don’t understand anybody that’s talking to
you, that is difficult. Actually, for our English-speaking
population, and for some of the care homes, it’s very
difficult because the population of carers are not necessarily very
good at speaking English. So, we need to address some of those
issues around language. I haven’t got any summations, but
I’m just highlighting that it is difficult, and it is
particular for the demented group of patients because they lose the
tolerance to cope with the difficult-to-understand person
that’s trying to support them, because they haven’t got
very much tolerance sometimes anyway. That escalates then into
behaviour problems, and then we’re into the realms of
thinking, ‘Oh, what are we going to give these
patients?’, and somebody comes up with a wonderful idea of
giving them antipsychotics, which basically is a medical clubber,
so—
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|
[242] Dai
Lloyd: Don’t worry; we’ve got questions on that
later on. [Laughter.]
|
|
[243] Dr
Fenton-May: I’m sure you have, but I brought them up
there.
|
|
[244] Dr Aziz:
Can I add something relevant there as well? It’s not just
about the language; it’s the culture. And, again, I’m
not talking about just us or healthcare or social care, or even in
schooling, because if you don’t understand the culture from,
really, education upwards, work and all sorts of things,
you’re actually going to misinterpret a lot of the problems.
I think our medical schools—for example, our
training—doesn’t really—. We used to, at some
point, emphasise the doctor-patient relationship and would say
it’s triangular, because of the family and that cultural
background. If you don’t understand, you are going to
misperceive a lot of things. That’s also a bit missing
there.
|
|
[245] Julie
Morgan: I think you’ve both made the point very strongly
that you feel there should be more emphasis in the strategy on
these issues.
|
|
[246] Dr
Fenton-May: Can I just come back to some of the other issues?
We’ve talked about ethnic people. I think some people who
have physical and mental health problems get a rough deal, so
that’s really—. That was your question, sorry. Because
they neither fit easily into the physical problems or the mental
health problems, and people push the wrong—. You know, they
fall in-between, and I think there’s a big issue about people
who have got different—. The trans population and things like
that, because they find it much more difficult sometimes, or the
carers find it much more difficult, to interact with them, and they
then perhaps have difficulty receiving the support that they feel
is—.
|
|
[247] Angela
Burns: Sorry to cut across there; I know we’re tight on
time, Just to extrapolate that slightly more, do you think that, in
this draft strategy, there’s enough mention made of people
with learning disabilities and mental and physical health
disabilities? Julie’s really identified one particular group
of people who need protection and help. Do you think that there
might be a sense that dementia is seen as a mental health issue,
which is why it’s not being pulled out separately?
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|
[248] Dr Aziz:
I think we need to be a bit careful there because dementia, for
example—I’m talking as a psychiatrist—is about
50, 60 per cent of the work of old-age psychiatry. And again, in
our training, we put a lot of emphasis on the integration between
physical and mental health. And one way forward—. I had the
luxury of rewriting the curriculum of old-age psychiatry that is
going to be submitted to the GMC in March and, actually, we put
black and white targets in the curriculum to meet physical health
needs, chronic conditions, end-of-life care, palliative care,
because we are saying that the way forward is about proper
integrated care. There is mention of integrated care, but, in
Wales—I looked at the UK and Welsh Governments; all sorts of
things, actually—there is a lot about integration, but it
hasn’t happened. So, in health boards, there is still a bit
of disparity between primary and secondary care. There is a bit of
a problem between secondary and secondary
care—‘That’s your patient; that’s my
patient’, although they are in the same hospital.
|
|
[249] So, I think
there is a lot of work to be done about integration, and, if
we’re really talking about proper integration, it means we
are all one team. And, sorry to say, it needs to come from the top
down. So, we haven’t integrated, not just in health—we
haven’t integrated properly between social and health. So, we
are still talking about these things, but we actually haven’t
implemented it properly. So, there are issues, and the solution is
there; it’s just how people can link together, how people can
work together. It’s not a competition. Coming back to my
point about the patient being at the centre, we are missing that,
while putting in lots of boundaries. Even by funding things,
we’re creating boundaries. It needs to be meaningful.
|
|
[250] Dai
Lloyd: Okay. Julie, your second question.
|
|
[251] Julie
Morgan: Yes, I was going to ask you about rurality and how you
think—. I mean, do you think the provisions for coping with
people in rural areas are adequate in this strategy?
|
|
[252] Dr Aziz:
I think there are two issues. One, we are missing the workforce
intelligence. There has been a lot of work done in Wales about
workforce intelligence by the Royal College of Psychiatrists. And,
again, rural areas are being affected because we are not really
thinking about them. ‘What is the incentive for me?’ I
don’t mean any negative thing, but we are actually
advertising for new GP trainees to come, we pay them more, and we
say, ‘You’re not going to do on-calls’ and these
things. So, actually, there is an incentive to come, but
we’re not giving the same incentive to nurses, to social
workers, to medics, to anyone, to cover rural areas.
|
|
11:00
|
|
[253] And, again, the
second point in helping the situation is how we can encourage local
people locally to stay local, because, again, we want to increase
the retention that is not happening now. So, it’s not just
about recruitment; we’re not retaining the staff in the rural
areas, which is another problem adding to the workforce
problem.
|
|
[254] Culture—we
are very often now in the blame culture. I was talking to one of
the senior nurses yesterday as a matter of fact, and I said that
every little thing now is registered as a complaint when it’s
not a complaint, so the staff feel really very defensive. Rather
than say that, we need to change to, ‘How can we support
you?’, ‘How can we develop you?’, ‘How can
we make you perform better in a supportive way?’,
‘Don’t worry about that mistake, we all make
mistakes.’ And when people feel that, maybe the issue about
rural areas is going to be recovered by encouraging those people
that, actually, they are valued.
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|
[255]
Dai Lloyd: Ocê. Mi wnawn ni symud ymlaen achos mae
yna nifer o’r rheini yn dilyn mewn cwestiynau sydd i ddod.
Mae Rhun yn mynd i ofyn y cwestiynau nesaf. Mae’r
rheini’n rhannol wedi cael eu hateb hefyd.
|
Dai Lloyd: We’ll move on because
a number of those issues are covered by subsequent questions. Rhun
is going to ask the next questions, which have partially been
answered.
|
|
[256]
Rhun ap Iorwerth:
Ydy, wel, yn sicr gennych chi. Tybed
a fydden ni’n gallu cael sylwadau y coleg meddygon teulu
ynglŷn â’r agenda integreiddio rydym ni wedi bod
yn ei drafod yn y fan honno, a’r pwysigrwydd o sicrhau
integreiddio rhwng gofal iechyd a gofal cymdeithasol, er mwyn rhoi
i ni’r llwybr gofal cyflawn yna y mae cleifion ei
angen.
|
Rhun ap Iorwerth: Yes, certainly by
you. I wonder if we could have some comments from the Royal College
of General Practitioners on the integration agenda that we’ve
been discussing there, and the importance of ensuring integration
between healthcare and social care, in order to provide us with
that full care pathway that patients need.
|
|
[257] Dr
Fenton-May: I think it’s really important that we do get
some sort of integration, but, at the moment, I think the biggest
problem is the different silos that the funding is in. So,
currently, if somebody’s regarded as needing care as opposed
to healthcare, there’s a big fight that goes on over the
patient, about, ‘I don’t want to pay this; I
haven’t got enough budget to cover this patient’. So,
we need to integrate it, we need to smooth it out. And, in some
areas, there has been drawing together of people. I think in the
Gower they’ve got a unit that has got social care and nursing
care going to visit people to try and keep them out of hospital,
and I think that’s working quite well, and they’ve
pooled their budget and things. But it needs to be done on a
localised basis, and it needs to cover the whole of social
care.
|
|
[258] In general
practice, for example, we see people from small children to old
people, and, if you pick up the phone because there’s an
issue about social care, can you get the right social worker,
because there’s a psychiatric one, and there’s an old
people one? And if they’re two weeks off their birthday, they
fall into a different bucket. It’s really difficult, and
nobody will see them until they do that. So, we need to take away
those barriers to care, and, as I say, that helps with people
who’ve got physical and mental problems as well.
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|
[259] Rhun ap
Iorwerth: What can this strategy do though, because I think
we’re all probably frustrated here about the lack of
integration between health and social care? Sadly, I doubt that
this dementia strategy is going to be the answer to the whole
integration agenda, because it’s not just about dementia;
it’s about the whole health and care system. What can this
strategy do, either to propose specific reconfiguration or to
direct the implementation of best practice? What might that be in
this specific strategy?
|
|
[260] Dr
Fenton-May: I suppose if you did get the budgets coming
together for these workers, some of them could be—. You know,
we have healthcare assistants. They could equally be working for
social care as opposed to qualified nurses. Yes, you need the
qualified nurses, but we need that broader base of workers that
support the professionals, both social workers and health workers.
And the budgets need to be combined and unified somewhere and there
isn’t any mention of that, because the trouble is that the
councils are having their budgets squeezed and so they want to draw
in and reduce the amount of provision of social support for
patients.
|
|
[261]
Rhun ap Iorwerth:
And this pooling of budgets is something
that’s coming through in other pieces of evidence. Do you
have anything additional to add on that?
|
|
[262]
Dr Aziz: That’s absolutely essential to remove this
competition, but there is something else very important. Again,
there are so many competing—something we’re talking
about as well—targets in Wales and very often, there are so
many competing policies. We just mentioned that recently I made
some comments about the primary care inquiry, but hang on, there is
primary care there and dealing with dementia is still part of that.
Why is there no link? Why is there no link with the social care
Bill? Why are we having so many competing targets that are actually
taking me away from looking after the patient, taking the nurses
away from looking after the patient, and becoming a tick-box
exercise? We all measure how many care treatment plans we complete,
but we are not really looking at the quality of what we provide.
So, all of these targets are taking us away from patient care. So,
we need longer-standing policies that become sustainable rather
than keep changing every two years—move the target and move
something else. We need to have the same focus, I think.
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[263]
Rhun ap Iorwerth:
Okay. A quick response each perhaps on
another target, which is important. We have picked up as a
committee, I think, a frustration about the target in terms of
increasing diagnosis rates in Wales. We’re low now. The draft
strategy talks about increasing at a rate of 3 per cent annually.
We’re hearing lots of people saying that we should be aiming
higher. What are your thoughts?
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[264]
Dr Fenton-May: My concern is that some patients who have obviously
early dementia do not want to be labelled with that because of the
implications for all sorts of reasons. What is the point of giving
them a label if we can’t give them any care and support,
because, you know, you give them a label and they say, ‘What
are you’re going to give me, doc, to help me?’, and you
say, ‘Well, you can go to the clinic and they might give you
a diagnosis’? And there’ll be very limited care,
particularly in those early stages. At the moment, we haven’t
got magic wands for improving people’s memory loss.
We’ve got various things that we can do to help support them,
but they don’t necessarily need the diagnosis of
dementia.
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[265]
Rhun ap Iorwerth:
So, diagnosis isn’t that important
to you in terms of something that we should be—
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[266]
Dr Fenton-May: It is important in some ways because at some stage
they do need that label so that they can get the support, but for
some people in the early stages, it may be that they’re just
really anxious and they’ve got a bit more memory loss and
there’s that blurring of dementia with other anxiety memory
loss things. We all forget things more as we get older, but
we’re not demented so that it’s difficult. Once
somebody’s got proper dementia, then they need that diagnosis
and they need the package of care, but a lot of people in the early
stages say, ‘Well, I’m just a bit forgetful’, and
they don’t want a label. And you can’t force them to
have a label.
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[267]
Dr Aziz: I’ll be very brief. I think the term
‘diagnosis’ is important. Timely and appropriate and
accurate diagnosis is really, really important. It’s very
important for that diagnosis to be done by a specialist who is able
to make that diagnosis. One of the sayings in the dementia strategy
is that a dementia assessment must be completed by a suitably
competent professional. Who’s that? Who can make that
diagnosis appropriately? Are we talking about an appropriately
trained specialist like a psychiatrist or are we talking about an
assistant healthcare professional? So, that’s really very
important. On the other hand, the strategy is actually about
specialities or specific speciality services.
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[268]
Rhun ap Iorwerth:
Are you as sanguine as the general
practitioners about the need, as we hear from other witnesses, to
push up diagnosis rates?
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[269] Dr Aziz: It can
be done, but it’s about how we’re going to do it
and who has got the confidence to do it. For example, one of
the ways, in my heart, I wanted to do it is—. For example, in
Wales, there are clusters, and I said, personally, I would d be
more than happy to have a clinic in a cluster, so that, actually,
we’re all working together and we’re all supporting
each other. Geriatricians very often refer to us rather than just
making the diagnosis. Neurologists very often refer to us. How can
we encourage all these people, all those professionals who are
specialists in their field, to make that diagnosis, to have that
confidence? It’s not about the 2 or 3 per cent, it’s
about having that confidence and those appropriate skills in making
that diagnosis. If we do that, automatically the rate is going to
go up, but if we just push it as a target, it may not work.
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[270]
Rhun ap Iorwerth:
Okay, thank you.
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[271]
Dai Lloyd: Okay. Lynne, on this point.
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[272]
Lynne Neagle: Are you saying, Dr Aziz, that there’s a risk
then, with the strategy worded as it is, that we could get
inappropriate people providing diagnosis.
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[273]
Dr Aziz: I have waited, for some patients—which is
actually frustrating for them—two years to make a diagnosis.
Why? Because they didn’t fit in. In the last two years,
I’ve had four patients who did not fit in any box—four
younger onset dementia—and I had to diagnose unspecified
dementia. All sources of investigation, including genetic testing,
came back as negative. So, clearly, they are dementing, but
actually—. Sometimes people want to say vascular or
Alzheimer’s, but that’s not the most important thing.
You still need to meet that individual—
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[274]
I’ve had neurologists quickly
diagnosing Alzheimer’s disease but, when the brain scan
comes, it’s very, very vascular, and I’ve had to go
back to the patient—it’s actually a wrong diagnosis.
Those are the appropriate skills that we are trained for for years.
If you’re making a quick, inappropriate diagnosis—.
You’re talking about people. I’ve had to,
unfortunately—. If you see younger onset dementia, people
have to leave work, stop driving—they have families—.
Financial problems—some have lost their houses because they
couldn’t afford the mortgage. Transport, housing, all sort of
things—. That’s a complex thing to deal with. Unless
you are a specialist or have those skills, it’s going to be
very inappropriate.
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[275]
Dai Lloyd: Okay. Time is marching on now, team, and
there’s several questions. Short questions, short
answers—young Jayne.
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[276]
Jayne Bryant: Thank you, Chair. Dr Aziz, you’ve mentioned
some of the issues for primary care in terms of identifying people
who may have dementia. Perhaps you can talk a little bit more about
managing that and providing treatment for them and the challenges
they face. Also, in your evidence, there’s a recommendation
that all hospitals and primary care settings should achieve
dementia-friendly status by 2021. Perhaps you could say a little
bit more about that.
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[277]
Dr Aziz: Again, I think, very often, dementia now is
everyone’s business. It’s not that—. I’ll
answer the last bit first. I had a conversation with a
consultant—and this is a consultant psychiatrist—who
was saying, ‘Actually, I have no skills; I don’t know
how to deal with a patient with dementia.’ So, imagine the
wider picture within the health and social care
setting—‘I don’t want to deal with anything to do
with dementia.’
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[278]
Unless you raise that profile and unless
you remove that stigma among us that, actually, this is not—.
With cancer, we’ve done it. So, now we are dealing with
cancer and we have no fear of cancer. Why are we having this fear
of dealing with people’s dementia? So, we really need to be
behind that agenda, across all of us. We need to work
together.
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[279]
Again, talking about primary care, there
is something in my mind I’m actually planning to do in
tackling this particular thing—we’ll talk about it.
I’ve spoken to Cardiff University and I’m having a
serious conversation with the Royal College of Psychiatrists about
doing a postgraduate certificate over a weekend for healthcare
professionals—about dealing with an elderly person from all
sorts of aspects, about increasing awareness, about increasing the
training package, and not just focused on dementia or something.
It’s about everything. It’s about primary care—in
primary care, what are the sorts of things they deal with?
It’s not only the comorbidities—actually, primary care
is not only the GP. Primary care is all sorts of things. In the
community—the community pharmacists, the non-pharmacological,
the district nurses, the health visitor, and all those sorts of
people. How can we skill them to deal with those issues? And again,
the focus is support. If we don’t work together,
we’re not actually going to achieve
anything; we’re still going to be talking. So, really high on
my agenda is how we can work together and how we can we increase
this training, without being fearful and without being intrusive,
in a meaningful way.
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|
11:15
|
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[280]
Jayne Bryant: Thank you. The proposed waiting time target of 28
days for a first assessment and 12 weeks for a working preliminary
diagnosis—what are you views on that?
|
|
[281]
Dr Aziz: I’ll tell you something very quickly: I have no
issue. But do you know how long a patient is waiting for a brain
scan? A patient may be waiting, if you are looking for a CT scan,
up to two months and the report can take one to two months to come
back. If you are looking for an MRI scan—if you are GP
referring it, it will take longer. If you’re looking for an
MRI scan, it will take longer. So, it’s not about the
duration, it’s about what else—. We have nurses who can
do the pre-screening. My personal waiting list is eight weeks, and
I have—[Inaudible.]—19. I discharge a lot of
patients because I say, ‘If you want a diagnosis, I’m
quite happy to give you all that information, on all the diagnoses,
but what can I do? So, how can we support you? How can we support
the GP? How can we provide the support that actually helps you
cope?’ Alzheimer’s, for example—in the targets,
every single one is going to have a support worker. Is that
appropriate? Or a dementia adviser—whatever you want to call
it—or, actually, is it about that patient’s needs? They
may need far, far more than just someone to give them any support,
or they may need just a phone call—‘How are you?’
So, I think we need to think differently about that.
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|
[282]
Jayne Bryant: So, just on your point about the dementia support
workers that you’ve just mentioned there, do you believe the
current level of funding is sufficient to meet that? Do you think
they’re anywhere near the numbers that you think
that—?
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|
[283]
Dr Aziz: It’s very unrealistic. If you see the amount of
patients we see. We were talking about the word ‘well’.
So, actually, if we are going to offer it to every single person,
we haven’t got that workforce. It’s very unrealistic.
But also, there is another thing I’m actually going to
mention specifically: advocacy. In the measure we spoke about how
everyone should have an advocate—again, unrealistic. But
where is the family? What is the role of the family as an advocate?
What is the role of the family that we are missing in this
document? Actually, they are doing everything. They have the
burden. They carry the burden—they carry everything. Why are
we waiting until they collapse and there is a crisis? Why?
It’s: ‘You don’t fit the criteria.’ So, I
think that rather than focusing on wording, it’s mainly
making it meaningful to that particular individual.
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[284]
Jayne Bryant: I think that’s particularly powerful evidence
when you’re talking about the role of the family and carers.
Just briefly, you’ve mentioned on a number of occasions in
responses to others the importance of working collaboratively with
others, but what do you think the value of case finding is to
health boards and local authorities that they’ll be expected
to implement? Do you think there’s any value in
that?
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[285]
Dr Aziz: It’s all of our job, but it’s not just
about dementia. As I said, a minimum of 40 per cent of our work is
on depression, and, actually, diagnosing depression accurately to
be able to do something about it. I have patients who are actually
having a grief reaction being referred straight away. So, actually,
that’s normal, so, again, I think the focus of case finding
is fine, but it’s all our job. So, it’s identifying the
problem correctly and appropriately; that’s the main
focus.
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[286]
Dai
Lloyd: Ocê. Mae’r ddau gwestiwn nesaf o dan law Caroline
Jones.
|
Dai
Lloyd: Okay. The next two
questions are from Caroline Jones.
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|
[287]
Caroline Jones:
Diolch, Chair. Good morning. What do you
think we need in hospital settings to better meet the needs of
patients with dementia? And do you think that the draft strategy
will address this?
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|
[288] Dr Aziz: There
is not much emphasis on physical health and comorbidities, and,
again, one of the biggest problems in an elderly person is multiple
comorbidities and the multiple medications. Who’s going to be
appropriately reviewing those medications? Who’s going to be
appropriately managing all of these conditions? Very often—.
I’ll give you a simple, practical example: one of my
patients, who is actually currently an in-patient, has
dementia—she has Alzheimer’s disease—she’s
on medication. She had urinary tract infections and a chest
infection. She was admitted to a general hospital, and actually, in
one incident there was a conflict with the nurses, and then,
because of that conflict, she was detained under the Mental Health
Act and she was transferred to a psychiatric ward. So, have
we addressed her needs?
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|
[289] Caroline
Jones: No.
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|
[290] Dr Aziz:
No. So, just because you have dementia, doesn’t mean
you’re not falling; doesn’t mean you haven’t had
heart problems, chest problems or other needs that need to be
addressed. So, again, there are two ways. Again, we are talking
about integration, working together; it’s not about shifting
the patient. How many times do we shift patients from one ward to
another, from a district hospital to a community hospital, to a
psychiatric ward, to a nursing home, to another nursing home?
Again, I think our focus is not just about targeting, it’s
about how we can improve that worker relationship. How can we have
that patient focus?
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|
[291] Caroline
Jones: Yes. What about the communication between the
departments?
|
|
[292] Dr Aziz:
But, how often do we e-mail each other rather than picking up the
phone? I actually spent three days fighting for a patient to be
admitted with uraemia to the general site—three days. The
patient stayed 36 hours in A&E—a patient who was nearly
dying, just because he was labelled mentally ill, was 36 hours in
A&E, with no bed, and I fought for three days. So, that’s
really the focus of the care. We need to really—.
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|
[293] One of the ways
forward is—. We did actually say it several times in
different meetings. The Royal College of Psychiatrists’
accreditation for in-patient mental health services programme
actually provides a fantastic way forward, because it provides you
with structure across district general hospitals, across memory
clinics, across psychiatric wards. If you apply them—. We did
it with electroconvulsive therapy across the whole of Wales. If we
use one structure, standard, across the whole of Wales, we’re
going to have a better quality of care than just waiting for that
person to do something different to the other person.
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[294] Caroline
Jones: Thank you for that.
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|
[295] Dai
Lloyd: Okay. Your second question, Caroline, because it applies
to GPs.
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|
[296] Caroline
Jones: Yes. On the views of the Royal College of General
Practitioners on whether the implementation of the direct enhanced
service is the best way to improve healthcare for care home
residents. What are your views on this?
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|
[297] Dr
Fenton-May: I don’t know what the details of the enhanced
service are, so I can’t make any comments about that.
Ideally, we need to enable it to—. At the moment, you have to
have a certain number of patients in a care home, as a GP practice,
in order to qualify for it, and there are a couple of tick-box
things that you have to do. But the workload involved in minding
patients in care homes is great, and along with that is the
education of the care home staff in how to manage the patients. So,
it needs to be enhanced quite a lot, I think is the problem, in
order to make it effective.
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|
[298] There are a lot
of issues about how you manage people with multiple comorbidities
and review all their medication and make sure that they’re
actually not treating patients with inappropriate drugs for them in
that setting; and preventative treatment when they’re
actually beyond the number of years that will make much difference
to enhancing their lives.
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|
[299] The other thing
is we need to make sure that there are sensible care plans for
these patients that are developed with the patients and their
families—and not all patients will be demented, so they will
have some input—so that we can advise how to manage those
patients and potentially keep them out of hospital, which is one of
the problems. Sometimes, these patients shouldn’t be going to
hospital in the first place and when they are in hospital, we need
to be able to get them home as quickly as possible. They need to be
assessed by somebody and have some sort of management plans. If
they’ve got uraemia, maybe they don’t need to go into
hospital to start with; if they’re end-of-life, there needs
to be some plan about that. But if they do need assessment and
treatment, to get that up and running and get them back to wherever
they came from—a care home or their own home—because
the chances of them getting much more confused, depressed and
everything else will be reduced if you can get them back into the
normal environment where they normally live, with the people who
they know are supporting them.
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[300] One of the
problems is, sometimes, there are so many carers going to people
and they’re changing all the time. I went to one meeting and
one person had had 60 different carers in one month.
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[301] Dr Aziz:
And the companies change.
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|
[302] Dr
Fenton-May: So, there needs to be consistency of care with
social care as well as the medical care. We have a big problem with
communication—patients will be discharged from hospital and
you quite often don’t know what’s happening,
particularly if they go into a different place. So, they went from
home to hospital to a care home, and their old GP will get the
discharge summary, so it take a while to get the notes of that
patient and to find out all of the previous history. So, we need to
improve that communication across the board and keep them out of
hospital, if we can, by improving the care they get in the
community.
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|
[303] Dai
Lloyd: Okay, moving on to a big topic: antipsychotic medicine
and allied things. Lynne.
|
|
[304] Lynne
Neagle: Antipsychotics weren’t developed for people with
dementia and often aren’t licensed for people with dementia
and they also have very risky side effects for people with
dementia. In view of that, why do you think we are still seeing
antipsychotics being prescribed both in the community and in
hospital settings, and do you think that this strategy will do
anything to tackle that problem?
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|
[305] Dr Aziz:
No. The simple answer is ‘no’. For the past three
years, we’ve been working with the older persons’
commissioner, with the Royal Pharmaceutical Society, with different
groups, with different publications about antipsychotics. For the
past three years, I have been requesting, myself, a national
audit—the same as the memory clinics audit—of the use
of antipsychotics, again covering care homes, primary care,
secondary care and DGHs, but it hasn’t happened and it was
declined. So, in a way, if you don’t know—
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|
[306] Lynne
Neagle: Who declined it? Was it the health board or—?
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|
[307] Dr Aziz:
In the discussion, generally, across different groups in Wales. So,
we did raise the issue. Because, again, on one hand it’s not
about the use of antipsychotics; it’s about the appropriate
use of antipsychotics. Again, very often, they are used very
appropriately, but you want to reduce that inappropriate use with
the side effects. So, if I’m going to use an antipsychotic
because I don’t like the patient or the patient is a bit
agitated, that might be inappropriate. But, the patient is
psychotic, the patient is extremely aggressive or something, so
that’s an appropriate use and there are guidelines about
that, but we don’t know the extent of the problem. We
don’t know even who’s prescribing the antipsychotics.
I’ve done, for three consecutive years in my area, an audit
of antipsychotic use in care homes. I don’t know who
prescribed them. I didn’t prescribe a lot of them. They may
have come from the DGHs, but who prescribed them, no-one knows.
There are different GPs and, again, we had different locums as
well, so we don’t know who started it. That record is not
there and why it started, what is the target symptom is not
there.
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|
[308] So, I think we
need to find out the extent of the problem and the pattern of that
prescribing. There have been lots of publications, lots of
guidelines, about their use, so we need, really, to think about
that. And what is the alternative? Because, again, sometimes we all
love to have behavioural, psychological, non-pharmacological
interventions, right? Is it available? Is it available for care
homes, is it available for everywhere? If you haven’t got any
alternatives to those antipsychotics, what are the guidelines, what
are the bits and pieces you can use? So, it’s bigger than
just the simple use of antipsychotics. We need to really understand
the process before we can tackle the outcome.
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[309] Dai
Lloyd: It’s bigger than this morning’s session as
well because we’re going to have a full review just on
antipsychotic medication.
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|
[310] Dr Aziz:
Perfect. I’m more than happy to come and talk to you.
|
|
[311] Dai
Lloyd: Well, I think you’ve probably talked yourself into
a session. [Laughter.]
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|
[312] Dr
Fenton-May: If I could join in there, there is talk about
providing occupational therapy for older people’s wards. We
need the same availability for people in their own homes, who are
often sat there by themselves for long hours with intermittent
visits, and people in nursing homes, who more and more seem to be
left in rooms by themselves with little input from the staff, or
put in front of the television that they can’t follow the
story of. The staff are watching the television, they’re
excited because they’re watching whatever it is, the soap
that they like, but the patients—
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|
11:30
|
|
[313] Dai
Lloyd: They could be watching this. [Laughter.]
|
|
[314] Dr Aziz:
Yes.
|
|
[315] Dr
Fenton-May: They could be watching it. [Laughter.] The
patients have got memory loss, and they can’t follow the
story, I’m sorry—it’s very difficult.
|
|
[316] Dr Aziz:
Yes, true. Can I—very quickly?
|
|
[317] Dai
Lloyd: Briefly, yes.
|
|
[318] Dr Aziz:
Both of you mentioned something important—antipsychotics in
care homes. There was documentation—. There was, I think, a
consultation a few years back within the Welsh Government about
care homes and removing the categories. I don’t know what
happened to that, because, again, the whole idea about
funding—again, coming to funding, coming to antipsychotics in
our care homes—if we have care homes full stop, and the focus
is on the individualised care plan, the patient doesn’t
really need to move from that care home because there is no
category. There is no elderly mentally infirm nursing, there is no
residential, there is no such thing, it’s about the patient.
So, maybe, if we go back to this documentation and focus on that
individualised care plan, it might be the solution.
|
|
[319] Dai
Lloyd: That may well happen with this review. Angela, training
questions.
|
|
[320] Angela
Burns: Just a really quick question: given the scale of
dementia and how it’s now proving, I think I’m right to
say, to be the biggest killer of people than anything else, do you
think that we should do more to embed dementia training in the
basic training for doctors, nurses, allied healthcare
professionals, et cetera? What would you recommend?
|
|
[321] Dr
Fenton-May: Yes.
|
|
[322] Dr Aziz:
Yes.
|
|
[323] Dai
Lloyd: Excellent—that’s the sort of answer I
like.
|
|
[324] Dr
Fenton-May: Can I say that the Royal College of General
Practitioners was funded by the Welsh Government to put together
some very excellent training for GP practices? That was aimed at
ensuring that the whole practice—not just the
doctors—got the training. When we ran that in our surgery,
the most important people who were there were the receptionists.
They came along during the training and said, ‘Well,
we’ve got these patients who keep coming backwards and
forwards, saying, “I don’t know if I’ve got my
own medication”’, and we identified quite a number of
people through that. So, you need the front-line people and you
need the community, and it goes back to the dementia-friendly
society.
|
|
[325] Dr Aziz:
So, it’s there—implement it.
|
|
[326] Dr
Fenton-May: Yes.
|
|
[327] Angela
Burns: Thank you.
|
|
[328]
Dai Lloyd: Mae’r cwestiynau olaf o dan law Dawn
Bowden.
|
Dai Lloyd: The final questions are from
Dawn Bowden.
|
|
[329] Dawn
Bowden: Diolch, Chair. You talked in your evidence earlier on
about pooling resources between health and social care. As Rhun
said, we’ve heard that evidence from several sources, but
that’s not going to happen anytime soon—certainly not
immediately and certainly not within the timescale in which
we’re looking at implementing this strategy. So, accepting
that and parking that for one moment, do you think that additional
and separate funding is likely to be needed if this strategy is to
be implemented effectively?
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|
[330] Dr Aziz:
It’s very difficult to answer, because we have different ways
of funding that haven’t achieved their targets. With the
focus on what was actually the outcome we wanted to achieve, do we
just want numbers—that’s why we were talking earlier
about numbers—or are we really looking at the quality of
care? I think that if the funding is targeted into a definite
outcome, you might achieve it, but if you just fund it full stop,
you’re not going to get much.
|
|
[331] Dawn
Bowden: So, you’re saying that the strategy should be
clearer about the required outcomes.
|
|
[332] Dr Aziz:
Yes, it’s not clear in the strategy—it’s very,
very loose. If I am talking as a college, it’s very loose. If
I am talking about myself being part of the health board, lots of
targets have actually been passed to the health board. Actually,
can the health board do it? Have they got the workforce? Have they
got the facilities?
|
|
[333] Dawn
Bowden: Sorry. What would be the most effective sort of target
or outcome that you’d be looking for, then?
|
|
[334] Dr Aziz:
There are three outcomes that you can really think about. One, at
the heart is the patient’s satisfaction. Are we meeting that
patient’s needs or not? Two, you may think about, as a
clinician, what we can do and what our targets should be as
clinicians. But, at the same time, are we meeting the quality of
care that we are providing to that patient? It’s very, very
difficult to measure quality of life. So, if we are really focusing
on the individual patient, we need to focus on their quality of
life more than anything else.
|
|
[335] Dawn
Bowden: Okay. Do you think we’ve got the capacity to do
that at the moment?
|
|
[336] Dr Aziz:
No.
|
|
[337] Dawn
Bowden: So, what did you mean in your evidence about having an
overarching clinical strategy and management of dementia plan to
complement this? What was the meaning behind that?
|
|
[338] Dr Aziz:
Putting it in a very, very simple way, we have, for example,
different health boards in Wales. Are we going to ask every single
health board to do it their own way, or are we going to have one
clinical pathway that is consistent across all of Wales, so it
doesn’t really matter where the patient is, they are going to
have the same quality—?
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[339] Dawn
Bowden: You’re looking at consistency—
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[340] Dr Aziz:
Consistency. So, for example, if I’m talking about
antipsychotics, these are the guidelines about antipsychotics that
everyone should do in principle, but, actually, you are a
clinician, you have skills, it’s an individual patient, and
you may go a different way if you have evidence, not just evidence
from the literature, but actually the patient need is different.
But at least the starting point is the same across the whole of
Wales. So, rather than—. You have to think about it. Do we
need to all sing from the same hymn sheet or, if we leave it to
everyone again, which we’ve done in the past, did it work or
not?
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[341] Dawn
Bowden: Yes, I understand that. Finally, my final point, Chair,
would be: given what you were just saying then about the outcomes,
you would see, presumably, the strategy prioritising those areas,
and the measures for those would be those particular outcomes, that
they would have been achieved, yes?
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[342] Dr Aziz:
In the Royal College of Psychiatrists, we did a paper this year, or
towards the end of last year, and a paper in 2012, about outcome
measures in old-age psychiatry, and, again, we did respond to the
dementia strategy in England, and we tried to just produce three
simple outcomes that can be applicable to everyone, because you
need it to be SMART, but also you need it to be easy. So, for
example, if I say about the well-being tool, which is a very, very
simple tool that can be used by anyone, and, again, it’s
about the well-being of the patient—. So, if I’m using
a one-to-five satisfaction questionnaire on how happy you
are—.
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[343] In Wales, a
while back—it’s a shame that it disappeared—we
had a very simple paper called, I think, ‘Your say’ or
something like that—simple, simple. This is proper feedback,
because if you put more and more and more for the patient, they are
not going to put anything. ‘Have your say’; it was
‘Have your say.’ It’s a simple way of getting
this feedback, a simple way—‘Are we meeting your needs
or not?’ If I put a whole questionnaire and the whole outcome
measures, who’s going to do it? It would take me away from
patient care. So, if we simplify things and if we know what we are
measuring, it will be perfect.
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[344]
Dai Lloyd: Diolch yn fawr iawn ichi. Dyna ddiwedd y sesiwn.
Diolch yn fawr iawn ichi am y papurau gerbron yn y lle cyntaf, y
dystiolaeth ysgrifenedig, a hefyd am ateb y cwestiynau mewn ffordd
mor aeddfed a chelfydd. Diolch yn fawr iawn ichi. A gaf i gyhoeddi
y byddwch chi’n derbyn trawsgrifiad o’r cyfarfod yma
i’w wirio fe i gadarnhau ei fod e’n ffeithiol gywir?
Ond diolch am hynny. Gwnawn ni symud ymlaen i’r sesiwn nesaf.
Mwy na thebyg y gwnawn ni eich gweld chi yn ein harolwg ar
feddyginiaeth gwrth-seicotig, felly. Hwyl am y tro.
|
Dai Lloyd: Thank you very much. That
concludes the session. Thank you very much for your written
evidence and also for answering our questions in such a skilled
manner. May I just tell you that you will receive a transcript of
this meeting so that you can check it for factual accuracy? But
thank you very much for your evidence. We’ll move immediately
to our next session. I’m sure we will see you again in our
inquiry into antipsychotic medicine. Goodbye for the time
being.
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[345] Dr Aziz:
Thank you.
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[346] Dr
Fenton-May: Thank you very much.
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11:38
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|
Ymchwiliad i
Strategaeth Genedlaethol Ddrafft Llywodraeth Cymru ar
Ddementia—Sesiwn Dystiolaeth 4—Iechyd Cyhoeddus
Cymru
Inquiry into the Welsh Government’s Draft National Dementia
Strategy—Evidence Session 4—Public Health Wales
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[347] Dai
Lloyd: Good morning. Welcome aboard.
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[348]
Gwnawn ni symud yn syth ymlaen,
felly, i eitem 5 ar agenda’r pwyllgor iechyd y bore yma a
pharhau efo’n hymchwiliad i strategaeth ddrafft genedlaethol
Llywodraeth Cymru ar ddementia. Dyma’r bedwaredd sesiwn
dystiolaeth—pedwaredd sesiwn dystiolaeth y bore, a dweud y
gwir. Yma o’n blaenau ni nawr mae Dr Les Rudd, arweinydd
gwella’r gwasanaeth iechyd meddwl Iechyd Cyhoeddus Cymru.
Diolch yn fawr am eich tystiolaeth ysgrifenedig gerbron ac wedyn,
gyda’ch caniatâd ac fel sydd yn draddodiadol erbyn hyn
rŵan, awn ni’n syth i mewn i gwestiynau llafur gan yr
Aelodau. Mae’r ddau gwestiwn cyntaf gan Caroline
Jones.
|
We’ll move immediately, therefore, to
item 5 on the health committee’s agenda this morning, and we
continue our inquiry into the Welsh Government’s draft
national dementia strategy. This is our fourth evidence
session—our fourth evidence session of the morning, if truth
be told. Joining us now is Dr Les Rudd, who is mental health
service improvement lead, Public Health Wales. Thank you very much
for your written evidence, and, with your permission, and as has
become something of a tradition for our committee, we’ll move
immediately to oral questions from Members. The first two questions
are from Caroline Jones.
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[349] Caroline
Jones: Thank you, Chair. Good morning, Dr Rudd.
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[350] Dr Rudd:
Good morning.
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[351] Caroline
Jones: I’ve amalgamated my questions. So, could I ask,
please, what you think is required in the draft strategy regarding
public health interventions that may minimise risk factors, which
may help to delay or even avoid the onset of dementia? Secondly,
how can we ensure that such interventions reach the whole sections
of Wales—the whole population—including Welsh speakers
and those people with protected characteristics?
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[352] Dr Rudd:
Okay. I need to introduce myself properly, really, by saying that I
work in Public Health Wales, for Public Health Wales, but my field
is in service improvement. I work specifically on the dementia care
improvement programme, which I lead, which has five key components:
memory assessment services, district general hospitals, community
services, including residential care and nursing homes, which goes
particularly to issues around medications, carers, and psychiatric
in-patient units. So, the expertise that I’m bringing to the
table is more around those issues.
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[353] My colleagues in
Public Health Wales lead on the work around health, healthy
lifestyles, nutrition, countering obesity, and those kinds of
issues. We have increasing evidence that the things that we would
ordinarily recommend for a healthy and long lifestyle actually are
good preventive factors in dementia as well. So, I would commend
the work that they do and emphasise that we should do that as well
in the context of dementia care and, indeed, cognitive impairment
more generally.
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[354] Caroline
Jones: Thank you.
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[355]
Dai Lloyd: Symud ymlaen. Rhun.
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Dai Lloyd: We’ll move on to
Rhun.
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[356]
Rhun ap
Iorwerth: Bore da iawn i chi. Mae’r term
‘dementia-friendly’ yn rhywbeth yr ydym ni yn ei drafod
mewn perthynas—ac mi wnawn ni yn nes ymlaen—ag ysbytai
a gofal sylfaenol ac ati. Os caf i jest yn sydyn gofyn i chi am y
syniad o ddatblygu cymunedau sydd yn ystyriol o ddementia, beth ydy
pwysigrwydd hynny a beth ydy rôl y strategaeth mewn datblygu
hynny?
|
Rhun ap Iorwerth: A very good morning
to you. The term ‘dementia-friendly’ is something that
we discuss—as we will do later—in relation to primary
care and hospital settings, but if I may just ask you about this
idea of developing communities that we would describe as dementia
friendly, what is the importance of that and what is the role of
the strategy in developing that?
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[357] Dr Rudd:
I think a large part of what we need to do with the strategy, in
raising awareness, is to combat stigma. I think the emphasis on
dementia-friendly communities is something that will help people
remain at home, in the community, for longer. You will have a
priority for countering isolation. That’s a particular issue
for a lot of the people that we will be talking about in terms of
living at home alone. In that context, I think so much of what we
need to do with this strategy needs to be focused on our ability to
help people, support, with a good quality of life and to stay at
home as long as possible. I think the more that we can do in
promoting dementia-friendly communities—and I mean that in
its broader sense, not just dementia-friendly general practice
surgeries, where we might think about the physical environment, but
the culture, the way we respond, the support that we can expect
from our families, from our families’ children, just general
issues that go really into, I think, a misunderstanding and the
stigma that’s often associated with a diagnostic label.
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[358] Rhun ap
Iorwerth: Who drives change on that? Who drives that cultural
change, and is that addressed enough in the strategy as it is, or
does there need to be a little bit of change and improvement and
strengthening there?
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[359] Dr Rudd:
I’m really focused on driving that cultural change within all
of our services—health, social care, the voluntary sector
services—and that drive must come from the top. The change
that we would hope to expect within a broader culture, I think,
goes to our education systems; it goes to our broad mainstream
media relations and the ways that we can communicate about things.
So, I think that’s a very huge and a big agenda. I’m
particularly interested in the issue of driving cultural change
within our health and social care services.
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[360]
Rhun ap Iorwerth:
And, again, does the strategy focus
enough on that?
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[361] Dr Rudd:
No. No. The issue is, for me—and I’ll probably say this
a number of times—we’re well behind the curve. In 1990,
we were talking about the ageing demographic. We are behind the
curve. We haven’t caught up. We’ve got to go really
fast now—really fast now. Does the strategy give us enough?
It says the right things. It’s given us some new money. You
could argue there’s always the need for more new money, but
will it be one of the top three priorities for the chief executives
of local authorities, going to education as well as social care and
housing, and one of the top three priorities for the chief
executives of our health boards? Unless it is—we’ve got
too many priorities. I think it’s really important if
we’re going to put something behind this. Give this a No. 1
priority for the next five years.
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[362] Rhun ap
Iorwerth: One suggestion made in the draft strategy is that
Welsh Government should consider, with Public Health Wales,
supporting a dementia mapping project across Wales. Is that
useful?
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11:45
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[363] Dr Rudd:
It would be useful. They have it in England; it helps us identify
more at a locality level. It’s more focused around the
primary care clusters than it is the local authority clusters, and
I think here we would be more interested in looking at it at local
authority and, indeed, at community levels. I think the single
biggest issue, though, is that we only have 51 per cent, as you
know, of people diagnosed. So, where are the other 49 per cent, and
how quickly can we help identify them? And, if we can’t
identify them, how can we identify their needs? A lot of them will
be in residential care and nursing homes without a diagnosis. How
do we make sure that we can get to them quickly to actually make
sure we can provide the bespoke support and care packages that are
needed? Sorry, I’ve slightly missed your question there, I
think.
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[364] Rhun ap
Iorwerth: No, you haven’t. I perfectly understand that
it’s something you support, and we’ll no doubt come on
to diagnosis rates shortly. Thank you.
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[365] Dai
Lloyd: Angela has got the next three questions.
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[366] Angela
Burns: I just wanted to talk very quickly about training,
diagnosis, care and support. You’ve covered some of it, but,
in your evidence, you particularly talk about the need to train for
distressed and challenging behaviour. Could you just expand on that
a little bit?
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[367] Dr Rudd:
Yes, I would like to. Eighty-four per cent of admissions to medical
and surgical wards are over 85—the median is 87—which
means—
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[368] Angela
Burns: Sorry, could you just say that—84 per cent of
admissions are people—
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[369] Dr Rudd:
To medical and surgical wards will be people over 85. They will
have co-morbid conditions, so they may have been admitted for a hip
or for a physical issue, but they will have co-morbid conditions. A
third are likely to have a cognitive impairment, possibly a
dementia, another proportion will have a delirium that we can help
to treat, and a higher proportion will also have depression. So,
the core business of our district general hospitals is not just
physical healthcare, it is co-morbid physical and mental health
care, and we’ve got to move away from the silos.
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[370] We have given a
lot of priority to providing dementia-awareness training for our
staff. We’ve helped to devise an e-learning module, which
I’m not sure they made mandatory, but it was very basic and
simple. I know that there’s some excellent work being done
around the knowledge and skills framework for dementia care. Part
of the reason for giving you that evidence is that we see a lot of
what we call—I hate the term—‘challenging
behaviour’; behaviours that challenge the staff in the
provision of care. These behaviours, in my opinion, are a response
to distress, are a response to not knowing the environment, to
worry. Helping our hard-pressed staff to have the time and the
skills to be able to communicate effectively, particularly in the
provision of personal care—the highest incidence of violence
and aggression patient to staff comes in the provision of personal
care, good nursing care—. We know from services back in the
1990s when we were working with learning disability services, to
use them as an example, that the provision of psychological
approaches to the ways in which we communicate, to the provision of
personal care, can help reduce these behaviours. We should be doing
more of that. Part of the evidence that I submitted was to say this
should be a priority.
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[371] So, we have a
lot of priorities given within the strategy for good education and
good awareness and, as I say, we are behind the curve. Actually
getting that into our wards is not easy. But this particular
training requires some support, and I’m not sure that we have
the staff to provide some of it. Occupational therapists, technical
instructors, psychologists—we don’t have them embedded
in our psychiatric wards, let alone on our district general
hospital wards. Who’s going to be providing some of this
training to support people on the wards? So, I kind of want to get
into that space a bit more and say it should be much more of a
priority.
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[372] We have
now—. Recently, Welsh Government have funded the expansion of
liaison psychiatry services, and good. And about time. How are we
going to support our busy general hospital staff in being able to
themselves learn the skills to be able to do their job better with
people with a challenging behaviour or a cognitive impairment? We
need access to their support. So, this is partly my thing—and
I’ll come back to it—about being behind the curve, and
we really need to give it a priority.
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[373] Angela
Burns: Given the increase in dementia, because, thankfully, we
are living longer and we should celebrate that, given the fact that
it’s now, I understand, the biggest killer of older
people—in fact, I think it’s across the whole
population—do you think, having listened to what you’ve
just said, that we need to review how we train our doctors, our
nurses, our healthcare professionals and should we embed dementia
training, actually, in the basic training, in the first sets of
training, so that when they come out of their training and their
degree courses and all the rest of it, they’ve already got
some understanding of this?
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[374] Dr Rudd:
Absolutely. Fundamentally. In fact, we’re doing it. But, when
you’re learning as a psychiatrist, it needs to be one of
those that’s mandatory, as opposed to one of those
that’s—or as a physician, one of those that’s
made a mandatory requirement, not one of those, ‘Oh,
that’s mental health over there’. I think that’s
my point, really. How do we, though, get the training that we need
to get people up to speed who are already in post? That’s our
challenge.
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[375] Angela
Burns: Could you just go on to talk to me about the increased
vulnerability of certain groups to dementia? One of the concerns
I’ve had over the evidence that we’ve received
is—I worry that there’s a slight conflation of dementia
with mental health issues, because I don’t see people with
mental health issues and learning disabilities being seen as a
protected group, at all.
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[376] Dr Rudd:
I’m exaggerating to say that co-morbid conditions are almost
the norm, certainly in terms of what see within our hospital
settings—physical and mental health problems. But within the
mental health context, we mustn’t forget that people with an
organic illness or cognitive impairment are probably likely to have
a functional illness as well, often a depression. That would go to
their skills, capabilities and, sometimes, their motivation for
self-management of conditions. So, I think providing support
generally within the district general hospital setting to identify
people, particularly, who may be depressed or anxious, where we can
provide support for their self-management of what is often a
chronic condition—it could be any condition—that goes
to a concept of a psychologically minded health and social care
service where, as a norm, we are all trained to acquit to provide
basic training and support for people in the cognitive skills. We
use the term, sometimes, ‘cognitive behavioural
therapies,’ but the skill set behind that is something that
is really there just to support people to be able to better manage
their own conditions. That’s just basic self-management, and
I think we can do a lot more.
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[377] Angela
Burns: Just one really quick question. A lot of elderly people,
for example, get admitted to hospital because they have orthopaedic
issues, and there is a growing use now of orthogeriatricians,
because they look at them in the round and not just go, ‘Oh,
it’s a broken leg or a fractured hip,’ but they look at
the whole thing. Is there an equivalent person who would look at
co-morbidity that comes with dementia? Or do we just have to
try—we know how difficult this is—to pull together a
load of strands of services?
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[378] Dr Rudd:
You will have seen Victor, who, as an old-age psychiatrist, will
bring quite a lot to—
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[379] Angela
Burns: It was powerful.
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[380] Dr Rudd:
But I think how we bridge those gaps—and there are
gaps—‘This is a physical health problem, this
person’s now got a mental health problem, over to you.’
No: ‘How do we support that over here?’
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[381] Angela
Burns: We need generalists, don’t we?
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[382] Dr Rudd:
It’s a generalist—
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[383] Angela
Burns: A specialist generalist.
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[384] Dr Rudd:
I mentioned the liaison psychiatrists, whose role is not to come in
to take over, but to support, empower and upskill the existing
physicians, and I think that’s something that we have begun
to do. We were very late in doing it, but there’s great
evidence for its effectiveness. How do we do that? Joint care
wards; physical and mental health care wards. We’ve got to
bridge those gaps; we’ve got to integrate the service
better.
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[385]
Dai Lloyd: Gan symud ymlaen, mae’r ddau gwestiwn
nesaf o dan law Lynne Neagle.
|
Dai Lloyd: We’ll move on, and the
next two questions are from Lynne Neagle.
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[386] Lynne
Neagle: Thank you. Are you satisfied that the target to improve
diagnosis rates by 3 per cent a year is ambitious enough?
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[387] Dr Rudd:
Welsh Government will have a target and not stretch the ambition of
that target beyond a point that is not achievable. It doesn’t
want people to fail. So, from the perspective of my advice to Welsh
Government, it would be: make sure you have a target that’s
deliverable. That’s probably deliverable as we are right now
in terms of something we can move towards. Is it enough? No. Fifty
per cent; it doesn’t say in that document that this is the
lowest rate across the whole of the UK. Northern Ireland, which you
will have heard about, is 61 per cent, and Scotland’s up
there. Why are we so low, and what are we doing about it as a
priority? Now, if we want to make it a priority, it goes back to
the fact it can’t be one of a hundred priorities. It has to
be a top-drawer priority. If we made it a top-drawer priority, we
can change that—change it more effectively. I think in part
of the written evidence a 75 per cent target was put there. My
question back to them would be: how are you going to do it? Are we
going to throw more money at it? Probably not likely. So, I think
more GP-led clinics is a start. More outreach to in-patient nursing
homes, community care homes—particularly by both the GPs and
the memory assessment services that can outreach. Do they have the
capacity to do so? That is a question.
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[388]
So, there are definitely resource issues,
but I think there are definitely ways we can do it. Central to the
question, for me, is: why do GPs perhaps become reluctant to use
the diagnosis? I think a large part of that goes to: have we
clearly demonstrated sufficiently for general practitioners that
the diagnosis is worth giving? Access to post-diagnostic support
services—is the evidence there for that? Now, we have to go
and sell that. We have those services; cognitive stimulation
therapy services, for example. We’re increasing the ways in
which we can do that within memory assessment services. But out
there, getting access to the support in the community, making sure
they’re resourced—I think that’s a significant
issue. Some of the therapies—speech and language therapy: we
have one speech and language therapist in the memory assessment
service, based in Cardiff and the Vale. Why don’t we have
that as a post-diagnostic support service across the whole of
Wales? To use that as an example.
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[389]
So, there’s something here that
goes to our teams, the multidisciplinary composition of our teams,
with OT, with psychology, speech and language therapy. Our equity
of provision for this is very limited at the present time.
We’ve got to drive that further, and herein lies a
tension—forgive me—we want to get better and drive a
target to increase the numbers of people that we diagnose: 810
people, new people, last year, through memory assessment services.
If we double it, we’re going to spend less time and have less
resource available to do the post-diagnostic support services. So,
there’s a tension in here that needs to be drawn out within
this strategy. What is our priority? If you want increased
diagnosis, we’re going to lose something in our
post-diagnostic support services, and we’re going to lose the
very arguments that we want to make to general
practitioners—that it’s actually worthwhile. And
families; a lot of GPs will not give a diagnosis because the family
are worried about the diagnosis and they don’t see the
purpose and the benefit. So, there are some real issues
there.
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[390]
Lynne Neagle: Okay. Can I just follow up on a couple of things
you’ve said? In our previous evidence session, we heard a
couple of reservations about diagnosis rates. Dr Aziz was concerned
that, by having more general people doing diagnoses, that there was
a risk of perhaps that being done wrongly. But you seem to be
saying something different. Dr Fenton-May said that she had the
worries that you’ve referred to—why diagnose people?
Where’s the support, really? Clearly, support is crucial if
you’re going to increase diagnosis rates. So, do you think
it’s possible? You’ve got to do the two; one without
the other is a waste of time. And have you got any concerns that,
if we had, say, GPs and nurses doing diagnoses, then we might have
problems—maybe the wrong diagnosis, et cetera?
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[391]
Dr Rudd: Yes, I’d be concerned about misdiagnosis. I
know Dr Aziz, and Dr Aziz is with the college, but I would trust
our GPs. I would trust our GPs, and we should train them to be able
to do much more, and they want to do much more. I don’t see
this—. Having access to brain scans, and some of the kit that
goes with it, these things will take time. But if I was a person
presenting, I would want to go to my GP. This is a normal, friendly
environment for me. If I can get the service that I want there from
my general practitioner, who knows me, that’s where I’d
want to be. I think: how can we better upskill and support,
particularly our general practitioners? But there are other
professionals that I think can get involved.
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12:00
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|
[392] Can I mention
something about the language issues? I’ve a little bee in my
bonnet about something. The Alzheimer’s Society have produced
a really good toolkit, a cognitive assessment toolkit. It’s
got six tools within it. I think if any GP looked at those
tools—. They probably use them already, as there’s a GP
cog inside that: a cognitive assessment tool. We’ve
translated them into Welsh. Great. And we’re using them, and
all the memory assessment services can provide bilingual services.
But if there was a service where it was really important to make
sure that the different language issues were picked up, then this
is that service, in terms of people in later stages wishing to use
their first language. The bee in my bonnet is: we’ve got
these tools, but we haven’t had the research to validate them
in their Welsh language versions. We don’t know what the
norms are. So, we can use a Welsh language translated tool, and we
use English normative data to validate the tool. There’s some
good evidence that being bilingual or multilingual is a protective
factor, so I think it’s really important. So, research
please; helpful research is a priority to validate some of the very
good existing tools we’ve got.
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[393]
Lynne Neagle: Thank you.
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[394]
Dai Lloyd: Right, we’re getting towards the end now. Jayne
has got a question that’s possibly partially been answered,
but carry on.
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[395]
Jayne Bryant: I was going to say I think it has been covered in
some of your answers. You’ve been very comprehensive in your
answers. You’ve mentioned about the resource issue, and you
said there are definitely resource issues; do you think
implementing the strategy will require additional separate funding?
And you’ve suggested some areas, such as more GP-led clinics
and outreach, where you’ve given specific examples. Do you
have any more examples that you’d like us to focus
on?
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|
[396]
Dr Rudd: I could probably give you a list, but I’m
coming from a pragmatic place. We have actually had Welsh
Government support for some additional resources in mental health
services, particularly around child and adolescent mental health
services as well, and, for this strategy, the dementia support
workers—some of the support to our in-patient services in the
provision of technical instructors and OTs to provide some of this
training. So we’ve had some, and we’re really fortunate
and lucky to have it in this resource-constrained environment. And
it would be good to have more. But I think, back to my issue, if
we’re going to move the strategy forward, we are looking at
the use of mainstream resources that are within health boards,
which are out there in district nursing and in generic social
services, and what we’re looking to do is to make sure
they’re all dementia champions. That’s our way forward.
So, there’s lots we can do to try to improve the little bits
of the service we’ve got and the ways we can, maybe, provide
better post-diagnostic support. And you could argue lots of
different ones within that, but for me, the central priority is:
make it a top priority, not one of the 100 priorities for the GP.
And within that, look to the more efficient use of
resources.
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[397]
I haven’t mentioned medications. We
did some really good work in nursing homes, where we were working
with them using a community pharmacist to work with the team to
provide much more personalised, person-centred care for the
residents of their home. And a large part of that involved the
community pharmacist working with the general practitioner on a
medications review, and we saw some significant reductions in the
use of antipsychotics and the avoidance of substitute sedatives,
which is often the case. There are cost efficiencies we can make
here if we can support the use of those drugs. It’s
particularly often around the management of behaviours that the
home finds difficult and, if we can support the home in being able
to manage those behaviours that distress more positively—and
I think we can, but it’s quite intensive work. Time is the
resource.
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[398]
Dai Lloyd: Okay. Julie.
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[399]
Julie Morgan: Thank you very much. Actually, I think, the capacity
in the NHS and social services to deliver this strategy—I
think we’ve discussed that. What about the oversight of the
delivery of the strategy? Do you think that would be most
appropriately undertaken by the older person’s delivery
assurance group?
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[400] Dr Rudd: Well,
I’m sure the group—good group, good function. We need
an assurance function. We need to make sure we’ve got robust
and reliable measures. It’s often the case with strategies
that we end up with 100 measures, and a lot of those measures
are process and activity measures: ‘How many widgets
do you have?’—forgive me. I’m interested in the
impact evaluation. Let’s find ways in which we can get carers
and people with dementia feeding back regularly on their
experience: ‘Is it getting better?’ Let’s get
that—if there was one measure, that’s the measure.
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[401] So, I think it
depends—. You know, I’m sure we’ve got measures
we can use. I’m interested in the question: what one or two
measures are going to tell us a lot about a whole range of
different measures?
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[402] Dai
Lloyd: So are we, actually. Dawn, I think that’s
your—
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[403] Dawn
Bowden: That was actually my question but, if I could, what
would you say would be the key priorities, then, in the strategy?
You said that measuring outcomes is absolutely crucial. What would
be the key priority from a measurement point of view?
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[404] Dr Rudd:
I just think, across the whole of the service—. In mental
health services generally, we’re not very good at monitoring
outcomes from the service because they’re long term. And the
way we’ve approached that is to seek better repeat test
measures of change over time from the person using the service, and
from their carers and family. So, I think something along those
lines that goes specifically to the question, ‘What is your
goal? What is your most important goal?’; ‘My most
important goal is to remain at home with a good quality of life for
as long as I have this diagnosis’. Whatever that goal is, how
are you doing with that goal over time? Let’s monitor and
measure that goal and support people in doing that. It
doesn’t have to be the dementia service that does that; the
district nurse, generic social services—I think there are
ways we can get that experience fed back to us. I’ve got to
say, whenever people do feed back, they tend to be so positive
about the service in a situation where it says a lot that their
expectations are so low. You know, there’s a part of me that
wants to drive the expectation to expect more of this.
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[405] Dawn
Bowden: Okay, that’s fine.
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[406]
Dai Lloyd: Diolch yn fawr. Dyna ddiwedd y sesiwn
dystiolaeth—tystiolaeth pwerus iawn. Diolch yn fawr iawn i
chi; perfformiad arbennig y bore yma. Gallaf bellach gadarnhau y
byddwch chi’n derbyn trawsgrifiad o’r sesiwn yma i
gadarnhau ei fod e’n ffeithiol gywir. Gyda gymaint â
hynny o eiriau, a allaf i ddiolch yn fawr iawn i chi unwaith eto am
eich presenoldeb? Diolch yn fawr iawn i chi.
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Dai Lloyd: Thank you very much. That
concludes our evidence session. We had some very powerful evidence.
Thank you very much; an excellent performance this morning. I can
confirm that you will receive a transcript of this session to check
for factual accuracy. With those few words, may I thank you once
again for your attendance this morning? Thank you.
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[407] Dr Rudd:
Thank you for inviting me.
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