Cynulliad Cenedlaethol Cymru The National Assembly for Wales Y Pwyllgor Deisebau The Petitions Committee
Dydd Mawrth, 2 Gorffennaf 2013 Tuesday, 2 July 2013
Cynnwys Contents Cyflwyniad, Ymddiheuriadau a Dirprwyon Introduction, Apologies and Substitutions P-04-432 Atal Recriwtio i’r Fyddin mewn Ysgolion P-04-432 Stop the Army Recruiting in Schools Deisebau Newydd New Petitions Y Wybodaeth Ddiweddaraf am Ddeisebau Blaenorol Updates to Previous Petitions P-04-456 Dementia—Gallai Hyn Ddigwydd i Chi: Sesiwn Dystiolaeth P-04-456 Dementia—This Could Happen to You: Evidence Session
Cofnodir y trafodion yn yr iaith y llefarwyd hwy ynddi yn y pwyllgor. Yn ogystal, cynhwysir trawsgrifiad o’r cyfieithu ar y pryd. 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.
Aelodau’r pwyllgor yn bresennol Committee members in attendance
Russell George	Ceidwadwyr Cymreig Welsh Conservatives
William Powell	Democratiaid Rhyddfrydol Cymru (Cadeirydd y Pwyllgor) Welsh Liberal Democrats (Committee Chair)
Lindsay Whittle	Plaid Cymru (yn dirprwyo ar ran Bethan Jenkins) The Party of Wales (substituting for Bethan Jenkins)
Joyce Watson	Llafur Labour
Eraill yn bresennol Others in attendance
Tony Alexander	Adfocad gyda’r Gymdeithas Alzheimer’s Advocate with Alzheimer’s Society
Helen Jones	Prif Ddeisebydd Lead Petitioner
Lisa Morgan	Hugh James
Swyddogion Cynulliad Cenedlaethol Cymru yn bresennol National Assembly for Wales officials in attendance
Stephen Boyce	Y Gwasanaeth Ymchwil Research Service
Kayleigh Driscoll	Dirprwy Glerc Deputy Clerk
Helen Roberts	Cynghorydd Cyfreithiol Legal Adviser
Naomi Stocks	Clerc Clerk
Dechreuodd y cyfarfod am 9.12 a.m. The meeting began at 9.12 a.m.
Cyflwyniad, Ymddiheuriadau a Dirprwyon Introduction, Apologies and Substitutions
[1] William Powell: Bore da a chroeso cynnes. Good morning and a warm welcome to the penultimate Petitions Committee meeting of this term. We have received apologies this morning from Bethan Jenkins, and it is great to welcome Lindsay Whittle as her substitute this morning. Normal housekeeping arrangements apply and, should anyone wish to speak in Welsh, the translation facilities are available for us.
9.13 a.m.
P-04-432 Atal Recriwtio i’r Fyddin mewn Ysgolion P-04-432 Stop the Army Recruiting in Schools
[2] William Powell: We are going to be considering the very full evidence session that we took at our most recent meeting. We all have a transcript of that as an aide-memoir for us today. So, the petition was submitted, as you will recall, back in November of 2012, calling for:
[3] ‘the National Assembly to urge the Welsh Government to recommend that the armed forces should not go into schools to recruit.’
[4] It goes on to say that:
[5] ‘Britain is the only country in the European Union that allows a military presence in its schools. Britain is the only country of the 27 European Union countries’—
[6] now 28 as of two days ago—
[7] ‘to recruit 16-year-old children to the armed forces.’
[8] It was quite a full, informative and sparky session, as I think we all agree. Russell, would you like to kick off on this one?
[9] Russell George: Yes. Thank you, Chair. I think it was a very interesting session. My concern, when I am considering a petition, is that it is not my personal view that comes into it in terms of whether I agree with the petition or not. Very often, I promote petitions, or make a recommendation for a petition, which I might not even agree with. On this, however, when this first came to committee, it stuck me that, ‘Gosh, we cannot be—’, that is, my personal opinion is that we cannot recruit children in schools, it is just wrong, but, as my thought process worked through, I thought, ‘Surely, this is not true’. When we took the evidence last week, the petitioners themselves agreed that it was not recruiting in schools; it was pre-recruiting.
9.15 a.m.
[10] William Powell: And promotional activities.
[11] Russell George: And promotional activities. We can see that in the transcript. However, this petition calls
[12] ‘on the National Assembly to urge the Welsh Government to recommend that the armed forces should not go into schools to recruit.’
[13] So, I find it difficult to support a petition that is factually incorrect. I would not stand in the way, if there are other suggestions for taking this forward, but I think that it sets a dangerous precedent for us as well, if we accept petitions that are factually incorrect—and it is not a matter of opinion; the petitioners accepted that, as well.
[14] William Powell: Yes, it was slightly curious at different points, with one of the petitioners, Ms Hawys, saying that it was not really about recruitment. As I stressed when I read out the text verbatim, that is actually central to the petition as received and supported and submitted for the committee’s deliberation. Also, of course, there was, as you will recall, the correction that Mr Rhys made. He did that on the record, and set that in context, and we should appreciate that. Also, I should mention that we are grateful to Ms Emma Sangster from Forces Watch for providing the documentation that she promised us, and which we all have access to this morning as a later paper, regarding the additional information on army visits to Welsh secondary schools. We have a whole table there that you will have had an opportunity to look at, by local authority area, which makes for interesting reading in the context of issues around the socioeconomic profile of some of the local authority areas and schools in question.
[15] Joyce, I believe that you indicated.
[16] Joyce Watson: Thank you, Chair. We had an interesting session, and a lot of what has been said I have to support. The petition is clearly headed, ‘Stop the Army Recruiting in Schools’. The evidence by the petitioners did not back that statement up in any way at all, despite the numerous questions that were asked. It was all predicated on our being the only European country allowing the army into schools, and, immediately, that was found not to be the case. As you have said, Mr Rhys had to say that from the very start. They talked about pupils having a day off to attend an army activity day, and when I asked some very pointed questions about whether that is unusual or disproportionate, and whether pupils have days off to look at opportunities in other careers in school time, I never got an answer. So, it seems to me that we have had some confusing evidence, to say the least, starting with an immediate backtrack on the first point. I am no wiser now than I was before the petition came in, which is a pity, because we took an opportunity to examine the validity of this petition, and I have to say that everything I heard does not enable me to make a judgment, as they have claimed, simply because the petitioners contradicted what they started out stating in their petition. To that end, I have to also say that I have difficulty in supporting this petition. It makes claims that cannot, in any way, at this moment in time, be substantiated.
[17] Lindsay Whittle: Clearly, I was not present at the evidence session, as a substitute member of this committee. I have my own opinions on army recruitment too, but as Russell George has said, it is not about our opinions. Personally, I am a great advocate for 16 and 17-year-olds to have a vote in this country—in fact, it is going to happen in Scotland. I would like to think that 16 and 17-year-olds, with respect, can make their own minds up about what they wish to attend in schools. If they have the option of visiting the army at their school, and they wish to do so, then let them do so. I am sure that they are not forced to attend these events, and I think that we should give more credit to 16 and 17-year-olds, to allow them to make their own choice.
[18] William Powell: Thank you, Lindsay, for your faith in young people in general. Another aspect that did not come out in our evidence session, and that we did not raise either, was the fact that many careers can benefit from the opportunity of work experience and such placements. By their very nature, the armed forces are not in a position to host such visits, other than through cadets and such like. Therefore, that is another thing that could be seen to be putting army promotional activity on a slightly different footing. Having said that, there are a number of things that we could usefully do and I suggest we consider. We have previously spoken about the possibility of engaging with the high school in Rhyl, which has done some innovative work in this area. Joyce, would you like to speak to that very briefly, as I think you have mentioned it on a previous occasion? Russell, I know that you have indicated as well.
[19] Joyce Watson: I suggested that we speak to Rhyl High School because I know that it actively engages with the army in its area, to seek all sorts of opportunities of engagement with young pupils. I also know that the headmistress turned a failing school around with outside help, and this was just one element of that help. It would be good to get a perspective on that work. We can do that through video-conferencing, hopefully—
[20] William Powell: Or through our outreach team.
[21] Joyce Watson: Our outreach team, yes. It would be rather nice, if we are doing outreach, to have pupils tell us, because that is a huge missing element here; we have not actually heard from any pupils. Taking Lindsay’s point—
[22] William Powell: That would be an enrichment for our consideration of the petition.
[23] Russell George: In one sense, I feel a bit uncomfortable taking this petition forward based on what we have said, but I agree that it is useful for us to get the pupils’ point of view, so I can support that. The only other point that I would make is that a lot of what the witnesses said to us in the session was very interesting. It is just a shame that the wording of the petition was as it was. There is so much relevance in what they said, with regard to promotion and the concerns around that. Putting aside whatever my views are, perhaps in future, the petitioners might want to think about coming back with a differently worded petition, which might, in a nutshell, put what their concern is.
[24] William Powell: One other action that I would like to take on behalf of the committee, if colleagues agree, is to write to Philip Hammond, the Secretary of State for Defence, seeking some clarity on the performance indicators, or what the Ministry of Defence is seeking to achieve. That was an issue that was addressed in the evidence session and we did not really have a substantive answer. We could get that context, because in recent years, there has been a greater emphasis from Government around what has been expressed as the value of the military ethos. As this is not a devolved issue, as such, it would be useful to draw on the UK Government line in that respect, just for information.
[25] Russell George: I have some difficulty supporting that, because when we write to him we have to explain what the petition is, which we have agreed is factually incorrect. If that is what the majority of the committee wants, I will not stand in the way, but I just feel that I do not want to take the petition any further, because it sets a dangerous precedent for us.
[26] William Powell: We have agreed to do some work around it, and I think that we have agreed on the action that Joyce was proposing.
[27] Joyce Watson: The other issue here, of course—because they are talking about the army, specifically, recruiting in schools, for various that reasons have been discussed—is that it might be worth trying to find out who else goes into schools to give careers advice. I suspect that the list will be endless. Nonetheless it is about that balance. As we are taking evidence, I am assuming that we are going to make a decision and write that decision into some formal letter or briefing.
[28] William Powell: Yes, I think so.
[29] Joyce Watson: I certainly need a balance, to know whether it is the case. I know the answer, as we all do, that others also go into schools.
[30] William Powell: Are you suggesting Careers Wales, or Governors Wales?
[31] Joyce Watson: Yes, Careers Wales.
[32] William Powell: Careers Wales could be a sensible destination for such a letter.
[33] Joyce Watson: Just a balance.
[34] William Powell: On the issue of writing to the Ministry of Defence, that was something that Russell clearly had reservations on.
[35] Joyce Watson: I share his reservations on this occasion, because it actually says, ‘Stop the Army Recruiting in Schools’.
[36] William Powell: So, I suppose that we could have a very short answer.
[37] Joyce Watson: I share his views, but I think that the answer is worth having.
[38] William Powell: Lindsay, you have a casting vote.
[39] Lindsay Whittle: I think that I would follow Joyce’s logic. Let us be clear, in the armed forces, people are no longer cannon fodder. There are many people in the armed forces at degree level now.
[40] William Powell: Absolutely.
[41] Lindsay Whittle: I am speaking as the only Welsh politician to visit our armed forces in Afghanistan and see the career advances that are happening for young people there. I am not particularly in favour of war, but I am in favour of defence of my country, like all of us, I am sure.
[42] William Powell: Yes, of course.
[43] Lindsay Whittle: I know, from personal experience, that a lot of good comes out of armed forces recruitment, as well as bad. I would like to perhaps see a more honest approach to recruiting. Perhaps we need to show people the consequences of war, as well.
[44] William Powell: I think that that was very much a theme in the evidence session, and one that we would appreciate. I think that we have a set of clear actions there. We have given that evidence session a good airing now and we need to move forward to the next agenda item.
9.28 a.m.
Deisebau Newydd New Petitions
[45] William Powell: Our only new petition on this occasion is P-04-493, Moratorium on Local Development Plans (LDPs) in potential City Regions. This petition was submitted by Councillor Neil McEvoy, and collected 170 signatures. The text of the petition reads as follows,
[46] ‘We call upon the National Assembly for Wales to urge the Welsh Government to bring about a moratorium on LDPs in those areas that have been recommended to be part of two new city regions. Save our Capital Cardiff believes it would be unwise for councils in those areas to make significant plans for future housing and infrastructure, which include irreversible damage to greenfield sites, before a decision is taken on the city region approach.’
[47] This is our first consideration of the petition. I am conscious that we are in the presence of a recent former council leader within this wider region. Lindsay, our normal practice at this stage would be to write to the relevant Minister—the Minister for Housing and Regeneration in this case—seeking his views on the petition. Are colleagues happy with that as an initial action? I see that you are happy. Thank you.
9.30 a.m.
Y Wybodaeth Ddiweddaraf am Ddeisebau Blaenorol Updates to Previous Petitions
[48] William Powell: The first petition is P-04-462, Ban the flying of Union flags from official Welsh buildings. This petition was submitted by Plaid Glyndŵr in March 2013, with the support of 200 signatures. We last considered this back in May, and we wrote to the First Minister—you may recall that this was at the instigation of Elin Jones—for clarification of the arrangements for the flying, not of the union jack, but the European Union flag, and we have a response in our public papers from the First Minister. I think that we were close to drawing this petition to a close last time, and we now have that additional piece of information. Russell is indicating.
[49] Russell George: We have had a letter back from the First Minister, indicating the intention of the Welsh Government to continue flying the union flag. I think that, on that basis, we should close the petition.
[50] William Powell: That would be a sensible way forward. We are also grateful to the First Minister for clarifying the wider arrangements in his most recent correspondence.
[51] We now move to P-04-333, Stop neglect and abandonment of horses and ponies by enforcement of microchipping laws. This petition was submitted by the Society for the Welfare of Horses and Ponies in October 2011, and it has the support of 2,114 signatures. We last considered it back in the spring, in March, and we wrote to the Minister for Natural Resources and Food, and to the Secretary of State for Environment, Food and Rural Affairs. We have both responses here in our public papers. As you can see, there is reference there to the upcoming publication of the analysis of the consultation. I think that, at this time, the only thing that we can sensibly do is to wait for it to be published, and then revisit it. Are colleagues happy with that way of dealing with it? I see that you are. Thank you.
[52] We move now to P-04-399, Slaughter Practices. We have two quite separate petitions here. First of all, we have P-04-399. This petition was submitted by Royce Clifford in June 2011, with the support of 400 signatures, calling on the National Assembly
[53] ‘to urge the Welsh Government to ban the practise of slaughtering animals without pre-stunning them.’
[54] We have correspondence that was circulated as a private paper from Mr Clifford. Have colleagues got the correspondence from Mr Clifford? I see that you have. We also have the response from Alun Davies, which makes it clear that he is tasking the chief veterinary officer with undertaking a piece of work in this area. Are there any comments or reflections on the latest submission from Mr Clifford?
[55] Joyce Watson: No, but I think that the way forward is just to seek a time frame for consideration from the Minister.
[56] William Powell: Yes, that is right, and then there is the work that Christianne Glossop is undertaking with her team. I think that that is probably the best way of approaching this, because that was referred to in the ministerial correspondence. Are colleagues happy with that approach? I see that you are.
[57] Next is P-04-43, CCTV in Slaughterhouses. This petition was submitted by Animal Aid in November 2012, with the support of 1,066 signatures. It calls on the National Assembly for Wales to introduce mandatory CCTV in slaughterhouses to assist vets with better regulation and monitoring. We wrote to the Minister on this matter also, and his response is very similar indeed, because, obviously, we are looking at the same piece of work, really, that will embrace this topic in addition to the concerns that were put by Mr Clifford and his fellow petitioners. So, we shall adopt the same approach in this petition as in the previous, unrelated petition.
[58] Next is P-04-445, Save our Welsh cats and dogs from death on the roads. This petition was submitted by Monima O’Connor in January 2013. We welcome Ms O’Connor to the public gallery today. The petition was supported by 10 signatures, and an associated petition had the support of over 500 signatories. The petition calls on
[59] ‘all Welsh Residents who own cats and dogs to support our petition to the Welsh Government to remove the ban on electronic collars linked with invisible boundary fencing’.
[60] The different types of danger are then explicitly mentioned in the text of the petition. We last considered this petition back in March, and we wrote to the Companion Animal Welfare Council. We have received some useful clarification from Professor Daniel Mills of the University of Lincoln; we have comprehensive correspondence from Professor Mills on this matter. He clarifies what he felt to be an inaccurate interpretation of the Companion Animal Welfare Council’s report on the use of electric pulse training aids, or EPTAs, in companion animals. In paragraph two of Professor Mills’s letter, he takes issue with the interpretation that the former Minister, John Griffiths, had made in his correspondence with us on 5 February. That is an important clarification from the organisation, which wishes to set the record straight from its perspective, and it clearly shares the views of Ms O’Connor in this respect.
[61] A sensible approach here would be to write to the Minister for Natural Resources and Food, who now has responsibility in this area, highlighting the correspondence from Professor Mills and asking if further consideration can be given. On previous occasions, we have had the benefit of Elin Jones’s input into this issue during her membership of the committee, in relation to her previous ministerial involvement, which was recent. Are we happy to write to Alun Davies in those terms? I see that we are agreed. Excellent. Thank you very much.
[62] The next update is on P-04-363, Town Centre Improvement Scheme for Fishguard. This petition was submitted by Councillor Bob Kilmister in February 2012 with the support of 1,042 signatures. The petition calls upon the National Assembly to support
[63] ‘the call on the Welsh Government to work with Pembrokeshire County Council to ensure that investment is made in a Town Centre Improvement Scheme for Fishguard, including pedestrian and traffic management measures’
[64] There is an aspiration in the petition that such a scheme will enhance the viability of the town, its attractiveness as a retail destination and as a safe space for pedestrians. We last considered this petition back in April, when we wrote to the Minister for Housing and Regeneration, and to Mrs Edwina Hart, the Minister for Economy, Science and Transport. At that stage, she had acquired the responsibility for the transport brief. We have the correspondence from both Ministers in our public papers. We also have a submission from Councillor Kilmister with some information from the South West Wales Integrated Transport Consortium from a meeting in December 2012. I will give colleagues a moment to turn to that correspondence; it is on pages 25, 26 and 27. There is reference there to the fact that, apparently, the scheme is one of a series of potential schemes that are on SWWITCH’s list, which appears to be at variance with the content of the letter from Mrs Hart.
[65] It would probably be sensible for us, if colleagues are agreeable, to write to SWWITCH asking for an update on how the Fishguard proposals are progressing. I do not know how frequently this body meets; it appears to be something like a two-monthly meeting, as there was a meeting on 7 September and 7 December, so presumably there will have been a couple of meetings since then. Joyce, I am conscious that you were a member of Pembrokeshire County Council and might well have been involved, at an earlier time, with aspects of this scheme.
[66] Joyce Watson: Yes, this scheme has many parts to it, and I have mentioned some of them before. It is the site of an old school, and they were hoping for a planning gain by selling the old school to a supermarket, but that fell through. There was a section 104 agreement that went with that and, obviously, that did not happen. Anyway, that was the past, and Bob Kilmister, I believe, is a Liberal Democrat county councillor—
[67] William Powell: He is indeed, yes.
[68] Joyce Watson: I thought you might have mentioned that, but never mind; I have. I am encouraged by the letters that we have had from both Ministers, because the petition calls for the Welsh Government to work with the local authority to deliver a scheme. That is what it says. You have had a positive response from the Ministers, saying that they have put an opportunity on the table to the local authority to engage, under the Welsh Government’s new regeneration framework ‘Vibrant and Viable Places’, and it hopes that Pembrokeshire council will avail itself of that opportunity. So, with that piece of evidence, rather than everything that went before—because we are where we are now—we want to move this forward. I certainly want to see it move forward. I have had many contacts, not least from the county councillors who represent Fishguard, including Councillor Pat Davies, a Labour representative—I will put that on the record—and others. So, I think that the only way forward is to write to Pembrokeshire County Council, because it calls for the two bodies to work together, and seek its opinion and response to the letter from the Welsh Government. That, I think, is the way forward.
[69] William Powell: Yes, I am very happy to do that, Joyce. I suppose in the context, I should have highlighted the party allegiance of Councillor Neil McEvoy in the first new petition, as a Plaid Cymru councillor. It has not been our practice to identify everybody’s allegiance, but for the record, I should do that now for the sake of completeness.
[70] Joyce Watson: I agree.
[71] William Powell. So, I am happy to do that, also. I would be happy to sign off the letter to SWWITCH asking for an update on the meetings on which we have the minutes here, and to write to Pembrokeshire County Council. Page 25 is slightly confusing, because Mr Kilmister’s first name is Bob, and there is a letter to Councillor Kilmister from somebody else, who is also identified as Bob, whom I think is probably an officer of Pembrokeshire County Council, but that is not absolutely clear, because that is appraising the suitability of the vibrant communities option. We will get clarity by writing directly to the leader of the council, Councillor Jamie Adams, who is, I believe, an independent, and to the chief executive, Bryn Parry-Jones. I am sure that that will be a belt-and-braces approach.
[72] Joyce Watson: I am sure that it will.
[73] William Powell: Are colleagues happy?
[74] Joyce Watson: Absolutely.
[75] William Powell: Thank you. We move now to petition P-04-380, Bring back our bus! Petition against the removal of scheduled bus services from east Lampeter, Cwmann & Pencarreg. This was submitted by Sharon McNamara in March 2012 and collected in excess of 500 signatures. I think that colleagues will remember that it was quite a lively and impassioned presentation, and some members of the petitioning team established friendships with the Assembly Members who met them. It was a lively petition presentation. Unfortunately, more recently, there has been limited engagement from the petitioners and, on two occasions, we have written to the petitioner seeking a response to ministerial and other correspondence and that has not been forthcoming. So, Russell, would you be prepared to—
[76] Russell George: I suggest that we close it if we have not had a response back from the petitioners. We cannot really take this forward, can we?
9.45 a.m.
[77] William Powell: No, indeed. I think that we need to pay some attention to keeping things moving. So, with regret, we need to do that.
[78] To move to P-04-459, A direct rail connection from Cardiff Airport to Cardiff central and west Wales. This is one of a suite of petitions submitted by Sovereign Wales. This one was submitted in March 2013 with the support of 39 signatures. We last considered this petition in May and we wrote to the petitioner, and his response is in the public papers. Previously, in correspondence to the committee, the Minister Mrs Edwina Hart has indicated that she has been considering her response to the south-east Wales integrated transport taskforce.
[79] Russell George: Chair, should we write to the Minister asking her to update us on this petition?
[80] William Powell: I think that that would be sensible, to see how this one is moving forward. That would make good sense. It is obviously an issue of considerable public interest at this time, and it is worth chasing some progress.
[81] Moving to P-04-417, Save Morfa Beach and Prevent the Closure of Public Footpaths 92 and 93, this was submitted by the Save Morfa Beach (Friends of Morfa) group in October 2012, with the support of 1,191 signatures. We last considered this petition in May. We wrote to the Planning Inspectorate, and we have received a detailed and helpful letter from it with regard to this issue, and, particularly, we have the timescale. The inquiry is scheduled for August, with an outcome in the spring of 2014. So, we have two options, really, as it seems to me: we could await the outcome of the Planning Inspectorate inquiry; or, because that is a process in its own right and we cannot necessarily add value, we could move to close the petition and hand it over. So, I would value colleagues’ opinions.
[82] Joyce Watson: I think that we should close it. It has moved on. I suppose that, in a way, you could argue that it has done its piece of work by moving it forward, possibly, to the stage that it is now at. We cannot add any value in addition to the Planning Inspectorate, and it will be an open session—
[83] William Powell: Yes, and all interested parties will have their opportunity to have their day in court.
[84] Joyce Watson: That is great. To me, that, in itself, is a good outcome.
[85] Russell George: I agree with Joyce.
[86] William Powell: That was my instinct on that. Are colleagues happy? I see that you are. Let us do that.
[87] To move to P-04-423, Brooklands Nursing Home, this petition was submitted by Darren Umanee in October 2012 and had the support of 115 signatures. Associated petitions collected in excess of 4,400 signatures. It calls on the National Assembly of Wales to urge the Welsh Government to consider the welfare of residents of Brooklands Nursing Home, particularly with regard to their human rights with respect to the proposed siting of the civic amenity facility that was being planned. We last considered this in December 2012. We wrote to Pembrokeshire County Council and we have its response in the public papers. We also have a comprehensive planning document from the Pembrokeshire Coast National Park Authority, with the suite of reasons that it was proposing to put before the membership of Pembrokeshire Coast National Park to decline the application. On the eve of the meeting, my understanding is that the application was withdrawn.
[88] Joyce Watson: First of all, I have to put on the record that I have opposed this from the word ‘go’, so people know where I am coming from, and with good reason. I think that what we have to do as a Petitions Committee, and what I have already done, is to write to Pembrokeshire County Council seeking confirmation as to whether it will resubmit a planning application, as I think that that might be the case. So, I think that that is where we have to start from, possibly copying in, or writing the same letter to, Pembrokeshire Coast National Park Authority seeking its views on how that might go. Well, it cannot tell us how it might go, because you have to determine everything on the application.
[89] William Powell: Yes, I am very happy to write in that vein to both Tegryn Jones, the chief executive of the national park authority, and Bryn Parry-Jones, the chief executive, for him to allocate it to the appropriate officer for response.
[90] Joyce Watson: We should also write to the cabinet member.
[91] William Powell: Indeed. I would also put on record my own expressed view in opposition to this proposal, having visited the site, as I believe you also have, Joyce.
[92] Joyce Watson: I have been three times.
[93] William Powell: I took part in the consultation in the same vein. So, we will write to the authorities, and particularly to Pembrokeshire County Council, which is promoting the application, and has committed considerable resource to its would-be application, to try to ascertain where they are coming from now. Are colleagues happy with that approach? You are.
[94] We move on to petition P-04-473, Wind Farm Public Inquiry Financial Support. This was submitted by John Christopher Day in April 2013 and collected 1,247 signatures. It calls,
[95] ‘upon the National Assembly for Wales to urge the Welsh Government to provide substantial additional financial support to help Powys County Council defend its position during the forthcoming Combined Public Inquiry’.
[96] I need to put on record, as I have previously, my membership of Powys County Council, particularly since we have correspondence from the chief executive with regard to this matter. I will give Russell George the opportunity to do something of a similar order.
[97] Russell George: I will put on the record again that I am also a member of Powys County Council. The petitioner will be disappointed by the letter from the Minister, Carl Sargeant, because he suggests that this is a matter for the UK Government. I think his disappointment will be that he will be aware that Welsh Government planning policy is what developers have responded to in the first place in submitting the applications. A wider issue here is that there was a Welsh Government statement just a few months ago that stated that Powys County Council should not object to applications if it could not afford a public inquiry. I think that that is an affront to democracy, because it is effectively saying that it should approve inappropriate applications. The issue here is that the Welsh Minister is pointing to the UK Government, so the only option left for us is to write to the UK Government with a copy of the petition and also the letter from the Minister, Carl Sargeant, and ask for its views on the petition and the letter from the Minister.
[98] William Powell: So, you are advocating that we should write to the Minister for environment and climate change on this matter.
[99] Russell George: We should write to whoever the relevant Minister is in the UK Government.
[100] William Powell: Yes, we need to be clear on that matter. Joyce has indicated; I would like to come back in in a moment.
[101] Joyce Watson: I have indicated. As the Minister’s letter stated, they have given £390,000 to Powys council to help it decide on the way forward, and to deal with this application. They also point out, quite rightly, that anything over 50 MW is the responsibility of the Westminster Government, whether some around this table like that or not. Also, the First Minister has previously made statements that TAN 8 was never meant to be used in this way, and that there was a presumption on an upward limit, which has been vastly exceeded in this case by the policy that we have no control over, and which consequently led to this inquiry. I just thought that I would level the debate out a bit.
[102] Having said all of that, the obvious place to go now, considering that we have given £390,000 to the authority, which is a substantial amount of money, is to get a view from the Westminster Government as to how it feels about supporting a local authority in this way. That would be useful, I think, to take this forward.
[103] William Powell: I am very happy to write, on behalf of the committee, to the relevant UK Cabinet Minister in this regard. Also, I just call to mind that, about four or five weeks ago, in a committee that three of us currently serve on—the Environment and Sustainability Committee—I raised issues around this with Rosemary Thomas, and it might be useful if we could identify the transcript of what she said in response to my question about financial aid for applications of this kind. Maybe we could bring that forward. It was the meeting on 13 June, I see from a memo that I have. Maybe we could bring that forward, hopefully at the same time that a response is forthcoming from the UK Minister; that may be useful in the round to consider both her comments and the Minister’s response.
[104] Russell George: I would like to clarify one point. There is a bit of information that Joyce stated that is not correct. The Welsh Government has not given £390,000 to help with a public inquiry, as Joyce stated.
[105] William Powell: It is a long-term investment, is it not?
[106] Russell George: The Welsh Government has given the money in order to help with the applications. The petitioner was referring to the public inquiry.
[107] William Powell: Yes, and the financial burden of that.
[108] Joyce Watson: Chair, I think that the transcript will show that I did not mention a public inquiry; I mentioned £390,000 that has been given to Powys County Council to help it to move this application forward, not a public inquiry. That was never mentioned.
[109] William Powell: To be fair, I did not hear you specifically mention a public inquiry. The wording is here. Just for clarity, it reads,
[110] ‘in order to help them determine applications involving innovative technologies with which officers may be less familiar. Powys County Council in particular has received £390,000 from the Welsh Government since 2008.’
[111] The implication is that it is within that category of upskilling officers to determine applications involving these innovative technologies.
[112] Joyce Watson: Anyway, we have made our decision.
[113] Russell George: I heard Joyce say that myself, but the transcript will show that, I am sure, but Joyce has clarified the position.
[114] William Powell: That is helpful and healthy. We have two actions that—
[115] Joyce Watson: May I suggest that you get your hearing checked out?
[116] William Powell: We have petitions relevant to that coming up very soon also. Thank you, colleagues, for that. We will now move to health issues within our agenda.
[117] We will move on to consider P-04-440, Say NO to Asset Stripping Bronllys Hospital. This petition was submitted by Mr Michael Eccles in December 2012 and collected 2,200 signatures. The petition reads,
[118] ‘We call upon the National Assembly for Wales to urge the Welsh Government to reject any attempt by the Powys Teaching Health Board to asset-strip the Bronllys Community hospital’.
[119] The petition goes on to make a series of specific points with regard to their aspirations for this site. I should declare that I am known to the petitioner and supportive of the aims of this petition, and it would be improper of me not to declare that. The committee last considered this petition in March 2013 and wrote to the Brecknock and Radnor Community Health Council. Its response is in the public papers. We also have a very thorough critique and response to some of the points made by the CHC by Mr Michael Eccles, which has been distributed as a private paper, to which we all have access. I would very much appreciate any thoughts that colleagues may have on this petition. Joyce?
[120] Joyce Watson: I think that the way to move this forward would be to write to Powys Teaching Local Health Board to ask for an update on the developments that relate to the site.
10.00 a.m.
[121] William Powell: Yes, we certainly need to write to Andrew Cottom, the chief executive of Powys Teaching Local Health Board, to seek clarity on that matter. There has also been quite significant exposure recently and press coverage of other aspects of activity on the site, particularly the excellent work of the pain management clinic in a recent Week In Week Out programme, which is to be celebrated. Potentially, from the themes that come up in Mr Eccles’s response to the CHC, it may be that he and his colleagues would have issues that they might wish to take up with the appropriate authority. It is clear that they have some significant levels of dissatisfaction with the way in which the CHC has handled this matter. I would be surprised if Mr Eccles was not apprised of the potential mechanism so that, if he feels that there are shortcomings, he could bring them to the attention of the relevant authority. It is not the proper work of this committee to do that. Given the tone and tenor of some of the comments made, I think that might be appropriate. Are colleagues happy with that approach?
[122] Joyce Watson: Yes. Do you mean that we should write to the Powys LHB?
[123] William Powell: As you suggested, indeed.
[124] We now move to P-04-471, Mandatory Welsh legislation to ensure Defibrillators in all public places. This petition was submitted by Phil Hill in April 2013, with the support of 78 signatures, calling on
[125] ‘the Welsh Government to provide funding to ensure that, as with basic fire fighting equipment (eg. Extinguishers), Automated External Defibrillators are available in all Welsh Public places’—
[126] which is a very broad designation—
[127] ‘to ensure the rapid treatment of any Victim of Cardiac arrest.’
[128] Lindsay, in the light of a comment that you made earlier in relation to losing a colleague recently to a heart attack, I think that I should call on you to make the first response.
[129] Lindsay Whittle: Thank you, Chair. I lost a very dear friend, only some three or four weeks ago, to a sudden and massive heart attack. It was a huge shock to all of us who loved this lady very much, especially her family. While I am fully in favour of defibrillators being as widely available as possible, what also has to go with this, of course, is adequate training for people who are using these. I know that there are people who are first responders—I think that is the organisation—and I think that the Assembly should be encouraging that. While I think that it is excellent that many shops and other establishments throughout our high streets may even own a defibrillator—
[130] William Powell: Some town and community councils and other groups have them too.
[131] Lindsay Whittle: Yes, I have been a member of a community council and we have purchased these pieces of equipment for the first responders. There is this important issue that if you suddenly have the misfortune to collapse in public and perhaps need this defibrillator, there are all sorts of issues with comeback, such as whether the equipment was used correctly and could that person have been brought back or not. Litigation is rife. We are getting into a litigation culture now. It is getting a bit like America and it frightens me to death. We even have people stopping us on the street, asking us whether we want to claim from somebody—these ambulance chasers. They frighten me enormously. I will not have anything to do with them, personally. I do think that we should encourage more defibrillators, but through proper organisations, like the first responders, like St John Ambulance, like qualified first aid trainers. I do not know how you would take it forward.
[132] William Powell: We first considered this, as you will have read, in May of this year. We wrote to then Minister for Education and Skills. We had a very comprehensive response. I am sorry; I was reading the wrong passage.
[133] We wrote to the Minister—not the Minister for Education and Skills, but the relevant Minister. We also wrote to the WLGA, and we had a full response from Steve Thomas. We also have a significant number of responses from fire and rescue and police authorities, some of which are undertaking work that has not been completed as yet, and we have a few additional responses that we need to chase in order to deal with this in a comprehensive way. I propose to write to the Welsh Ambulance Services NHS Trust and to the British Heart Foundation to seek their views to supplement the feedback that we have already had.
[134] Joyce Watson: I fully support this and I hosted a demonstration on showing how very easy it is to use defibrillators and that they have come in to the modern age. Anyone with some relatively short period of training can use them. However, I share your views; they are valid. I would like to see this pushed forward in places such as leisure facilities, where large numbers of people go and where they could over-exert themselves and find themselves in trouble. Local authorities have a huge ability to do that. Those are obvious places for me. I know that we are running over, so I do not want to extend the debate today, but I want to say that I was a member of Dyfed-Powys Police Authority, so I can tell the new commissioner that, many years ago, we signed up as a police authority in Dyfed-Powys to doing something about the police carrying defibrillators. That was a considerable time ago.
[135] William Powell: The new chief constable, Simon Prince, has undertaken to do a further piece of work on this matter.
[136] Joyce Watson: I could have told him that it has been done, but never mind. The point is this: we need to take this forward. This is an issue that can be resolved. I feel passionately about getting some resolution on this.
[137] William Powell: I will ensure that we chase up of the remaining responses, so that we can take this to the next level. Thank you, colleagues, for your contributions.
[138] Finally, we move on to the last two petition updates before we move to the evidence session. I thank the witnesses who have just joined us for their indulgence. The next petition is P-04-481, Close the Gap for deaf pupils in Wales. This petition was submitted by the National Deaf Children’s Society in May 2013.
[139] ‘We call upon the National Assembly for Wales to urge the Welsh Government to develop a national strategy to Close the Gap in educational attainment between deaf pupils and their peers.’
[140] We first considered this petition back in May, and we wrote to Leighton Andrews, who was the then Minister. We received a very detailed response from him, which is helpful in the consideration of this petition. However, we probably need to broaden this matter out and write to a series of different authorities in this regard. The Welsh Local Government Association is surely one, as is Action on Hearing Loss, because it is meat and drink for that campaign group, and Governors Wales. Are colleagues aware of any other potential bodies we should consider writing to?
[141] Joyce Watson: Why do we not write to the cross-party group on deaf issues, which is chaired by Ann Jones? That will allow us to access other groups that attend that meeting on a fairly regular basis.
[142] William Powell: If we contact our colleague Ann Jones, as chair, that would supplement the list to which I have already referred. We are also considering undertaking a piece of work on this, but the next stage has to be to get the feedback from the stakeholders. Are colleagues happy with that approach? I see that you are.
[143] The final update is on P-04-397, Living Wage. This petition was submitted by Save the Children in June 2012 and has the support of 196 signatures. We had a very lively presentation a year ago now, which seems incredible.
[144] ‘We call on the Welsh Government to stand by their promise to work towards a living wage for every worker in Wales and tell us when and how they will make it happen.’
[145] Unfortunately, we have had a limited amount, to put it kindly, of feedback from the Welsh Government on this issue. We last considered the petition in June 2012. We wrote to the then Minister for Local Government and Communities, but despite several chase ups, we have not had a response. Obviously, in the light of the recent reshuffle and the bringing together of the local government and the fighting poverty agenda, also with a refreshed team, potentially we will get a response. Let us write to the new team to see whether we can get a response on this matter. Are colleagues happy with that approach: writing to Jeff Cuthbert and Vaughan Gething? I see that you are happy. Excellent. We will now move on to the next item on the agenda.
10.10 a.m.
P-04-456 Dementia—Gallai Hyn Ddigwydd i Chi: Sesiwn Dystiolaeth P-04-456 Dementia—This Could Happen to You: Evidence Session
[146] William Powell: I welcome the lead petitioner, Helen Jones, Tony Alexander and Lisa Morgan. First, could you please just introduce yourselves for the record and to test the levels? Then, perhaps you would like to make an initial introductory statement.
[147] Ms Jones: Okay. Thank you. I have butterflies, everyone. I am a little overwhelmed by this.
[148] William Powell: There is no need.
[149] Ms Jones: Thank you for listening to me this morning, but, more importantly, I hope that you hear what we have come along to say. It is my petition; I am the person who put it on the Assembly website. If it is okay—and I am not quite sure about procedure—I would like to give each of you a leaflet. Is that all right? Is that allowed?
[150] William Powell: It is not a problem.
[151] Ms Jones: As I am not a professional person—I just have a passion for the cause—I asked Lisa Morgan, who heads up the continuing healthcare nursing team at Hugh James solicitors, to come along with me because she is very professional and conversant with the matter that we are here to discuss with you. Also, Mr Tony Alexander is a retired solicitor and, as some of you are probably aware, he is in an award-winning advocate for the Alzheimer’s Society. So, without further ado, I will jump ship and pass over to Lisa Morgan.
[152] Ms Morgan: Good morning. Thank you for inviting us here today. I will just give you some background, just to give you an idea of why I am an expert in this area. I am a partner at Hugh James solicitors and we have been acting for families in challenging continuing healthcare assessments for the last eight years. I have been representing—and we have represented—hundreds and possibly thousands of families in Wales in challenging decisions to wrongly fund the healthcare of individuals. A number of the individuals we act for—the majority of people in care homes—do suffer with dementia. The reason why Helen has brought forward the petition is because there is a huge concern that the national criteria, which were implemented in August 2010 in Wales, is quite restrictive in terms of those who suffer with dementia. I do not know whether the committee is aware that the Wales Audit Office published a report a few weeks ago.
[153] William Powell: Indeed.
[154] Ms Morgan: That report pinpoints the issues that have been raised by the petition; in particular, the recommendation that the Welsh Government reviews the differences within the decision support tool domains in Wales, as they are inconsistent with those that have been adopted in England. One thing that I want to raise with the committee is the fact that this clearly is an issue that concerns a number of people; you only need to look at the huge amount of signatures that have been obtained. Also, the number of people who have been able to obtain NHS continuing healthcare in Wales has dropped by 4% since the implementation of the guidance in August 2010. That is outlined in the report by the Wales Audit Office.
[155] In England, there was the opposite effect, in that there was a significant increase in the amount of people who were eligible for NHS continuing healthcare. I can see, from working on the ground, that there has been significant change and while the scorings do not automatically determine eligibility for NHS continuing healthcare, they do have a significant weighting, I suppose, on how someone is assessed.
[156] William Powell: I am very grateful to you for making a complex subject so much more understandable. Mr Alexander, thank you very much also for your submission to the committee on behalf of the Alzheimer’s Society. We are grateful for that. Would you like to add something at this stage from your perspective, before we move into the question phase?
10.15 a.m.
[157] Mr Alexander: The way that I came into this was because my father-in-law suffered with Alzheimer’s. We did not realise it when he came to live with us, and he gradually deteriorated and went into a care home. When it was suggested that he might be eligible for continuing healthcare, even though I was a practising solicitor at the time, I had no knowledge of this field whatsoever. The meeting was to be at 11 a.m., so we went along—we arrived about a quarter of an hour early—and we were told, ‘Oh, it’s all right. Everything has been done; he’s not eligible’. At that time, I do not think that my father-in-law recognised either me or my wife. He did not know where on earth he was, so he was mentally incompetent as far as being able to understand the procedure that was involved. With the procedure, I think that the system itself is exceedingly complicated, and it takes a good hour, I think, of me explaining to the people who are referred through to me by the Alzheimer’s Society before they can understand it. From the document that I have sent on to you, I hope that the results indicate that as the disease progresses, the score for the cognition domain shoots up. In the later stages, in England, it is almost automatically the case, as you can see from those results, that people with dementia have a ‘severe’ rating for that particular domain. In Wales, the maximum that you can receive is ‘high’, and that therefore means that it is more difficult, if all other things are equal, for patients in Wales to obtain continuing healthcare. I will leave it like that for the time being and you can come back and ask questions of me.
[158] William Powell: Thank you very much. Helen, I would like to thank you very much for preparing the additional submission.
[159] Ms Jones: I have loads more here. I have newspaper articles about it and loads of stuff—I have even got 80 more signatures.
[160] William Powell: Absolutely, and you are recognised in Wales and well beyond for the energy that you bring to this issue, and for the poignant reasons for your own commitment to this matter.
[161] Ms Jones: Thank you, Mr Powell.
[162] William Powell: Could you summarise for the committee, and for those who are watching proceedings, Helen, what, in your view, are the essential benefits to people who are suffering with dementia of receiving continuing NHS healthcare?
[163] Ms Jones: It is very simple, okay? On the cognition domain, on the decision support tool that is used by NHS professionals to determine someone’s eligibility for NHS continuing healthcare funding, the health department at the Welsh Government decided to remove ‘severe’ and ‘priority’. In one fell swoop, it meant that the majority of dementia sufferers were unlikely to obtain funding. That should not have happened. It happened after public consultation. It was there before.
[164] William Powell: That was the 2010 decision—
[165] Ms Jones: Yes, it was there before.
[166] Ms Morgan: Yes, it was in the draft document, which is published—actually, it took two and a half years for this document to be implemented. The initial draft mirrored that of the English national framework. It was then significantly altered when it was published, without any further public consultation.
[167] Ms Jones: Yeah, and surely that cannot be right. The other thing that should happen—but this, of course, is just my point of view as a layperson—is that sanctions should be imposed on those health boards that do not conform to the national framework because of budget constraints. A lot of them are not conforming. It is coming from above, right down to district nurse level—‘Careful on the tick boxes, because that will mean that it will have to come out of our budget, and your job might depend on it’. There are whistleblowers everywhere on this. You can see them on Twitter.
[168] William Powell: So, your contention is that this is effectively rationing dementia care.
[169] Ms Jones: Absolutely, and everybody knows it goes on, but there is a cloud of secrecy surrounding it. It is budgets. You know, Abertawe Bro Morgannwg University Local Health Board is supposed to save £1 million a week. I rest my case.
[170] William Powell: Russell, you had indicated.
[171] Russell George: I did indicate, but I think that the petitioners have answered my question to a large extent. So, I would just like to say ‘thank you’. I read your information as well, so thank you for that.
[172] Ms Jones: That was just a little personal thing.
[173] Russell George: That is what this committee is about, because we want to hear about people’s personal experiences, so thank you for coming today as well.
[174] Ms Jones: The human side of things is what is actually happening out there. Thank you.
[175] Mr Alexander: As far as the Wales Audit Office report is concerned, if the audit office had spoken to more people at the receiving end—the end users, that is, the families—there would have been a different slant to the report, I suspect. The audit office would have then seen the way in which, in my opinion, there is a lot of callous indifference in the way in which the assessment is approached. It is not explained to people, and they are treated with contempt and their views are not looked at, and, of course, because it is something that comes upon them very suddenly, they have not had the opportunity of looking through all this very complex documentation to understand what happens in an assessment process.
[176] Furthermore, as is pointed out in the audit report, it is often the case that the assessors do not have all the relevant reports from the GP, the psychiatrist and the nursing profession to understand exactly what the person is suffering from, and how complex those needs will become as the disease progresses, and, because of the dementia and the cognition domain going up only to ‘high’, that further hampers the ability of a person to obtain continuing healthcare.
[177] William Powell: Is it your contention that a far too high a degree of complexity has been brought into the system after the 2010 implementation?
[178] Mr Alexander: No, I think that the system itself is complex enough to start off with. As Mr Whittle mentioned in relation to defibrillators, training is necessary. I understand from what was being said that training in the use of defibrillators is not all that difficult, but, with regard to this system, it is enormously complex. It took me some time. I would like to think that, because of my background as a solicitor, I was in a better position to start to understand things than a lay person, but it took me a certain amount of time to get the hang of it. Given the experience that I now have, when I speak to one of my clients and explain to them how it operates, they say, ‘You’re the first person who has sat down and explained it to me, because we find it so daunting’.
[179] William Powell: It must be very costly in terms of clinician time as well to work through the whole thing. You have to put a cost-benefit on that time as well.
[180] Ms Morgan: Something that I get very frustrated about is the fact that, if the right decision was made in the first place, a lot of money would be saved. When a decision is challenged, the estate, if the person has sadly passed away, or if the person is still alive, is entitled to all the care fees that they have been wrongly paid, together with interest. You can imagine the interest bill that is currently being paid by the health boards and also the Assembly, due to the other scheme, the Powys scheme, on older cases. It is huge. If the right decision were made in the first place, the local health boards would be able to negotiate a cheaper rate with the care homes, and also no interest would be accrued.
[181] William Powell: Lindsay Whittle and Joyce have indicated. I believe that you want to pursue a line of questioning around the WAO report, Lindsay.
[182] Lindsay Whittle: Yes. First of all, thank you for your leaflet. It is extremely powerful, and I am sure that there is a lady called Cynthia Molkner—I hope that I have pronounced her name correctly—who is probably very proud of you indeed.
[183] Ms Jones: Thank you.
[184] Lindsay Whittle: It is extremely emotional, more so for you, I understand, but I have tingly bits going up and down my spine just reading it. So, thank you for that—it is very important. My question is about the evidence that people in Wales with severe dementia are less likely to receive this continuing healthcare, more so in Wales than in England. Mr Alexander, you are also asserting this—you are a solicitor, so I bow to your superior knowledge. However, you are correct; I have looked at the charts that we have been provided with and it is extremely complicated for me as well. Like everybody else, I would not have the faintest idea. I note that the Wales Audit Office says that health boards are unable to provide accurate data on a number of dementia cases due to the way that data have been recorded and collected historically. You mention in your oral evidence that care assessments are going at the higher level and I think that, Lisa, you said that, perhaps if we came in for care assessments—forgive me; I am not sure if I am using the right terms—on the medium and lower levels, we could not only save money, which is a part of it, but we could be aiding people like you, Helen, who have been caring for people with no respite, 24/7, 52 weeks a year, for I do not know how long. That is an extremely tough life for you as well—
[185] Mr Alexander: It is very stressful.
[186] Lindsay Whittle: Yes, it must be enormously stressful. I wonder what we can do, as a committee, to try to make recommendations to health boards to step in earlier, to give people this much-needed assistance. Is there anything that you can suggest that we do? Do you have any idea of the number of people in Wales with dementia who are being wrongly denied this healthcare?
[187] Ms Morgan: One of the issues that the audit office has also raised is the fact that there is no quality assurance of the assessment process. So, as you said, with the high level of needs, the low and moderates are not being considered. Actually, those decisions are looked at only if a family challenges them. If a multi-disciplinary team assessment recommends eligibility, clearly the local health boards consider those assessments, but those assessments that deny eligibility are not considered, and they are not quality assessed unless the family challenges that assessment. That is an issue that has been raised by the Wales Audit Office as well.
[188] On statistics, I am unable to provide statistics of how many people have been wrongly denied, however, I am aware that, of the families who challenge decisions, around 70% are successful, which is significant.
[189] Lindsay Whittle: Is it about the sharing of information as well, between all of the relevant professionals? Is that being done, or are there loopholes there that we need to—
[190] Ms Morgan: Yes, there are clear loopholes. There is a lack of training, which Tony has referred to—
[191] Ms Jones: There is pressure.
[192] Ms Morgan: There is a lot of pressure as well—
[193] Ms Jones: There is pressure to use it as a get-out-of-jail-quick card. The decisions are brought to ‘not out of our budget’.
[194] Lindsay Whittle: You might be aware that the Health and Social Services Committee is considering the Social Services and Well-being (Wales) Bill, which is an enormous Bill. Part of our recommendations, from another committee of the Assembly, is that carers be trained to recognise dementia in its early stages. That is, carers in homes where people are regarded as being reasonably okay; those carers need to recognise the initial onset of dementia. We all watch television adverts, do we not? There is the advert in which a lady talks about her father and you see him working in the garden and then, by the magic of television, he disappears and she says, ‘I think I’m losing my father’.
[195] Ms Jones: Yes, I have seen that.
[196] Lindsay Whittle: It is a powerful advert and I think that we need to get that message across as well. Not everybody has children who can visit them every day, and, for people in homes, the carer is often the person who could recognise the early stages of dementia. If we get in early, perhaps we could not only save money, but give a better quality of life to the person who is suffering from dementia as well.
[197] Ms Jones: It is also about giving more support to people who decide to care in the community, because they save Governments fortunes. That is very much about providing support to the carer. I had none; it was 24/7, unless I was prepared to pay £700 a week for my mum to go into respite care, and I was told by an NHS professional, ‘Well, that is what your mother’s money is there for’.
[198] Lindsay Whittle: No, it is not.
[199] Ms Jones: I was not prepared to steal from my own mother.
[200] Lindsay Whittle: Helen Jones, without people like you, Wales would close down tomorrow. That is a fact. Without carers—
[201] Ms Jones: Well, let us have some support for the other Helen Joneses—the silent majority of people who are caring and saving the NHS in Wales a fortune because they do not want their parents to go into nursing homes.
10.30 a.m.
[202] William Powell: Thank you, Helen. Joyce has been very patient. I know that you have some questions to come forward with, Joyce. Then, there will be an opportunity for a final statement from the witnesses before we conclude the session.
[203] Joyce Watson: Good morning. I do thank you. It must be very difficult for you to continually tell your story.
[204] Ms Jones: No, it is not. I am passionate about it.
[205] Joyce Watson: I hope that we have put the initial nerves that you had at rest. It looks like we have.
[206] Ms Jones: Yes. Thank you.
[207] Joyce Watson: It is really good that you are all here this morning. However, for us to move this forward, we have to look at some key issues, as the solicitors at the table will understand. It is not that we are not compassionate, but we have to drill down. As far as I can work out there is a need to provide assurance, as you say, about the consistent application of the framework, because everything else will fall from that. Everything that you are talking about will fall from that. Do you have a suggestion as to how that might be done, which you can state briefly? I am sure that you could go on all day. Also, that being the case, because that is the top end, you also make the allegation that health boards are making decisions on eligibility for NHS continuing healthcare based on a rationing policy. If the framework was clear, everything else thereafter would be clear. So, if you have a suggestion on how that might be taken forward, we would welcome it. Also, perhaps you could suggest anyone else that we, as a committee, might speak to.
[208] Ms Morgan: You are right that there is a clear inconsistency. I am very pleased to see figures in black and white from the Wales Audit Office, because, while I have been working in this area for a long time, and have had my suspicions, it is actually here in black and white now. You can see that Abertawe Bro Morgannwg University Local Health Board has had a drop of over 20% since 2010 in the amount of people eligible for NHS continuing healthcare in their area. You would expect that figure to only increase, because the amount of people entering care homes has increased, and the amount of people suffering from dementia has increased. Training, I think, is a key issue. In terms of what Helen was saying with regard to accountability, I think that there is clear inconsistency in applying the guidance, because there is a lack of training and a lack of understanding. While it is a tick-box exercise, it should not be applied as just a tick-box exercise. It is should be that clinician is looking at the totality of the individuals’ needs. The tool is very subjective, but it is very difficult to move away by providing specific examples of who should be eligible for continuing healthcare, because the disease does affect people in very different ways. So, you must have clinical judgment. However, the tool is being used as a tick-box exercise. It should not be used as a tick-box exercise, but I am consistently seeing decisions where I am simply seeing tick, tick, tick, and, at the end, ‘Mrs Jones is not eligible for NHS continuing healthcare’. There is no consideration of the totality of the individuals’ needs and the interaction of the health needs. That must come down to training from the outset and clear training and guidance provided to the professionals that are completing these tools. It is also a matter of taking the families’ views into account. I consistently see assessments being undertaken without families being involved. As you can appreciate, the majority of people who I act for have severe cognitive impairment. Their families speak on their behalf, and they know their mum and dad far more than a nurse assessor who has seen that individual for possibly 10 or 15 minutes on that day. So, I think that the families’ views are imperative when looking at whether an individual is eligible for continuing healthcare.
[209] Joyce Watson: Do you think then that, if you sort that, you will sort the next bit, which is—quite clearly—the allegation of rationing?
[210] Ms Morgan: Given that it is subjective, there will always be decisions that are argued to be borderline, and one person may have a different view from another. However, it would be significantly improved if consistent training were provided throughout Wales, because there is clearly a postcode lottery, which the national framework was brought in to remove. It has not removed it, and the figures show that.
[211] Mr Alexander: The reason that it is a postcode lottery, in my opinion, is the lack of training. If we turn the clock back, the start of this process is back in 1999 with the decision in the case of Coughlan. Pamela Coughlan suffered a serious road traffic accident in 1974, I think, and she was receiving continuing healthcare and was moved from one home to another in north Devon. When that happened, she and the other residents were given a written undertaking by the health board that a new home that they were going to, Mardon House, was going to be their home for life. North Devon then reassessed the situation and said ‘Oh, we’re going to move you now, and, by the way, you are no longer eligible for continuing healthcare’. She took the case to the High Court, which was in no doubt whatsoever that this was a breach of the undertaking that this was going to be a home for life and that it was a breach of her human rights under the Human Rights Act 1998 and also that north Devon had unlawfully applied criteria to avoid her having continuing healthcare.
[212] When the first edition of the English framework was produced in 2007, it contained only 11 domains. One of the criticisms of that document was that, if you applied the decision support to Pamela Coughlan, she would not be eligible for continuing healthcare funding. Taking into account that the Court of Appeal held that there was no doubt whatsoever that her needs were way beyond what social services could provide, several learned opinions were that if she had been assessed, she would have had moderate or low scores on three or four of those domains. Therefore, there was no way whatsoever, applying those criteria, that she would have been eligible for continuing healthcare. So, they then put in the new framework, which contained 12 domains, and, presumably, if she had been assessed again, that would have meant that she would have fallen into the twelfth domain, because she was suffering from autonomic dysreflexia, which is a fairly horrible condition to have.
[213] However, what has happened since then is that people have not wanted to know about the Pamela Coughlan decision, and the consequence of that is that the benchmark for obtaining funding has been pushed higher and higher, to the extent that some people are now saying, as far as the Pamela Coughlan case is concerned, that if the criteria were applied to her now, she would not obtain funding. This is absolute rubbish, because the decision of the Court of Appeal has not been overruled, and there has been no legislation in Parliament to overrule it. So, if the training were properly applied across the board in all areas, they would realise that if anybody was in a similar sort of situation to Pamela Coughlan, there is no doubt whatsoever that that person should have funding. What is happening is that the cases that I put in that document should be clearly over the top and there should be no doubt whatsoever that they should have funding. We should be looking at the cases that have moderate scores and low scores, because the framework says that, even though there are moderate or low scores, they may still mean eligibility. However, the way that it is applied in practice, they do not get it.
[214] William Powell: Thank you for that full answer. Lisa, do you represent patients from all over Wales?
[215] Ms Morgan: Yes.
[216] William Powell: Is there a particular focus in the border areas? Three of the four Members on this committee happen to represent areas that run down the English/Welsh border; are there any particular lessons or experiences there, where you have different levels of care in communities that are often split by a random line on the map?
[217] Ms Morgan: I am also from mid Wales—I am from Montgomeryshire, so I am familiar with that area. It is not the level of care that we are considering here; it is the funding of that care, and how it is assessed. Unfortunately, you will have decisions where you know that, if Mrs Jones was living 10 miles across the border, it is likely she would be getting continuing healthcare. I feel that NHS continuing healthcare in Wales should be centralised. There is clear concern across Wales. A nurse would do the assessment, and they have the appropriate experience in assessing individuals, but now that you have the Powys system, which is looking at the old, retrospective cases, a number of people who were doing the assessments at ground level have actually moved into that scheme. We have to do something now because the problem is not going away; it is just getting worse. In 2010, all the old cases were taken from the local health board and put into the Powys system, and that one area now has over 400 backlog cases to consider, and they are all appeals. It is a ticking time bomb if something is not done. I hope that the Wales Audit Office report will be significantly considered by the Welsh Government, because the problems will only get worse.
[218] William Powell: With the indulgence of my colleagues, I will ask Helen, as the lead petitioner, to make a brief, final statement in relation to this. Just to clarify, we will be considering the evidence that you have provided us with not today, but on the next occasion that we meet, which will be the final meeting of this term. Is there a final message that you would like to leave us with before we deliberate on this on the next occasion when we meet?
[219] Ms Jones: I would just like to say thank you very much indeed for your time, and for listening. I can tell that you have heard as well, not just listened, by the questions that you have asked. Thank you very much for that.
[220] Just one brief thing: during the two-and-a-half-year period that I was looking after my mother we had two multidisciplinary team assessments, as they are called. What happens is that they go into a nursing home, and in my case, my home was the nursing home, and I was the matron. It was made up of four people: a district nurse; a psychiatric nurse, when it is dementia, because it is deemed a mental illness; a social worker; and me—with me being the lady from the nursing home, shall we say. The assessments were six months apart. The decision support tool, this tick box system that they use, is made up of 13 domains, such as diet, medicines, mobility and cognition, which is what we are here to discuss. There are 13 of them. The tick boxes are ‘low’, ‘moderate’, ‘high’, ‘severe’ and ‘priority’. You need one ‘priority’ to get funding, or two ‘severes’, or an awful lot of ‘highs’, and this is the way that they are using it. It is not clinical use—I think that that is the term you used, Lisa. They are using it like a get-out-of-jail card, or a not-out-of-my-budget card. At the first assessment, my mother was found to be ‘high’, because she could not go any higher on cognition—they had taken away ‘severe’ and ‘priority’. She would have been ‘severe’ or ‘priority’, because she did not know who she was, let alone anyone else; she was barely speaking. When they came along six months later, they found that, on cognition, my mother was ‘low’. Now I was told by the consultant when my mother was discharged from hospital that it was a deteriorating, debilitating illness—that I was not going to make my mother better, but that she would get worse. So, arguably, the way in which they filled out the tick box system was indicative of my mother getting better, which is not possible. This is where the training thing comes in. You cannot improve, six months later. Thank you for your time.
10.45 a.m.
[221] William Powell: Diolch yn fawr iawn am ddod heddiw ac am y sesiwn y bore yma.		William Powell: Thank you very much for coming today and for this morning’s session.
[222] We are extremely grateful for your time and commitment and for the greater clarity that you have brought to our consideration of this issue, which will be on the morning of 16 July, our final Petitions Committee of this term. Thank you.
Daeth y cyfarfod i ben am 10.45 a.m. The meeting ended at 10.45 a.m.