National Assembly for Wales
Health and Social Care Committee
Inquiry into the progress made to date on implementing the Welsh Government’s Cancer Delivery Plan
Evidence from Pancreatic Cancer UK– CDP 39
Committee Clerk,
Health and Social Care Committee,
National Assembly for Wales,
Cardiff Bay, CF99 1NA
23rd April 2014
Dear Sir/Madam,
Re: Cancer Delivery Plan Inquiry
1. Pancreatic Cancer UK welcomes the opportunity to respond to the Health and Social Care Committee’s Inquiry into progress made in implementing the Welsh Government’s Cancer Delivery Plan.
About Pancreatic
Cancer UK
2.
Pancreatic Cancer UK
is the only national charity fighting pancreatic cancer on all
fronts: patient and carer support; information; campaigning; and
research. We provide a UK-wide, expert and personalised support and
information service, staffed by pancreatic cancer specialist
nurses. This provides easy access to the best and most up-to-date
information on pancreatic cancer to patients, their carers and
families. We also run online discussion forums for pancreatic
cancer patients, their families and carers to enable them to share
experiences, information, inspiration and hope.
2.1 We fund innovative research that
makes the most impact with limited resources and leverages
additional investment - and development of new talent - through our
own research expenditure.
2.2 Working closely with patients and their families and carers, clinicians and other healthcare professionals, researchers, politicians and policy makers we seek to increase awareness of the disease and campaign to bring about improved outcomes in care and treatment.
Incidence, Mortality and Diagnosis
3.
As the WCISU’s
April 2014 summary report showed, pancreatic cancer has the lowest
one-year and five-year survival rates of the 21 most common
cancers, the latter figure standing at under 4%. Pancreatic cancer
is currently the sixth most common form of cancer in Wales, with
487 new cases diagnosed and 440 deaths recorded in 2012.
3.1 As with the rest of the UK,
diagnosis of pancreatic cancer is very often made at an advanced
stage. Because of this across the UK only between 10% and 20% of
patients with pancreatic cancer are eligible for curative
surgery.
3.2 This is largely because of late
diagnosis: over half of pancreatic cancer patients across the UK
are diagnosed via emergency admission with more than 40% of
patients visiting their GP three or more times before they are even
referred to hospital. Often GPs mistake the symptoms for some other
condition and begin treatment for an unrelated condition.
3.3 Section 6.2 of the Cancer
Delivery Plan describes the need for Local Health Boards to raise
awareness among the public and GP awareness of cancer symptoms
generally. Given the late diagnoses of many pancreatic cancer
patients specific campaigns may be needed to help tackle the
extremely and persistently low survival rates for pancreatic
cancer.
3.4 We are particularly keen to see
GPs provided with Risk Assessment Tools to help them identify cases
correctly and early. We would also like to see GPs given faster
access to investigations, including CT scans, something which
we are only aware of happening routinely in in a limited number of
places, for example, through a rapid access clinic in
Southampton.
Access to
treatment
4.
Section 6.3 of the
Cancer Delivery Plan talks of ensuring patients have fast and
effective treatment and care, whilst section 6.4 refers
specifically to caring for those with metastatic cancer. As NICE
guidance applies to Wales, but Wales does not have a Cancer Drugs
Fund, patients in Wales are potentially missing out on new
treatments until NICE makes a decision. This is the case currently
with Abraxane, which is approved for inclusion on the CDF list of
drugs in March 2014, but is not due for a decision from NICE until
January 2015.
4.1 The only alternative to waiting
for NICE approval is through Individual Patient Funding Requests.
However, this seems, from anecdotal evidence, not to provide
patients with access to the treatments they need and is a long and
complicated process. Put simply, with only a 2-6 month median
survival rate from diagnosis, time is something that those with
advanced pancreatic cancer do not have.
4.2 We would like to like to see this system reviewed to remove the current inequality of treatment between patients in Wales and England.
Patient Care
5
Section 6.4 of the
Plan sets out a goals for improving patient care, including better
communication. We support the introduction of the Wales Cancer
Patient Experience Survey as this will help to track progress in
delivering improved care and patient information and communication
in future. We hope this survey will become an annual fixture.
5.1 The topline Survey results show
variations in the patient experience for different cancer types.
This mirrors findings in the NHS England Cancer Patient Survey,
where pancreatic cancer patients report less satisfaction with
information they are given, longer amount of time and more visits
to their GP before diagnosis etc. These variations need to be
assessed and where significant differences in performance are
identified, actions plans should be drawn up to remedy the
situation.
5.2 Section 6.4 also talks of the
need for Multi-Disciplinary Team models of treatment. We fully
support this approach and especially want to see that all
Pancreatic MDTs include a dietician. From the many contacts our
Support Line receives, it is clear that not all patients are
receiving the vital dietary advice and treatments they need to
manage their condition most effectively. This is true across the
whole of the UK.
Miscellaneous
6 Local Health Boards have an important role to play in improving cancer care across Wales. We welcome the fact that each LHB has to produce its own cancer delivery plan but are concerned that there is a lack of consistency in approach. We would also welcome specific sections within those plans aimed at tackling different cancer types, or targeting action on more recalcitrant cancers – i.e. those types of cancer which have seen five-year survival rates remain below 20% for a long period of time – to help bring about some much needed improvement..
Thank you for the opportunity to submit evidence to the national assembly for Wales’ Health and Social care Committee Inquiry.
Yours sincerely