The independent Taskforce was created in January this year in order to develop a new five-year Cancer Strategy for England. The strategy is due to be ready by Summer 2015 and we have already attended one workshop and made a written submission to the Taskforce.
From the perspective of pancreatic cancer there is much to welcome. In particular the following sections of the document are worth highlighting:
- ‘That there is unacceptable variation in access to and experience of care across geographies, segments of the population and in cancer types’. (page1)
We know from the Cancer Patient Experience Survey that pancreatic cancer patients have a worse experience of the diagnostic, treatment and care pathway than many other cancer types and we hope this will be addressed as the Strategy is developed further. We also need to see specific commitment to tackling cancers like pancreatic cancer where survival remains unacceptably low and hardly changed in the past 40 years.
- ‘That research efforts must be maintained, both in the UK and internationally’, for cancers, like ‘lung, pancreas, oesophageal cancer and most brain tumours [where] survival remains stubbornly low.’ (page 3)
We hope that this specific reference to pancreatic cancer and other cancers of unmet need is carried over into the final strategy, along with specific measures designed to tackle low survival. For instance, we will continue to lobby not just for maintained investment, but increased investment in research into cancers of unmet need like in pancreatic cancer over the next five years. We are heartened by recent developments including the announcement of a significant USA/UK Dream Team investment and hope similar ring-fenced funding may follow in future.
- ‘That some CCG populations have outcomes for some cancers close to some of the best performing countries, but nowhere does this include all of the types of cancers studied.’ (Page 4)
We know that UK pancreatic cancer survival rates lag behind many countries - like the US, Canada and Australia - and that within the UK there are geographical variations. We will lobby to ensure that the new Cancer Strategy will set out to establish and address the reasons for these variations.
- ‘In most cases, patients presenting with symptoms to a GP are referred after the 1st or 2nd visit. But in around of one-fifth of cases - particularly with less common cancers or where symptoms are less specific, patients visit their GP 3 or more times before referral for a diagnostic test.’ (Page4)
Evidence shows that pancreatic cancer patients visit their GP much more frequently than other cancer patients before being referred to hospital. In fact, over 40% of pancreatic cancer patients have to visit their GP 3 or more times, double that for most other cancer types, with many cases of double-digit visits to GPs being made before referral. And we know that half of all patients are diagnosed through an A&E route, rather than by GP referral, again twice that for most other cancer types. We will continue to lobby to ensure that the Cancer Strategy includes measures to reduce the time that pancreatic cancer patients wait for a referral for investigation.
- There are variations in levels of satisfaction and amongst different group of patients. For example, patients with rare and less common cancers have lower levels of satisfaction than patients with common cancers . (Page 5)
As noted above, we know from surveys that pancreatic cancer patients report one of the worst levels of NHS experience compared to other cancer patients across a range of variables. We are glad this variation is recognised and will work to ensure that the new Cancer Strategy includes measures to improve the experience of pancreatic cancer patients.
- ‘That many patients do not have a satisfactory end of life experience. For example, only one in 5 of those cancer patients who die at home have complete pain relief all the time in the last 3 months of their life. (page 6) And ‘a commitment to ensuring that a majority of patients have a ‘good death’’ (page11)
We know from the many people we speak to every day through our Support Line that end of life care, including pain relief is not always satisfactory for pancreatic cancer patients. Improvements to end of life care was one of the areas we highlighted at the Taskforce workshop session, as well in our written submission. It is good to see this vital issue being treated prominently as the Cancer Strategy is developed.
- The new strategy will ‘seek to address variability in access to optimal diagnosis and treatment in access.’ (Page 7)
‘At the heart of the new strategy will be proposals designed to streamline the diagnostic pathway for patients and reduce the burden of diagnosis relayed visits to GPs.’ (Page 13)
‘One example is the multi-disciplinary diagnostic centres model… and consider whether a broader range of triage tests should be provided in the primary care setting.’ (page 13)
‘Whether telephone triage between primary and secondary care would be beneficial.’ (page 14)
System changes for earlier diagnosis also need to reduce, where possible, the number of repeat visits required.’ (P14)
‘Single tier system for referral of patients with suspicious symptom…the Strategy will consider whether all referrals for testing for suspected cancer should be regarded as urgent.’(P14)
This is music to our ears - and reflects all of the things we’ve repeatedly called for in our Early Diagnosis Summit report, evidence given to the All-Party Parliamentary Group on Pancreatic Cancer Inquiry, in our Diagnosis Manifesto for Scotland and, subsequently, in our written and verbal representations to the Cancer Taskforce. We hope this emphasis on early diagnosis and more efficient referral pathways will be developed further by the Taskforce in the final Strategy.
- ‘We will consider whether CCGs should be required to…undertake an audit of diagnosis by emergency admission.’ (page14)
Again, this is good news. An audit of this kind was a recommendation made by the APPG on Pancreatic Cancer in its 2013 report. It is particularly important for pancreatic cancer as nearly half of all diagnoses are currently made via emergency admission route.
- More holistic care, including patients’ mental care, social care, and greater emotional and practical support, for example dealing ‘with the financial consequences of a cancer diagnosis.’ (P14&15)
Again, this was a major issue we raised in our written submission.
All in all, the Statement of Intent includes some welcome acknowledgements, ideas and priorities as the Taskforce moves forward. We will continue to work hard to ensure that the final Cancer Strategy follows through on this promising start by setting out a framework of actions that will have a positive impact on survival and patient experience. Our future submissions to the Taskforce will therefore call for enhanced pancreatic cancer awareness, diagnosis, treatment, care and research over the next 5 years and beyond.