I am pleased to bring forward this debate today, which was drafted alongside the Charity Pancreatic Cancer UK.
The Motion, which has cross party supporters here, proposes that the Senedd:
1. Notes:
a) that November was Pancreatic Cancer Awareness Month, and that 16 November 2023 was World Pancreatic Cancer Day;
b) that the survival rates in Wales and the UK still lag behind much of the rest of Europe and the world;
c) that pancreatic cancer is tough to detect and that diagnosis takes too long with slow processes and multiple tests leaving people in the dark;
d) that once spotted, people face huge obstacles getting the information and care they need to be well enough, to have treatment with many people feeling written off with no support plan in place, and no help to manage symptoms; and
e) and that once diagnosed, only 3 out of 10 people get any treatment, the lowest proportion of all cancer types, and that half of people die within a month of diagnosis.
The motion also proposes that the Senedd “Understands that people with pancreatic cancer urgently need a faster, fairer, funded pathway throughout their diagnosis, treatment and care”.
Pancreatic cancer is the deadliest common cancer, affecting 500 people a year in Wales, and 10,000 people a year across the UK.
3 in 5 of those are diagnosed at a late stage.
Sadly, over half will die within three months of diagnosis and only 6% in Wales will survive for more than five years.
By comparison, the likelihood of surviving other cancers beyond five years in Wales is 50%.
These statistics are shocking and shameful, and have barely changed in fifty years.
However, with a fast and fair treatment and care journey, and the smart investment to make it happen, more people would have a chance to survive.
Wales has lagged behind, and now ranks 31st out of 33 countries with comparable data on five year survival for people with pancreatic cancer.
Whilst outcomes for other cancers have improved, things have stayed the same for people with pancreatic cancer.
The survival gap between pancreatic and other cancers has doubled in the last 50 years.
7 in 10 people in the UK diagnosed with pancreatic cancer are receiving no treatment – either because their cancer is detected too late, or because their referrals take too long for treatment to be effective.
Pancreatic Cancer UK are a UK-wide charity, providing support services, funding research and campaigning for better treatment, care and support for those with pancreatic cancer.
They have recently launched their “Don’t Write Me Off” campaign, calling for a faster, fairer, fully funded treatment and care pathway for people with pancreatic cancer.
Developed alongside a group of experts, healthcare professionals and people with lived experience, this pathway would improve treatment and survival rates and bring about better outcomes for people affected by pancreatic cancer.
They state that:
“more than 250 people across Wales could live longer and better lives over the next five years if this pathway was implemented now. Earlier and Faster diagnosis is needed, people with pancreatic cancer have no time to wait. With no specific screening or tests, and vague symptoms which are often mistaken for less serious conditions, diagnosis for pancreatic cancer comes far too late for far too many”.
The NHS Wales Collaborative has developed a National Optimal Pathway for Pancreatic Cancer - but we’re still waiting for the Welsh Government to fully fund and implement this.
Pancreatic Cancer UK therefore calls on the Welsh Government to:
- implement the Welsh National Optimal Pathway for suspected and confirmed pancreatic cancer, which ensures a 21- day treatment standard from diagnosis of pancreatic cancer to first treatment.
- And to provide long-term funding to Health Boards so they can implement and sustain the pathway for pancreatic cancer to help ensure earlier and faster diagnosis for patients.
As they state “too many people with pancreatic cancer aren’t getting the support and care they desperately need. They are left fighting the system, and the care they get depends too much on where they live and where they get their treatment”.
One example is prescriptions for Pancreatic Enzyme Replacement Therapy (PERT) which is a simple tablet, readily available from pharmacies, that replaces enzymes so that even when the pancreas stops working, food can still be digested. It reduces debilitating symptoms and helps build strength for treatment – but more than a third of patients in Wales don’t receive it.
Yet, the guidance is for all patients to be prescribed this, to improve their quality of life.
We need to know:
- what assessment the Minister has made of the merits of implementing the National Optimal Pathway for pancreatic cancer?
- What assessment she has made of pancreatic cancer survival rates in the Wales in relation to both other nations in the United Kingdom and other comparable nations; and what steps she is taking to improve them?
- What assessment she has made of the merits of undertaking an audit of the pancreatic cancer workforce in Wales?
- And whether the Welsh Government will commit to funding specialist pancreatic cancer roles in every Health Board?
The Welsh Government should commit to funding specialist pancreatic cancer roles in every Health Board, so that everyone gets advice, care and support from a dedicate expert professional, from the point of diagnosis.
Planning and funding an effective workforce is essential, because people with pancreatic cancer need fast, high-quality, wrap-around support and treatment from the moment they contact their GP onwards.
We know that there are shortages across almost every role connected to cancer, from the bedside to the lab, and that the UK will be short of 4,000 cancer nurses by 2030.
It is now 2 years since Macmillan Cancer Support warned that Wales is facing a cancer nursing crisis that could leave soaring numbers of patients without the right medical care and support, with the number of specialist cancer nurses in Wales needed to increase by 80% to support the 230,000 people predicted to be living with cancer in Wales by the end of the decade.
There is concern, however, that there remains a lack of understanding in Government of where these workforce gaps currently are and how they directly impact people with the deadliest common cancer.
The Welsh Government must take this opportunity to carry out a comprehensive audit of the pancreatic cancer workforce, identify gaps, and urgently act to fill them.
They must then utilise learnings from the audit to allocate sustainable funding to ensure the Optimal Care Pathway can be implemented and save lives.
Investing in world-class research Funding into pancreatic cancer research has been too little for too long.
Even 10 years ago, only £5m was going into research for pancreatic cancer every year, compared to over £30m for leukaemia.
An investment of £35 million every year across the UK, including Wales, is needed to deliver vital improvements to transform survival for pancreatic cancer.
We know this approach works, because funding for research into leukaemia – which has a very similar incidence rate to pancreatic cancer – has almost doubled since 2000, and with this has come a 16% fall in mortality.
Pancreatic cancer could be the next disease to benefit from improved survival rates through increased research funding.
Pancreatic Cancer UK have so far invested over £12 million into pancreatic cancer research, and going forward, have committed to funding even more pancreatic cancer research every year.
Wales is already home to exciting and groundbreaking research for pancreatic cancer.
In Cardiff, they have funded over £250,000 of research by Dr Beatriz Salvador Barbero, who is investigating the biological changes that take place in early pancreatic cancer development.
Understanding what causes pancreatic cancer to initiate and progress could help us improve the early detection of the disease, and open up new avenues of treatment to block these processes, increasing chances of survival.
The data available on cancer care in Wales is considerably more limited than that of other UK nations.
For example, the only data available on social deprivation is in relation to mortality rates.
Much of the data gap relates to looking at outcomes, and treatment and care pathways, in relation to deprivation, ethnicity, disability and LGBTQI+ identity.
Without this data, it is difficult to identify the impacts of health inequalities, and see clearly where people are having different experiences of care in relation to their background.
Pancreatic Cancer UK calls for the Welsh Government to publish data at the same level as England, where anonymisation can be retained.
They also encourage Welsh Government to go even further, providing data on ethnicity, disability and LGBTQI+ identity, in order to understand the impacts of these characteristics on the experience of cancer care in Wales.
Setting a higher bar for data around cancer experiences could not only make Wales a leader in the UK for understanding and acting upon health inequalities in cancer care, but also recognise that people with pancreatic cancer urgently need a faster, fairer, funded pathway throughout their diagnosis, treatment and care.
