Item 6 on the agenda this afternoon is the Member debate under Standing Order 11.21 on pancreatic cancer, and I call on Lynne Neagle to move the motion. [Interruption.] Can we settle down, please? Thank you. Lynne.

Motion NDM7191 Lynne Neagle, Dai Lloyd, David Melding

Supported by Delyth Jewell, Joyce Watson, Mark Isherwood, Neil Hamilton, Neil McEvoy, Vikki Howells

To propose that the National Assembly for Wales:

1. Recognises that one in four people diagnosed with pancreatic cancer in the UK do not survive the disease beyond a month and three in four do not survive beyond a year, many because they were not treated quickly enough.

2. Recognises in Wales there are around 500 new cases of pancreatic cancers every year, and that, in 2015, some 508 people were diagnosed with pancreatic cancer and in the same year some 451 people died of the disease.

3. Recognises pancreatic cancer is the deadliest common cancer with a dismal prognosis that has hardly changed in the last 45 years.

4. Welcomes Pancreatic Cancer Awareness Month (November) and the work Pancreatic Cancer UK does to promote awareness around the lowest surviving and quickest killing cancer.

5. Calls on Welsh Government to take action to improve survival rates for people with pancreatic cancer in Wales through:

a) faster treatment, by learning from fast-track surgery models in England that have shown promising results;

b) earlier diagnosis, by learning from Rapid Diagnostic Centres being rolled out in England and piloted by Swansea Bay University Health Board and Cwm Taf Morgannwg University Health Board; and

c) holistic support, through timely dietary and nutritional support to enable patients to better tolerate treatment.

Motion moved.

Thank you, Deputy Presiding Officer. I'd like to thank my fellow Assembly Members from across—

Hang on a minute. Can we settle down, please? This is as important a debate, I think, as the rest of the agenda this afternoon, so if we're going out, can we go out—? Lynne needs to have our full attention. Thank you. Lynne.

Thank you. I'd like to thank my fellow Assembly Members from across the Chamber who have supported today's pancreatic cancer awareness event and those who jointly brought forward this debate. I'm very pleased that the Chair of the health committee, Dr Dai Lloyd, will be closing the debate today. Dai will, I know, voice the concerns that many of us have about how different solutions are identified for different cancers in the context of the new single cancer pathway, because for the patients we are discussing today, more than almost any others, time is of the essence.

In almost every way, the world has changed beyond all recognition in the last 50 years. In November 1969 the world watched and wondered at the successful Apollo 12 moon landing. Technology was changing, and fast, and so was healthcare. In the early 1970s only one in four cancer patients in the UK could be expected to survive their disease for 10 years or more. That figure is now two in four. In 1969 infant mortality in this country was at 18.32 per 1,000 births. It now stands at 3.7.

Why this context—this long, 50-year view of the world and medical advance? Because looking back from here to that black-and-white age, it is the things that haven't changed that serve to shock us the most. Over that period, one thing has not changed: survival rates for pancreatic cancer have not changed. Despite all the progress we've made in technology, communications and in healthcare, for nearly the entire lifetime of the NHS the dial has not shifted when it comes to this lowest surviving and quickest killing cancer.

The statistics—the unmoving statistics—are plentiful and shocking. Pancreatic cancer is the tenth most common cancer in the UK, but receives just 1 per cent of research funding. Due to late diagnosis, seven out of 10 people with pancreatic cancer will never receive any treatment, and only one in 10 will receive surgery, which is the only curative solution. Fewer than 6 per cent of those affected in Wales will survive for longer than five years—take a moment to reflect on that.

In the shadow of these numbers are real people, real stories and very real suffering. So, I want to use the remainder of my remarks today to give voice to three stories—a bereaved relative, doughty campaigners and a leading clinician. Three stories that combine to make one point: we must do better.

First, I want to tell the story of my constituent Linda. I want you to imagine what Linda's Christmas was like 10 years ago. Having lost her cousin, Noel, and her uncle, Robert, to pancreatic cancer in recent years—both died within weeks of their diagnosis, despite being given years to live—Linda was now faced with the uncertainty of her seriously unwell mother. She'd gone through two years of poor health, various treatments and uncertain diagnosis. Then, 10 years ago, she suffered a rapid decline over the Christmas period, only to be told in January 2010 that she too had tumours on her pancreas, liver and stomach. The discovery was too late. There was nothing the doctors could do—that dreaded phrase: 'We'll make her as comfortable as we can.'

Linda pays tribute to the care given by nurses when her mum got home for her final three weeks, and to her own daughter, who held it together for her nan until she was out of sight and off the ward, when she could safely break her heart in her mum's arms. Linda is still angry—rightly angry—that her mum heard her diagnosis alone, that she didn't hear about the trials available, that no-one thought, through those crucial months, about the possibility of a family connection, but, most of all, that she hears the same stories today. Linda has turned her hurt into a campaigning zeal that would put any politician in the shade. Linda and her family deserve to hear about more progress than we've made in the last five years, let alone the last 50.

The second story comes from Bilal Al-Sarireh, the clinical lead in Wales on pancreatic cancer, and I want to thank him for working with my office to give a detailed update on the challenges that exist today. Professor Al-Sarireh says that, having seen such huge progress since establishing Wales's first specialist centre a decade ago, he now worries that he is letting patients down because they cannot access treatment fast enough, regardless of how quick or how urgent their diagnosis. I'm sure the Minister will agree with me that we never want to hear clinicians express those feelings of guilt and regret for circumstances they cannot control. I hope that the Minister will look seriously at the concerns being raised by the professor about the challenges facing Wales's national centre, where the numbers of patients being offered curative surgery is dropping from around 20 per cent to under 15 per cent, and where palliative bypasses are now on the increase, a reflection of two challenges.

The first is the question of ensuring that funding is matching increased demand, and, secondly, in terms of logistics, Wales is currently an outlier when it comes to having standalone centres for specialist treatment of liver and pancreatic disease. Can the Minister therefore consider establishing a single hepatopancreatobiliary cancer centre in Wales? According to experts, this will help recruit, retain and sustain the right specialists and bring the right skills to Wales to make real progress on reducing waiting lists. Time is of the essence: that is the message you hear time and time again from all those touched by pancreatic cancer.

And, finally, I want to pay tribute to Nick and Wendy Horler, who run Blaenavon post office in my constituency. Once again this year, they have lit up their premises in purple lights to mark Pancreatic Cancer Awareness Month. Like many campaigners we will hear about today, they have done this year in, year out. Like Linda and her family, like Professor Bilal Al-Sarireh and his team, and so many others gathered here today, the Horlers are waiting to see what the years of campaigning and raising awareness will deliver. Three stories with one point: we must do better. For sufferers of pancreatic cancer, time is always of the essence. Too much time has now passed with too few strides made in treatment, survival rates and awareness. I urge all Members to support today's motion to give more time, more hope, to the people impacted by this terrible disease. Thank you.

Can I pay tribute to Lynne Neagle for that speech, but also for the work you've done in this area? I also want to put on record my thanks to Pancreatic Cancer UK for the information drop-in that they organised today, which I know many Members attended and we found the information there to be particularly valuable.

Deputy Presiding Officer, over the past 50 years, diagnosis and treatment strategies for cancer patients have evolved rapidly, transforming patient outcomes. Yet, despite the major advancements witnessed in other areas of oncology, improvements in pancreatic cancer patient outcomes have largely stood still. In sharp contrast to the remarkable growth in the survival rates observed in other disease areas like lung, breast and prostate cancer, the overall five-year survival rate for patients diagnosed with pancreatic cancer is just 5 per cent across the globe, and that's not really improved substantially since the 1970s.

Earlier this year, analysis positively suggested that cancer survival in the UK is improving, but it still lags behind other high-income countries, so we've got that part of the problem as well. Indeed, despite the improvements we are seeing, the UK still performed worse than Australia, Canada, Denmark, Ireland, New Zealand and Norway in the study published in The Lancet. Cancer Research UK says that the UK could do better and called for more investment in the NHS and the systems and innovations that support it, and that would be really important for pancreatic cancer and the prospects of improving outcomes.

As we've heard, one of the problems is that the early stages of the disease can be silent and symptoms are often not picked up, and therefore the disease is discovered late in its course. And also I think there is a general poor public perception of pancreatic cancer and awareness, and this, added to the standard diagnostic tools frequently leading to delays in identification, and that they're not as advanced as some other areas of cancer treatment—the outcomes are that, by the time someone knows they have the disease, curative surgery, for instance, is not any longer viable.

But, despite these rather daunting statistics, there have been signs of improvement and we need to build on these achievements, and obviously we've got great organisations that I've referred to campaigning actively in this area, as well as those that have the disease or their families, and we know what powerful political force is brought by those that come and give witness of their personal experience and that of their loved one. So, I think it's really important we build on this to increase the wealth of established research that we have and ensure that incremental improvements are valued and then seen across the field, and then combined with other advances so that we have a holistic approach. There are many, many things that need to be got right and improved to give an overall advance in prognosis and also to extend the treatment options available. So, I think that really is key to what we need to do, but, above all, I think it is this drive to get earlier diagnosis, and that leads to improved treatments, and we need to ensure that that applies in the field of research but also that we take patients and the public with us so that their awareness is improved also.

I was very pleased to read earlier this month that Dr Catherine Hogan at Cardiff University's European Cancer Stem Cell Research Institute had been awarded £373,000-worth of funding by Cancer Research UK to understand how pancreatic cancer cells develop, with the aim of developing diagnostic tools for the future. So, we have a proud record also in Wales and in our universities and medical schools, and that's something, I think, that we need to contribute and ensure that we take that to its maximum extent and back it as well. But getting those major funding sources and bringing them into Wales is important.

But I finish, really, with this plea that we all get more aware of pancreatic cancer, both in terms of where it is as a public health issue—the tenth most common cancer, as we've heard—but also it will ensure that we drive this up the political list of priorities so that we see the advances that have been pleasingly achieved in many areas of cancer treatment come to pancreatic cancer. Thank you very much. 

November is Pancreatic Cancer Awareness Month. It is a disease that too few people are aware of in any detail, but, if it's something that's touched your family, you will be acutely aware of how devastating it is. I know that many of us contributing to this debate will be indebted to organisations like Pancreatic Cancer UK for sending us statistics, and I'd also like to put my thanks on record to them. Of course, those statistics are damning, particularly the statistics that illustrate how the odds are stacked against someone once they've finally been diagnosed with pancreatic cancer. As we've heard, seven in 10 people with pancreatic cancer will never receive any treatment, and only one in 10 will receive surgery. But we have to remember that behind all those statistics are people, families who will be traumatised by the swift onset of this disease. It is too little understood, and, by the time it is diagnosed, it's usually too late to do anything.

Pancreatic cancer is the quickest-killing cancer and the cancer with the lowest survival rates. The figures are stark, but what's starker still is how doggedly static those figures are, that there has been so little improvement for decades in survival rates. Of course, there is no hierarchy of pain. Every cancer can be devastating, and every cancer can have seemingly miraculous stories, but there is a feeling that pancreatic cancer, the silent killer, also has the weakest voice when it comes to funding considerations, to research and to public understanding.

I support Pancreatic Cancer UK's call for there to be a national plan for pancreatic cancer to improve diagnosis rates, to raise awareness of the symptoms amongst the public and GPs, to get critical investment into research, so that diagnosis rates can be improved and the chances of survival increased for thousands of people.

The public awareness element of this is critical. My grandmother died of pancreatic cancer in January 2005. She'd been a little off-colour at Christmas, but, like so many patients who don't know that these symptoms are masking something deadly, she put off going to the GP. When she did go, no-one had recognised the symptoms. She wasn't alone in that—16 per cent of pancreatic cancer patients actually visit their GP seven or more times before getting a diagnosis. A few days after Christmas, she went to the GP again, and they didn't know exactly what was wrong but they sent straight to hospital. It was over the new year period, so the disease still wasn't spotted for too long. My grandmother was left calling out in delirium because of the pain, and when the symptoms were finally understood and the fantastic palliative care team came on board, she died three days later. She'd been in agony for weeks. It was incredibly distressing, for my mother, especially, because the disease seemed to come from nowhere, and yet, within days, nurses had to cut off her wedding ring because of the pain. She had only really been ill for three weeks. It was cruel, it was all-consuming.

I know that other members of my family, including me, are at a greater risk, because my grandmother died of pancreatic cancer, and her mother before her. We have to improve diagnosis of this horrible disease. More funding is urgently needed for research, as well as a dedicated awareness campaign about the tell-tale symptoms of the disease. Please, let's make this investment so that fewer people have to die like my mam-gu.

I thank Lynne, Dai and David for tabling this important debate. As the other contributors have pointed out, pancreatic cancer is the deadliest of all the cancers, yet the majority of people have never heard of it. I became acutely aware of pancreatic cancer over 30 years ago, when doctors discovered a tumour on my pancreas. Thankfully, in my case, the tumour was benign, but the symptoms that I had were awful: it was falling down, it was fainting without any awareness at all, because the level of insulin had been totally disrupted. I didn't know what was wrong, and it took two years to diagnose. I had insulinoma, rather than cancer, but, until that point, I was unaware of pancreatic cancer.

Sadly, 93 per cent of people diagnosed with pancreatic cancer will die within five years, and a quarter of those diagnosed die within the month. Unfortunately, this is mainly as a result of lack of awareness of the signs and symptoms of the disease. Over two thirds of adults in the UK are unaware of the symptoms of pancreatic cancer, according to Pancreatic Cancer UK. Because of this and the fact that the disease has non-specific symptoms, early diagnosis is almost impossible, and, as with all other cancers, early diagnosis is key to long-term survival.

This is why I'm happy to support this motion today and play a small role in promoting awareness of the disease. However, we have to do more. We need a dedicated public awareness campaign. There have been national public information campaigns for lung cancer, breast cancer, bowel cancer and bladder cancer, but no such campaign for pancreatic cancer. There is no simple screening test for this awful disease, so we have to rely on members of the public being aware of any symptoms and trying to seek help. Thank you.

I'd like to thank everybody moving this today—Lynne Neagle, Dai Lloyd, David Melding, and the supporters Delyth Jewell, Joyce Watson, Mark Isherwood, Neil Hamilton, me and Vikki Howells as well. I really didn't realise what an aggressive cancer pancreatic cancer was until earlier this year, unfortunately, when an old colleague of mine, my first ever head of department in my first full-time job, Phil Davies, was taken far too young. Phil was a great manager and I learnt a lot from him, and it was shocking for every one of us who knew Phil, and, of course, more shocking for the family that the cancer was so aggressive and that it takes over so quickly. So I wanted to pay tribute there to Phil Davies.

I note that the fast-track surgery in England, on a more optimistic note, is having promising results, so that's really, really pleasing, and I welcome the early diagnosis centres that are being rolled out. This is something that, for once we can all agree on, and I really hope that this being brought forward today brings positive results. Thank you for giving me time to speak.

Thank you very much. I call on the Minister for Health and Social Services, Vaughan Gething.

Thank you, Deputy Presiding Officer. I'd like to thank Lynne Neagle and Members from all parties who have supported today's debate in raising what is an important and poorly understood issue by the wider public. Now, I recognise the devastating impact that pancreatic cancer can have on people and their families, especially so given its poor diagnosis. For anyone in any doubt, in particular in hearing the opening of this debate, and indeed the contribution from Delyth Jewell, they should be left in no doubt about how aggressive a form of cancer this is.

The motion recognises that one-year net survival rates for pancreatic cancer were around 28 per cent between 2012 and 2016, when the most recent data was available, making it a cancer with one of the worst survival rates. We've seen around 520 new cases, and sadly, around 480 deaths a year. One-year net survival for stage 1 pancreatic cancer is higher than 60 per cent based on the data for 2011-14, so whilst time-to-treatment is a factor, a key issue appears to be that pancreatic cancer tends to present in a much more advanced stage when treatment options are more limited. Now, the Government will be abstaining, but I'm largely supportive of the motion. I'd like to offer a couple of corrections about the record, and of course all Members will have a free vote, outside the Government, on the motion itself.

According to our statistics from 2015, we saw 531 new cases of pancreatic cancer. It's also really important to recognise that outcomes have improved over the past 20 years for pancreatic cancer, and particularly so in the past decade. One-year net survival has improved by over 7 percentage points and five-year survival by over 4 percentage points between 2007-11 and 2012-16. So, there are real improvements that have been made by our NHS. However, the basic point that Lynne and others make in moving this debate is correct: this is a cancer with very poor outcomes, and there is a real need to make progress.

Surgery is a curative option for a range of cancers. I was pleased to hear Lynne mention this in her opening contribution, because regularly, when we talk about cancer services, we have a debate around drugs, when actually, surgery is much more likely, in most cases, to be the curative option. It's part of the reason why there's a focus on improving surgery rates across a range of cancers, and that, of course, includes pancreatic cancer. That goes back to having earlier diagnosis so that curative surgery is a real option.

On the proposal about having a specific centre, I've listened and I will ask the clinicians at the Wales Cancer Network to consider that further, to give me advice to go into our cancer delivery plan for Wales and the work of the implementation group to understand what that would mean and the benefit that could provide for people in Wales.

But I do want to also recognise the work that Pancreatic Cancer UK does in raising awareness of the impact of pancreatic cancer, and, of course, they get to take part as a member of our Wales Cancer Alliance. I meet that third sector campaigning alliance on a six-monthly basis, and they are represented on our national leadership group for cancer services. The motion called for us to learn from fast-track surgical models in other countries and I'm happy to commit to that and to see what lessons there are for Wales. It's work that we regularly do in looking at other parts of the world, including, of course, other parts of the UK. It also calls for us to learn from the rapid diagnostic centre pilots in two of our own health boards, and I can certainly commit to doing that. That's funded through the cancer delivery plan for Wales, and I look forward to the evaluation that is being provided and discussed by the network.

Finally, it calls, of course, for holistic support for patients to prepare them for surgery. I've made it clear on several occasions that I expect health boards to be doing this as a routine part of surgical pathways, and that is absolutely part of the improvement work that we need to do to make the best use of the surgical skills of our staff, but, importantly, to improve outcomes. So, we're committed to doing all that we can to build on the progress made. Our approach has been to focus on improving services and outcomes for all cancers rather than to focus on those with the poorest outcomes. We think it's important on the point of equity, but also because many of the things it will improve in the outcomes for pancreatic cancer are applicable to improving outcomes for most cancers too. Our medium-term approach is set out in the cancer delivery plan, taken forward by the implementation group, and supported by more than £5 million of annual investment.

One of the key focuses has been on detecting more cancers at an earlier, more treatable stage. That's underpinned by new referral guidance and a national programme working together with primary care and the piloting of the two rapid diagnostic centres for people with vague symptoms. It also includes the optimisation of screening programmes, an important ally of work in our diagnostic programme to provide streamlines access to investigations for cancer. The aim of all of this is to ensure that people are investigated promptly, and in the small minority of people who do have cancer, that their diagnosis is made quickly.

A key area of focus for us is the introduction of the single cancer pathway. That is much more than just a new way of measuring cancer waiting times. This is a UK first, and it means that patients will no longer be artificially divided into those who present in primary or secondary care. They'll all be measured against the same pathway, and most importantly, from the point of suspicion, rather than the receipt of referral or the decision to treat. As well as being a clearer way of measuring waits, it means that people's investigation and treatments have to start earlier to meet the 62-day time limit. Within 62 days, clinicians can treat patients according to their clinical priority. I know that Pancreatic Cancer UK have called for a 20-day treatment target from diagnosis, but the 62-day single cancer pathway includes a diagnostic phase and the start of treatment.

In order to support health boards to deliver the single cancer pathway and to reduce variations across Wales, and to deliver care in line with the best professional standards, we are also introducing nationally optimised tumour site pathways. These are descriptions for each tumour site to set out how health boards should plan to deliver their services. The first of three tranches of these pathways was published through a Welsh health circular in October this year, and I expect pancreatic cancer to be included in the next tranche early in the new year. These pathways are highly ambitious, and health boards will work towards them over time, supported by the national peer review programme for cancer.

Further developments, such as the cancer research strategy and the replacement of the cancer informatics system will also play a role in helping us to deliver the improved outcomes and excellent services that every Member who has spoken and listened to this debate today will want to see. Once again, I want to thank Members for bringing forward this debate, and I hope and expect we can continue to make real progress in the years ahead.

Thank you. Can I now call on Dai Lloyd to reply to the debate?

Diolch, Dirprwy Lywydd. Can I start off, first of all, by congratulating Lynne Neagle on her leading work here as regards bringing this motion before us this afternoon, emphasising, critically, the fact that pancreatic cancer needs a particular focus? As a GP of 35-years standing in Swansea, I know that pancreatic cancer is tough to diagnose, but, 'Always ask about the family history', I always say. But it's tough to diagnose, it's tough to treat, it's tough to research, and ultimately, it's tough to survive it. 

Now, Lynne, in opening this debate, has made the case, both coherently and brilliantly, really, as regards we have to step up to the mark here in Wales. Survival rates for pancreatic cancer have largely not changed. I take on board what the Minister has just said about some percentage changes, but when you hear the diagnosis in primary care that somebody has pancreatic cancer, it is not a cause for celebration.

Now, huge strides have been made in medicine, as Lynne outlined, and in other cancers like childhood leukaemia, Hodgkin's disease and many other cancers, as outlined, survival rates have been dramatically, radically transformed over the years. All of those conditions did have a particular focus at the time, though, in terms of we said at the time, 'Childhood leukaemia: why are children dying? Let's have a particular focus on that. Let's sort it out.' That was 25 years ago, now. But, it hasn't happened for pancreatic cancer, and that's why we're having this debate today.

The distressing case studies that we've heard from Lynne, from Delyth, from Neil McEvoy and others demand action and a focus on pancreatic cancer. And by demanding focus, we mean that 'focus' means increased funding for this particular cancer, and it does actually mean serious consideration, and I would be campaigning to set up this specialist tertiary surgical centre. I think that is the transformational element that needs to happen. As the Minister said, surgery is curative, so let's enable the very best surgery targeted at this hugely malignant cancer. That single hepatobiliary pancreatic surgical centre needs to happen. That is the transformative action; that is the fast-track surgery; that's the early diagnosis; that's what needs to happen.

Because it is really tough to diagnose this. People present with really vague symptoms that could be anything or nothing, as Delyth said in her distressing case involving mam-gu. It is hugely difficult to pick up the signs, because we can't, as GPs refer everybody who comes along with a bit of tummy pain and not feeling well and feeling a bit off colour, otherwise our hospitals would be full—[Interruption.] They are. And diagnostic tests to improve research have worked for other conditions that we thought never had a diagnostic test. That's why the emphasis is on research here, as well, to find that test. 

So, I'm grateful to David Melding as well for paying tribute to Pancreatic Cancer UK, a tribute to their great work. Much research is going on and it's research that will transform the field. People say, 'You're always talking about research, it's a bit tedious', but that's where all these medical advances have come about. Tremendous research enables medical technology, medical treatments, and medical advances to truly take off. Cancer Research UK, Cancer Research Wales—everybody is doing a phenomenal amount of innovative research. And Delyth reminded us that November is Pancreatic Cancer Awareness Month, and again, emphasising the trauma of the diagnosis, and the need for a national plan, as we're already saying—this national focus uniquely for pancreatic cancer. 

I'm grateful also to Caroline Jones for her personal experience and her support for this motion, and also for Neil McEvoy's words on the fast-track surgery, and his personal experience. I'm grateful to the Minister as well, before closing, in terms of, obviously acknowledging the excellent work that is done by our excellent staff in the NHS at the moment. Improvements are happening, but, uniquely for pancreatic cancer, we still haven't seen that step change in survival rates. So, we have to have that focus on funding, on that setting up of a single hepatobiliary pancreatic surgical centre; I look forward to the day—the Minister could even open it. We need a focus. I hear the words about the single cancer pathway—absolutely fantastic—but within that, there needs to be a particular emphasis on what we can do about this silent, and not-so-silent killer, that is pancreatic cancer.

So, cancer of the pancreas—in closing, Deputy Presiding Officer—demands a particular focus. It's had a particular focus here in the Chamber this afternoon. I am grateful for the contribution of all Members. Yes, we can learn from other countries, other centres, we can learn from the rapid diagnosis pilots. We need to take all that on board but also work and step up to the challenge and support the motion. Diolch yn fawr. 

Thank you. The proposal is to agree the motion. Does any Member object? [Objection.] Therefore we defer voting under this item until voting time. 

Voting deferred until voting time.