Huntington’s Disease

Jim Shannon Excerpts

Wednesday 9th November 2022 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

It is always a pleasure to speak in this Chamber. As the DUP health spokesperson, I wanted to add my contribution today. I congratulate the right hon. Member for Leeds Central (Hilary Benn) on setting out the case so well and on doing so from a passionate, intimate and obviously knowledgeable point of view. It was hard to listen to some of the things he said, not because he does not put them over right, but just because, when we hear the emotion in his voice, we understand that he has a very personal interest in this subject. So, again, I thank him personally, as I think we all do in the Chamber today. I just want to add my contribution and, as I always do, to give a Northern Ireland perspective.

This is a difficult subject to deal with. As the right hon. Gentleman said, this disease does not just affect the person who has it; it can potentially affect the children as well. I think that makes things harder, because if someone has any doubt whatever as to whether they carry the gene, that will impact what they do when it comes to marriage, having children and having relationships, but also what will potentially happen to them in the latter part of their life. Therefore it is important that we take the right action to make our services better, and that is what we want to try to do.

May I say what a pleasure it is to see the shadow Ministers, the hon. Members for Leicester West (Liz Kendall) and for Paisley and Renfrewshire North (Gavin Newlands), and to see the Minister in her place two days running? We are doing well here, so we are. The Minister tries extremely hard to answer the questions that we put forward, so I thank her for that. I am very pleased to see the Labour shadow Minister—a fellow Leicester City supporter—in her place. We won 3-0 last night, which was a good result. That is by the way and nothing to do with this debate; it is just for the hon. Lady and me to glory in that victory, as we do, personally and collectively.

We need to have better mental health services for patients suffering with this disease and to encourage more funding into research. The right hon. Member for Leeds Central was right about the importance of research; I will comment on research later, but he was right to mention the need for it. In a way, this debate follows on from some of the questions about research in the debate on pancreatic cancer that I secured in Westminster Hall yesterday. We have to focus on research in a deeper and stronger way, and I look forward to hearing the comments of others about what we can do for our constituents.

Health is a devolved matter for Northern Ireland and is not the Minister’s responsibility, but I want to sew a Northern Ireland perspective into the debate. I will replicate the perspective heard in the right hon. Gentleman’s comments, and talk about what we in the United Kingdom need to do in Northern Ireland, Scotland and Wales. I look forward to hearing from my friend and colleague in the SNP, the hon. Member for Coatbridge, Chryston and Bellshill (Steven Bonnar), who always makes a significant contribution on health issues.

Huntington’s services across the UK lack efficiency and funding, especially in Northern Ireland. That is not the Minister’s fault, but it shows what this is all about. One of my constituents made me aware of the fact that there are only two Huntington’s-qualified nurses across the whole of Northern Ireland—for a population of 2 million. Wow! It shocks me to the core when I read that and have to convey the situation in Northern Ireland. As a result of the right hon. Gentleman raising my awareness of this matter, I will take a deeper interest in it from a Northern Ireland perspective. I will follow this up with Robin Swann, the Northern Ireland Health Minister.

In that population of 2 million, the rate of Huntington’s has increased from 6.4 people per 100,000 in 1991 to 12 per 100,000—almost doubling over that period of time. Approximately 223 people have been diagnosed with the disease back home, leaving many with the possibility of getting it genetically. That is one of the worst things: someone could be carrying the disease without knowing—this rare condition is also known as the disease of families.

The hon. Member for Blaydon (Liz Twist), who has left her place, is the chair of the all-party parliamentary group on rare, genetic and undiagnosed conditions. Huntington’s is a rare condition, and sometimes the symptoms are not as prevalent, making it even more essential for people to be aware of them. I would subscribe to the hon. Lady’s line of thought that this should be categorised as a rare disease: statistically, the numbers suffering from this disease are not large, and it is rare in the effect that it has. Government have a policy to deal with rare diseases, so maybe it is time to consider this as one of those, Minister.

Huntington’s Disease Association Northern Ireland has been instrumental in providing support for families—it is not all doom and gloom in Northern Ireland for the families and those who support them. The association has a lovely motto: “Families at the heart of all that we do”. That conveys the importance of what it does, bringing families together so that they can help and reach out to each other. The right hon. Member for Leeds Central referred to that point, and I would reiterate it.

The organisation offers care to loved ones and encouragement throughout the process. Not only that, but it provides hope for those dealing with Huntington’s. Currently, 15 clinical trials of different treatments are under way. We should take some encouragement from that and have hope of a cure. With 15 clinical trials taking place, there is hope that one day soon—not too far away—we will have a cure. If we have that cure, we can deal with these issues better personally.

Sorcha McGuinness of HDANI has stated that, by the late stages of the condition, people will require 24-hour care, as the right hon. Gentleman referred to. They will be unable to move, speak or sometimes even swallow. Other diseases we have spoken about, such as motor neurone disease, are similar.

[Liz Saville Roberts]

The hon. Gentleman is speaking movingly and powerfully. Members will be concerned when we hear from constituents who are being refused personal independence payments. The procedure that applicants—people with Huntington’s disease and their families—have to go through to get PIP, to which they are entitled, is almost a test of their perseverance. As MPs, many of us have to deal with these things, but there must be a better way of dealing with families affected by conditions such as Huntington’s. Given what they are likely to need and that their care needs are so great, we must find a better way of dealing with this issue.

[Jim Shannon]

I thank the right hon. Lady for her intervention, which clearly outlines another issue. It is not always health alone that is an issue; it is also about not being able to work again, as the right hon. Member for Leeds Central said. There is the financial impact on families. There is going on to benefits, which are probably alien to those applying. The system needs a wee bit more compassion for those who are under financial pressure. When they state that they have Huntington’s disease, the reality of what that means should figure in how they are helped through PIPs and other benefits. More often than not, we—elected representatives—come to an acknowledgment and knowledge of those matters through constituents who apply for PIPs. We understand a bit better what they are doing. There is one lady in my office who does nothing but benefits—five days a week. That gives Members an idea of the magnitude of this issue. The right hon. Lady is right, and I thank her for her intervention.

As the disease becomes increasingly debilitating, there is a need for more trained specialists in it. I ask again the question asked by the right hon. Member for Leeds Central, and we look to the Minister for help: what can be done, and what is being done, to increase the numbers of trained nurses? The disease affects the whole of this great United Kingdom of Great Britain and Northern Ireland, so what discussions has the Minister had, or will she have, with the devolved Administrations to ensure that there is a universal strategy for moving forward that encompasses us all?

A nurse who is qualified in Huntington’s plays a key part in the patient’s life, as the link to mental health. Physically, the patient’s body is dying—that is what is happening. Mentally, the disease affects them with anxiety, depression and all those issues. They feel it as it overtakes them and as their bodies decay. The nurse is also the link to neurology, GPs, social services and occupational therapy. I come back to the comment about PIPs made by the right hon. Member for Dwyfor Meirionnydd (Liz Saville Roberts). When our staff fill in PIPs forms, we look at how occupational therapy can add aids that help patients around the house. There is only so much that can be done for Huntington’s, and perhaps other diseases, but there is a key role for the occupational therapist in helping families to deal with it, whether that means a bed downstairs, an extension to the house or a walk-in shower. At certain stages of the game, of course, those things will not help, but perhaps early on they can.

In the area covered by the South Eastern Health and Social Care Trust, which includes my constituency, patients are referred to the Belfast Health and Social Care Trust specialist nurse, and the cost is covered by the Health and Social Care Board. Patients living in the western, northern and southern trust areas in Northern Ireland have no access to Huntington’s disease specialist nurses. Some sufferers have described the condition as a vacuum of silence—that is what it is. They feel almost isolated—on their own—and they are very much dealing with all the issues without help. When people are living in complete isolation, with no assistance, it is important that there is someone they can turn to.

Although I appreciate that health is devolved in Northern Ireland, the situation unfortunately remains the same in the rest of the UK, as the right hon. Member for Leeds Central said and as others will as well. There is no equality of care, and Huntington’s disease patients still feel left behind. Through this debate and through awareness raising, we must try to address that. If the number of people diagnosed with Huntington’s disease continues to rise, the Government must review its status as a rare disease. I said that earlier on, and I say it again. Perhaps we need to move it into a priority category as soon as we can.

I look to the Minister, as I will continue to do whenever she is responsible for the answers, and to her counterparts in the devolved Administrations to initiate funding for greater care for those in the early and latter stages of the disease. We referred to those 15 clinical trials earlier. The right hon. Member for Leeds Central referred to the clinical trials and how important it is to find a cure, help that research and bring new symptoms to light.

Familial carers desperately need their loved one to have professional care, so that they can seek some respite, without being sick with worry about them. They need respite care—we say that often, but Huntington’s disease is such an all-encompassing disease that it totally takes over the life of families. That respite care has to be there to give them a half-day or even a few hours off from the 24/7 focus they have. Some indication in the Minister’s response that there will be some help with respite care would be helpful.

Pancreatic Cancer Awareness Month

Jim Shannon Excerpts

Tuesday 8th November 2022 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

I beg to move,

That this House has considered pancreatic cancer awareness month.

It is good to see everyone here. I thank Members for attending and look forward to their contributions, especially those from the shadow Ministers. In particular, I look forward to the contribution from the Minister, who is back in post again. I wish her well and look forward to her summing up of the debate.

It is a pleasure to speak on the subject and I declare an interest as chair of the all-party parliamentary group on pancreatic cancer. I am pleased that my application to the Backbench Business Committee for a debate was successful, and I have a number of asks. I pay special tribute to the hon. Member for East Dunbartonshire (Amy Callaghan), who is sitting to my right. She was chair of the APPG, and when her health was not the best, she asked me whether I would take it over. That seemed to be the unanimous opinion of the members of the group, so I was pleased to do so.

I owe the hon. Lady a special thanks. She is the lady, as she always is, who presented the issue and pushed it, and I just follow in her footsteps. That is a fact. I am pleased to see her getting back to health and strength, and look forward to her contribution, which I am sure will be factual and helpful to the debate.

With pancreatic cancer, silence is deadly. That is where we are—very much conscious of pancreatic cancer and what it does. It is a disease that gets too little attention and too little funding. That is one of my asks of the Minister, and I prepare her for it in advance. Later, I will refer to some stats and figures, which will reinforce the issue. Thousands of people die of pancreatic cancer every year, so it is critical that we secure early diagnosis and ensure that the funding for research is there. Ultimately, we must raise awareness of the disease—for example, through today’s debate.

Pancreatic cancer is the deadliest common cancer of all, which underlines the importance of the debate, and the stats surrounding it are truly shocking: 10,000 people across the United Kingdom of Great Britain and Northern Ireland are diagnosed with the disease every year, and half the people diagnosed die within three months of their diagnosis. That is alarming, and I want to present some evidence about how the disease affects people, particularly those in my constituency.

Sadly, only 7% of those who are diagnosed survive five years, and even fewer survive longer than that. The five-year survival rate for pancreatic cancer in Northern Ireland is one of the worst in the world at 4.9%, and it puts us 32nd out of 36 countries in the survival charts. That tells us all about where we are. The Minister is not responsible for health in Northern Ireland because health is a devolved matter, but I want to use the debate to highlight the issue and to show where we can push for the improvements that we would like to see and wish we could have. Back home, I have been pushing the Minister of Health on that for a long time, and I want us to have such a strategy on the UK mainland in the hope that we can do the same in turn in Northern Ireland.

When I am in my constituency office, my heart sinks when people come in for help with their personal independence payment form and inform me that their illness is pancreatic cancer. I feel my stomach sinking and my heart dropping, and I take a deep breath, because I know that I am looking across the counter at someone—man or woman—who, unfortunately, has limited time left in this world. Much more often than not, pancreatic cancer is a death sentence. My office helps people with benefits, PIP forms and universal credit, which eases them through the financial issues. There is a health burden, but the other burden is finance—when someone can no longer earn the money that they need to pay the bills and get through.

November is many things, but we are here because it is Pancreatic Cancer Awareness Month. All around the United Kingdom of Great Britain and Northern Ireland, people have been lighting up their homes and local landmarks purple, holding fundraising events for charities such as Pancreatic Cancer UK, and having conversations. It is so important to have conversations to raise awareness of the deadliest common cancer of all.

[Mr Gregory Campbell (East Londonderry) (DUP)]

I congratulate my hon. Friend on securing the debate and on the work that he is doing in the all-party parliamentary group. He is highlighting the importance of November being Pancreatic Cancer Awareness Month. Does he agree that early detection is key? Unfortunately, at the moment pancreatic cancer has the lowest survival rate of all common cancers. Awareness is critical in assisting people, moving toward early detection and trying to get those figures down.

[Jim Shannon]

I totally agree with my hon. Friend. I will give an example and mention a lady’s name; I have her permission to do so. I am pretty sure that the hon. Member for East Dunbartonshire knows this lady, and others may also know her story, which illustrates where early detection and diagnosis can make all the difference. We need to focus on the three symptoms to look out for, which can lead to the early detection and diagnosis that are so important.

Pancreatic cancer is a brutal illness, and there is no better way of understanding how brutal it is than by hearing how it impacts an individual and their family. To that end, I will take the opportunity to share the story of Rebecca Buggs, who is the face of the Pancreatic Cancer UK campaign this Pancreatic Cancer Awareness Month. She is a nurse, who looked after pancreatic cancer patients and was well aware of the symptoms. Ultimately, her awareness of those symptoms saved her life.

The Pancreatic Cancer UK campaign is called “No Time to Wait”, and there is no time to wait. There must be an instantaneous response to symptoms—my hon. Friend the Member for East Londonderry (Mr Campbell) mentioned the importance of that—because for patients with pancreatic cancer, delay means disaster. Rebecca, who is 43, knows that all too well. She has been a nurse for 21 years, and over the course of her career she has prepared many patients for the Whipple procedure—the only operation that provides a possible cure for pancreatic cancer. When Members hear her story, they will understand the importance of that.

On Christmas day last year, almost 11 months ago, Rebecca began to feel very unwell. She believed it was just a covid-19 infection, as many do; if someone is not well, they think it must be covid, because covid has been prevalent for the last two and a half years. Three days later, her husband noticed that she was jaundiced and said, “Becki, you look like a Minion”—not because that is a derogatory term, but because Minions all have yellow faces. After contacting the on-call registrar, whom she fortunately knew because of her role as a nurse, she was told to head straight to her hospital for blood tests and scans.

On 4 January this year, 10 days after her symptoms began, Rebecca was told the devastating news that she had pancreatic cancer. Luckily, her cancer was caught early enough for her to have the Whipple procedure, for which she had prepared many patients over all those years in her job. For most patients, it is far too late; only 10% of people are able to access that surgery. One of the things I will ask the Minister about is access to surgery; I know that she will have an answer to our queries, as she always does.

In the campaign, Rebecca talks incredibly powerfully about how this time was for her and her family. It is not just about the impact on the person who has the disease; it is about the impact, in this case, on her husband, her children, her mum and dad, and everyone else. She talks about how scary it was to be the one on the operating table after preparing so many for the procedure herself, highlighting the experience of so many with this devastating cancer. She said:

“These were the hardest 11 days of my life. I was away from my children, Jacob who’s 9 and Georgia who’s 8, and they couldn’t come and visit me because of COVID.”

It is vital that we drive improvements so that more people like Rebecca can get access to life-saving treatment for this cancer. That is why Pancreatic Cancer UK’s “No Time to Wait” campaign is vital. We need to ensure that people can get a diagnosis and treatment or surgery—whichever is the case—as soon as possible in order to give them the best chance of survival. I share Rebecca’s concern that so many people are struggling to get GP appointments or referrals for the right tests when they have concerning symptoms such as stomach ache, backache and indigestion. As Rebecca says,

“they become so ill and jaundiced that they get admitted to A&E and by then it’s too late.”

When the symptoms and the diagnosis are there and the tests are done, access to surgeons and surgery is so important.

Rebecca’s point about people with pancreatic cancer being diagnosed in A&E is particularly important. We often think in this day and age that if someone receives a cancer diagnosis, that will happen in a quiet consultation room in a hospital or perhaps in their local GP surgery, but more often than not it happens in a crowded room. More often than not—I say this with respect to doctors and GPs—it may become repetitive for GPs to tell patients that they have a diagnosis of whatever it may be, but that is a life-changing statement for the patient.

A person came to see me this week and told me that his wife had been diagnosed with cancer, albeit not pancreatic cancer. The doctor had told her very matter-of-factly that she had it, and she was absolutely devastated. What the doctor perhaps could have done was told her husband, who could then have conveyed the news to his wife in a way that would not have been such a shock.

People might expect that the doctor will give them their diagnosis and follow that up with a clear treatment plan for how they will treat and beat their cancer. In 2022, we expect that there will be a clear path to a cure and a good chance that, eventually, the person will be given the all-clear. But with pancreatic cancer, that just is not the case. More than 60% of patients with pancreatic cancer get diagnosed only in an emergency setting. I think that if anything at all indicates pancreatic cancer, the doctors and those who are aware of it need to prioritise it immediately, because speed is of the essence. Some 70% of people do not receive any active treatment at all, because they are too unwell by the time they are diagnosed; it is almost too late for them. Let that sink in. Imagine receiving a pancreatic cancer diagnosis and then immediately being told, “By the way, there is no possible treatment plan or cure.” That is devastating.

We have to improve; we have to make the situation better. We have to try to respond in such a way that we add comfort, compassion and understanding—and, more importantly, the opportunity for surgery. It bears repeating that more than half of people who receive a pancreatic cancer diagnosis will die within three months. Wow—that is another blinder of a statement. It really underlines the seriousness of the matter. For people with pancreatic cancer, there really is no time to wait.

What is the reason behind my saying all this? Primarily, it is that people with pancreatic cancer are being diagnosed far too late. We are all familiar with the fact that the earlier someone is diagnosed, the better their chances of survival. But some things are needed before people can get that crucial early diagnosis. I will outline some of them, and I hope that the Minister will be able to respond in a way that is helpful.

First, we all need to spread awareness of the symptoms of this cancer, which are stomach and back pain, indigestion, unexplained weight loss, and jaundice. The colour caused by jaundice would obviously be noticeable right away, but all the other things are more difficult. Someone might have a bit of backache and a bit of indigestion now and again. People should always look out for any weight loss, and sometimes even weight gain. Of course, it is striking how common the symptoms on that list are. We would not naturally associate them with pancreatic cancer, but it is vital that people get checks if they experience those symptoms with no explanation. It might not be just backache or a bit of indigestion; it might be more.

Secondly and simply, there needs to be a test. It is all well and good going to the GP with these types of symptoms, but we also need to equip GPs with the tools that they need to start ruling things out. Will the Minister tell us how we can help our GPs to have all the equipment in place to make early diagnoses, and to refer people for the right test as soon as possible if they have even a minute suspicion that a person might be facing pancreatic cancer? Currently, there is no such test, but research is ongoing to try to create one, which could make a huge difference by allowing people to be diagnosed at an early stage.

We often speak about research and development. I probably mention it in every health debate—not to be repetitive, but because it is a real issue. Research and development is so important to find a cure and a way to help patients. Will the Minister tell us what can be done to increase research and development in this area? I will give a shocking figure that underlines the importance of research, which is the third key to unlocking earlier diagnosis. Currently, pancreatic cancer is the fifth most common cause of cancer death, but it receives just 1.4% of cancer research funding in the UK. Without sustained investment in innovative research, we will not be able to improve survival rates at the pace that we must.

To date, Pancreatic Cancer UK has invested over £10 million in pancreatic cancer research, including research that aims to develop a simple test for the cancer, but it is a charity, so its funds are limited. Will the Minister tell us what can be done to help pancreatic cancer research and development? It is sometimes easy to say this, but I genuinely believe in my heart that the Government have to step in and help, because pancreatic cancer is so brutal and singular, and it ends life very quickly. Can we please have some direction on what can be done to help?

To achieve major breakthroughs, we need the research and development upgraded. We need extra money spent, well above the 1.4% of cancer research funding that pancreatic cancer receives at the moment. I say with respect that if Pancreatic Cancer UK can raise some £10 million, which is quite a bit for a small charity, the Government need to match that and do a wee bit better. Despite everything we have heard today, we need the charity’s ambition and spend to be matched by the Government and other national research funders.

In addition to driving crucial research breakthroughs, the Government must ensure that they take action to improve outcomes for people with pancreatic cancer. I know that lots of cancers are deadly, but pancreatic cancer is the deadliest. Because of that, it needs a wee bit of extra assistance. That is particularly important at the moment, as we are heading into what will be a very challenging winter for the NHS, with the pandemic, staff shortages and underfunding pushing it to breaking point. By its very nature, the press is quite negative, and it is sometimes hard to be positive about all the different news that we hear in the media, on TV and in the papers, but we need to have pancreatic cancer research and development, and response, at the centre of our cancer strategy.

Without action, there is a risk that things will get even worse for people with pancreatic cancer, as any additional delays to vital appointments, tests and treatments—the three things we need, along with an assurance on the speed of response—will have an adverse impact on people who have no time to wait. There has been inaction on pancreatic cancer for too long, but together we can change that. Indeed, I believe it is our duty to push for better for those who are faced with this deadly cancer.

We need to see urgent action, and there are things that the Government could do now to start shifting the dial. First, they must publish the 10-year cancer plan as soon as possible. Back in January, the then Health and Social Care Secretary, the right hon. Member for Bromsgrove (Sajid Javid), committed to publishing a 10-year cancer plan that would transform this country into a world-leading force for cancer care and treatment. Our previous Prime Minister recommitted to doing that, but we have since had silence—I say this with respect—from the new Prime Minister, who has had plenty on his plate, and the new Health and Social Care Secretary. Pancreatic cancer has been neglected by successive Governments, as have cancer plans. As a result, survival rates have not improved in decades. There has been a lack of action over time on pancreatic cancer, and we really need to ensure that work is put in place.

A funded and ambitious cancer plan would be a real step in the right direction, demonstrating our national ambition. I am proud to be British and proud to have a Government that lead. We need to lead on this, and we need to do so very quickly. That will give us something to aim for in driving up outcomes and survival, and it will help us to give people hope. That hope has not been there for years, and it needs to be there now. I say this very politely but sincerely and firmly: currently, we are a rudderless ship, and a cancer plan would give us direction and hope. The World Health Organisation advises that all nations need a cancer strategy to give this killer disease the attention it deserves. Through this debate, through our Minister and through our Government, let us become a country that can do better and does not fail to meet that standard.

To make a real difference, the cancer plan must have a specific focus on less survivable cancers, including pancreatic cancer—the ones that kill the most and kill the earliest. Unfortunately, it is possible to receive a diagnosis of pancreatic cancer and, within three months, to be no longer in this world. The plan must include investment in the workforce so that everyone can have a diagnosis and treatment plan within 21 days. That is the best practice that Pancreatic Cancer UK and clinical experts believe should be the reality everywhere. I make a special request for the Minister to address that. I say this often, but it does not lessen the issue, because it is important: I am proud of being in this Parliament of the United Kingdom of Great Britain and Northern Ireland, but we need to share what we have done regionally in Scotland, Wales, Northern Ireland and England in order to do things better. There may even be a necessity for a UK-wide policy and strategy.

Getting a diagnosis quickly is crucial in ensuring people can get the treatment they need as soon as possible. In addition, the cancer plan must deliver the funding needed to enable specialist cancer nurses to support everyone with pancreatic cancer as soon as possible after their diagnosis, helping them manage their symptoms and maintain a good quality of life. We must ensure that, when the family and financial pressures are gathering around someone and they sometimes feel like it is just them fighting the disease, that is not the case. We need to wrap our arms around people and tell them that they are not on their own.

I hope the Government will commit today to publishing the cancer plan. That is critical; it is at the core of the issue, and we need it. I encourage the Minister to meet Pancreatic Cancer UK and people affected by this awful disease to find out more about the “No Time to Wait” campaign and how the 10-year cancer plan can finally shift the dial. I know the answer will be yes but, for the purpose of having it in Hansard, will she commit to having that meeting, which I think will enable Pancreatic Cancer UK to press, push, emphasise and raise awareness of the matter?

There has been silence around pancreatic cancer for too long, but through this debate, together—collectively as MPs, with the Minister and regionally—we can change that attitude. We need to speak up and demand immediate change on behalf of those who have already lost their lives and the families left to grieve, those who are living with pancreatic cancer right now, and those who face a diagnosis in the coming months. We want to give them hope. We want them to know that if they get the disease, their treatment will be prioritised through A&E, their diagnosis will be quick, the response will be equally quick, and surgery will follow.

We have work to do in Northern Ireland, and I understand that—the figures I gave earlier emphasise it only too well—but we also have work to do across this great United Kingdom. I am asking for attention to be paid UK-wide in the form of a pancreatic cancer strategy, with information and guidance shared in every area of this United Kingdom of Great Britain and Northern Ireland.

I am conscious that others want to contribute and I very much look forward to their contributions, including those of the shadow Ministers and, in particular, the Minister. I know that she, along with all of us, will want to do all she can to save lives. I look forward to her response, and I thank the Backbench Business Committee for giving me the opportunity to speak on this subject.

In Pancreatic Cancer Awareness Month we have a duty as elected representatives in this House to deliver a message. With respect, we hope that the Minister and the Government will respond centrally, with a pancreatic cancer strategy that we can all look up to, so that when people with pancreatic cancer come to my office, as they often do, to fill in PIP forms, I can then tell them that there is some hope and show them what they need to do.

[Several hon. Members rose—]

--- Later in debate ---

[Carla Lockhart (Upper Bann) (DUP)]

Thank you for your indulgence in allowing me to speak, Mr Hollobone. I commend the hon. Member for Strangford (Jim Shannon) for securing this debate; he is a tireless champion for his constituents and for many issues that impact the lives of people across the United Kingdom.

The words pancreatic cancer strike fear into us all, as it is widely recognised to be the most deadly form of this terrible disease. We all know of people in our own lives who, when faced with that diagnosis, have fought valiantly, but ultimately have succumbed to this aggressive form of cancer. Sadly, I know of some who are no longer with us, who were diagnosed during the pandemic and so received the devastating news alone. They were not allowed to have anyone there to comfort them, offer spiritual support or bring someone with them on their treatment journey. That is cruel in the aftermath of such a cruel diagnosis.

As with all cancers, early detection of the disease and the resumption of treatment is of fundamental importance. It is when considering this aspect that we must look closely at access to GPs. As Members across the House have said, over the last two years we have seen how obtaining any appointment, even by telephone, is increasingly difficult. Face-to-face appointments are almost impossible to secure for many people. The vague symptoms that often present for those with pancreatic cancer are unlikely to trigger any form of consultation, particularly face to face. They are also most likely to lead to a patient giving up the fight to see their GP, given the barriers to consultation.

We have rightly spoken today about the awareness of symptoms and the importance of early detection. My concern is the pathway to investigation of symptoms; detection is blocked off at that first point of community healthcare. We need to focus on GP services and ensure GPs are resourced and then willing to return to pre-pandemic practices. Colleagues have rightly spoken about research and the importance of increasing funding. We have seen encouraging developments in recent years, including in the research led by Queen’s University Belfast. I join others in asking for increased funding towards treatments to help save lives.

I will finish by commending some of the charities in my own constituency and in Northern Ireland, which are so forward thinking in raising funds to support those who receive a diagnosis, as well as the families who have to live with that diagnosis. They also help to fund research. I commend NIPANC, a charity headed up by Mr Mark Taylor and supported by a family in my constituency, Mrs Susan McLaughlin and her two sons, Aaron and Adam. They lost a father and a husband, Colin. Adam was just three when Colin died very suddenly from pancreatic cancer. I want to commend Mrs Victoria Poole, who volunteers with Pancreatic Cancer UK and who also lives in my constituency. They are all strong advocates who want to see change and to see the Government stepping up to the mark with regards to pancreatic cancer research.

[Jim Shannon]

I am reminded of a lady I met when I was a Member of the Assembly between 1998 to 2010. Her name was Una Crudden, and she brought the issue to my attention. She was a great advocate of how to deal with pancreatic cancer; she was raising awareness, even back at that time. I often think of her because she was a determined lady and a great supporter of her family. They were a family who were very much together. I am minded that she struggled with that disease for four or five years and ultimately passed away, but it is the Una Cruddens of this world—my hon. Friend referred to some of her constituents—who bring this matter to the fore.

[Carla Lockhart]

Absolutely. I knew Una from my Stormont days as well—she was a courageous lady who deserves to be mentioned in this debate.

I pay tribute to all those who are involved in charities. They support our healthcare system and I commend them today because they are the true heroes. The NIPANC motto for Pancreatic Cancer Awareness Month is “Time Matters”, and the message today is that time matters: understand the symptoms and seek urgent, early diagnosis.

--- Later in debate ---

[The Minister of State, Department of Health and Social Care (Helen Whately)]

I congratulate the hon. Member for Strangford (Jim Shannon) on securing this important debate, and for his work as chair of the APPG on pancreatic cancer. He is right: we should talk about pancreatic cancer; we should talk about how to improve survival rates and diagnosis rates; and we should talk about how we can raise awareness of pancreatic cancer. As we do so—including in this very debate—that in itself will make a difference, and if we do not debate this now, during Pancreatic Cancer Awareness Month, then when? I believe in seizing the moment.

I welcome the speeches from the hon. Members for Strangford, for East Dunbartonshire (Amy Callaghan) and for Upper Bann (Carla Lockhart) and my hon. Friends the Members for Stroud (Siobhan Baillie) and for Carshalton and Wallington (Elliot Colburn), who also seized this moment to speak about pancreatic cancer. The hon. Member for Strangford spoke movingly about Rebecca Buggs, whose children were just eight and nine years old at the time she had surgery. I am very glad that because she was diagnosed early, she was able to have surgery, but we know that, sadly, her experience is the exception not the rule.

The hon. Member spoke about the importance of raising awareness of symptoms such as stomach and back pain, indigestion, unexplained weight loss and jaundice, and the importance of getting those symptoms checked if there is no explanation. He also spoke about research as the key to earlier diagnosis. On one of his questions, I will answer straightaway that, yes, I would be delighted to join him for a meeting with Pancreatic Cancer UK. I will come to his other questions as I go through my speech.

My hon. Friend the Member for Stroud mentioned that she wants to help everybody and, knowing her well as a colleague, I know that that is absolutely true. She also mentioned the catchphrase, “The clue is in the loo,” as mentioned by other hon. Members. She spoke movingly about one of her constituents, a young woman who spent five years going to and from her GP with symptoms, including fatigue and bloating, which brought to life how hard this cancer is to detect. She also talked about the PERT treatment, which I will come to in a moment.

It is very good to see the hon. Member for East Dunbartonshire, a former chair of the APPG, here and to hear her speaking so eloquently in this debate. She spoke about Barbara, a PE teacher, and about the healthy life she lived. Barbara went many times to get a diagnosis, but it took almost 18 months to get one. Again, sadly, that brought to life how hard this cancer is to detect.

I thank my hon. Friend the Member for Carshalton and Wallington for acknowledging the work that the Government have done, particularly on raising awareness for pancreatic cancer. He talked about the importance of the workforce, which I will come to. He also asked me to visit the Royal Marsden, of which he is rightly proud, and which I would be delighted to do.

The hon. Member for Upper Bann spoke about the importance of access to GPs. She called for more funding into research, and said, rightly, that time matters.

I will come to many of the points that hon. Members have raised, but first, I believe in saying it as it is. Nearly 10,000 people a year are diagnosed with pancreatic cancer, and that figure has steadily increased since 2013. Diagnosis rates increase with age, and from the mid-40s onwards pancreatic cancer is more common in men than in women. Just under a quarter of pancreatic cancers are diagnosed at an early stage, so three quarters are not. About 40% of diagnoses follow an emergency presentation. The one-year survival rate is just 27% and the five-year survival rate is only 7.8%. Although those figures have improved in the past 10 years, they are still bleak for anyone who receives a diagnosis and for their loved ones. That is why it is right to talk about pancreatic cancer.

As with many other cancers, early diagnosis of pancreatic cancer is crucial so that there is the opportunity for successful treatment. One of the Government’s healthcare priorities is to improve early diagnosis of all cancers, and to achieve 75% diagnosis at stage 1 or stage 2 by 2028, compared with the current rate of about 50%. We have opened 91 community diagnostic centres, which have carried out 2 million extra scans, tests and checks, including cancer tests. We are rolling out non-specific symptom pathways so that people with symptoms such as weight loss or fatigue are either diagnosed or have cancer ruled out. We are encouraging people to go and get their symptoms checked. The NHS’s “Help Us, Help You” campaign tackles the barriers that prevent some people from getting their symptoms checked, such as fear about what might be found.

The hon. Member for Enfield North (Feryal Clark) talked about waiting times, and I assure her that we are tackling them. This August, more than 19,000 patients saw an upper gastrointestinal specialist, compared with 17,600 last August, and 17% more patients have seen a specialist within the two-week performance standard. That said, I recognise that the NHS is still not hitting the standard for enough people—it is currently 83%, compared with the 93% standard—so we will continue to support the NHS’s efforts to tackle waiting lists and backlogs.

On treatment, credit is due to hard-working NHS staff who have increased cancer treatment levels to 107%, compared with pre-pandemic levels. The cancer drugs fund has helped more than 80,000 patients, and we are investing £5.4 million in five new national clinical audits of cancer, one of which is focused on pancreatic cancer.

As several hon. Members said, the key to making a big leap forward in survival rates for diseases such as pancreatic cancer is research—research into tests that will achieve earlier diagnosis and research into treatments. The Government spend £1 billion a year on health research through the National Institute for Health and Care Research. The NIHR has funded seven research projects for pancreatic cancer since 2019, with a committed spend of about £3.6 million. That is about 5% of the NIHR’s total funding for cancer research, which is over £73.5 million.

[Jim Shannon]

I referred to the fact that Pancreatic Cancer UK has raised £10 million for research every year, and one of its requests is that the Government match that. I thank the Government very much for the £3.6 million that is going to pancreatic cancer, but is it possible for that extra bit of effort to be made and for the Government to match the charity’s £10 million? I do not want to put the Minister on the spot, but I really do think that is an important issue.

[Helen Whately]

I absolutely hear the hon. Gentleman’s request, which is for match funding for the funding contributed by Pancreatic Cancer UK. I will say two things about that. Another function of the NIHR is to support research where the funding comes from other organisations; it already does that. In fact, it has supported 70 pancreatic cancer-related studies that have been funded by others.

The other point, which the hon. Gentleman may be aware of, is that the NIHR does not actually ringfence funding for specific diseases. That is similar to his match funding point. The NIHR is ready to fund research. It looks at applications for funding from the research community and then allocates that funding by looking at the merits of the proposal. We should encourage more bids for funding for pancreatic cancer research and more bids to go into the NIHR, which would then enable it to allocate more funding. I am assured the NIHR stands ready to fund pancreatic cancer research; it is about getting those applications in to carry out that research. I could publish a highlight notice to flag to the research community the importance of pancreatic cancer, which may go some way to achieving what the hon. Gentleman seeks.

My hon. Friend the Member for Stroud spoke about PERT and asked why it is not prescribed for more people. National Institute for Health and Care Excellence guideline NG85 recommends that PERT be offered to patients with inoperable pancreatic cancer, and NICE includes PERT in its quality standard for pancreatic cancer. NICE guidelines do not replace clinical judgment. They are not mandatory; they are guidelines. However, it is clear that PERT should be discussed between a doctor and a patient so a clinical decision can be made. I heard what my hon. Friend called for and I will look into whether there is evidence that such discussions between doctor and patient are not happening.

My hon. Friend the Member for Carshalton and Wallington spoke about the importance of the workforce and, as the daughter of two NHS doctors and a former Minister for the NHS workforce, I agree with him. In essence, the NHS is its workforce, and I am proud that we are on track to achieve our ambition of 50,000 more nurses. Talking specifically about the cancer workforce, the workforce plan published in 2017 set an ambition to increase the workforce by 1,500 full-time equivalents by 2021. That has been achieved and, in fact, exceeded by 226 staff members.

Since then, Health Education England has been taking forward the priorities in the cancer workforce plan, with an additional £50 million of funding in the last financial year and this one. Also, a significant proportion of the elective recovery funding—£8 billion in the next two years—will be spent on workforce, both on capacity and skills. I assure my hon. Friend that, as the Minister with oversight of cancer care, I will look carefully at whether we have the necessary workforce coming on track now and in the future to achieve our ambitions and aspirations for cancer care.

The hon. Member for Strangford and several others asked about the 10-year cancer plan, and I know hon. Members are keen to hear about progress. More than 5,000 individuals and organisations responded to the Government’s call for evidence. The Government are considering the responses and the next steps, so I may have to disappoint some colleagues who may want to know more, because that is as far as I will go today. I assure hon. Members that I know how strongly they and their constituents feel about the matter.

I have welcomed this debate as a chance to talk about all the work going on to improve cancer diagnosis, treatment and survival rates, and crucially, to talk specifically about pancreatic cancer. Not least because raising awareness of pancreatic cancer is, in itself, an important step towards improving people’s chances of survival, raising awareness of the symptoms and, in turn, encouraging people to contact their GP and get themselves checked. I pay tribute to everyone involved in Pancreatic Cancer Awareness Month, particularly to Pancreatic Cancer UK and to everyone taking part, whether that is walking 30 km this month or doing their own thing to raise funds and awareness. I thank them all for what they are doing. In turn, I will do what I can in Government to support all those efforts and to improve the chances for anyone suffering from pancreatic cancer.

[Jim Shannon]

I thank all hon. Members for their contributions, in particular the hon. Member for Stroud (Siobhan Baillie). It is not a great headline, and not one we want to think about, but hers was, “The clue is in the loo.” That is a fact. The hon. Lady also referred to the medical system as failing, and many of us feel the same. We have to highlight the negatives and then ask for the positives. It is not about negativity all the time; it is about looking for solutions, which is what we all try to do. She also referred to people taking 60 tablets a day and nutritional expertise, which is part of the issue.

My hon. Friend the Member for East Londonderry (Mr Campbell) referred to the Northern Ireland statistics and early diagnosis. My good friend, the hon. Member for East Dunbartonshire (Amy Callaghan), referred to raising awareness of the signs and symptoms: 16% of pancreatic cancers are diagnosed at a very early stage. She referred to her constituent Barbara, as did the Minister. It is humbling to think that that lady had all the symptoms but, after various investigations, nobody could find what was wrong. The hon. Lady and others, including the Minister, referred to better GP awareness, as well as a test that works, which is really important.

The hon. Member for Carshalton and Wallington (Elliot Colburn) rightly referred to the good work that has been done. We often focus on the negatives rather than the positives, but many people are doing good things. He also referred to awareness of the publication of the plan, and he clearly made five calls. He also referred to digital and IT and the steps forward, but we need a workforce of people physically on the ground. He also referred to the good work in his constituency.

My hon. Friend the Member for Upper Bann (Carla Lockhart) referred to the impact on families, which is sometimes forgotten when the focus is on individuals. She also referred to contact with GPs and hospitals, and a pathway to detection, focusing on the GP service. She also mentioned research at Queen’s University Belfast. Her headline was, “Time matters,” and so it does.

As always in these debates, the hon. Member for Coatbridge, Chryston and Bellshill (Steven Bonnar) and I are together. We are mostly on the same side, unless we are discussing constitutional issues, but that is by the way. He referred to pancreatic cancer being the deadliest cancer—the fifth biggest killer in the UK. He also referred to some good work in Scotland with its 10-year strategy. I am a bit envious of some of the things that Scotland does. I thank him for sharing that with us. He also referred to the good work done by charities.

I always look forward to contributions from the shadow Minister, the hon. Member for Enfield North (Feryal Clark), which always get close to the heart of things. She referred to pancreatic cancer as the deadliest of common cancers. The figures from her constituency— I think this is right or not far away—of 161 people diagnosed with pancreatic cancer and 153 deaths are shocking. She implored the Government to bring in early diagnosis and improve the cancer backlog. She referred to nearly 400,000 people waiting for a cancer diagnosis and other things. She referred to the workforce, with more nurses needed. Her headline was, “War on cancer.”

Lastly, I thank the Minister, as I always do sincerely, as we all do. We understand the Minister’s deep interest in the subject matter. She grasped the issues we want addressed and said to seize the moment. She also referred to Rebecca Buggs, the lady I mentioned. There is a need for research and development. The Minister referred to the bleak figures of 25% diagnosis, with 75% not diagnosed. She recognises the issues and I believe she also recognises the solutions. That is why I welcome her commitment, when she said that more is needed.

Matched funding for Pancreatic Cancer UK was referred to, with a figure of £10 million, and £3.5 million or £3.6 million committed by Government. The Minister will do that. The hon. Member for East Dunbartonshire and I and others have a meeting with the Minister, and I thank her very much for that. We look forward to it and thank the Minister for that commitment.

We also welcome the 50,000 new nurses that the Government have committed to. It is important to have a knowledgeable workforce. We also welcome the 10-year cancer strategy. Those are things that we all agree on. We look to the Minister to lead the charge for the 10-year strategy, because it is important to have that in place. I conclude by thanking everyone for their contributions, especially the Minister.

Question put and agreed to.

Resolved,

That this House has considered pancreatic cancer awareness month.

Oral Answers to Questions

Jim Shannon Excerpts

Tuesday 1st November 2022 Commons Chamber

[Will Quince]

I thank my hon. Friend for her question. She is a passionate campaigner on this issue. I recently responded to a debate on this issue led by her. She also chairs the all-party parliamentary group on rural health and social care. She is right, and we have developed an apprenticeship route for almost all professions in our NHS, allowing people to join the health and care sector immediately on an earn-as-you-learn basis. We continue to work hard to develop pathways into health and care professions, including via our groundbreaking blended online learning programmes.

[Jim Shannon (Strangford) (DUP)]

In terms of district nursing and community midwifery, is the Minister aware that there are real security concerns about entering homes alone, and that that plays into resignations in many rural areas? Will he address that by providing security devices so that rural, isolated nurses and staff know that they are not alone and are safe?

[Will Quince]

The hon. Gentleman raises an interesting point. It is not something that has come across my desk in the two days I have had this portfolio, but I will of course meet local integrated care system leaders, and if it is something that they are calling for, I will look to see what we can do to assist.

World Menopause Day

Jim Shannon Excerpts

Thursday 27th October 2022 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

It is a real pleasure to speak in this debate. The reason why I wanted to be here was, first, to support the hon. Member for Swansea East (Carolyn Harris), but I also commend the right hon. Member for Romsey and Southampton North (Caroline Nokes) for all that she has done. I wanted to be here because my wife went through the menopause. The two hon. Ladies will know it, but others will know it as well. It is not because I am any wiser than anybody else; it is because, from the close relationship that I have with my wife, which is pretty understandable, I perhaps appreciate more than most, from a man’s point of view, what it means for a lady to go through all those extreme circumstances.

I recognise the passion of the hon. Member for Swansea East in relation to the challenges of menopause, a word that she has put on the lips of nearly everybody in the media—on the radio and in the papers. Therefore, whenever the hon. Lady has brought these things forward, I have always been here to support her, and I wanted to do that today. I apologise, Mr Hollobone. You know where I was; we had lost 50 minutes in the main Chamber and that was the reason why I could not be here on time. However, I want to make some points very quickly.

What needs to be addressed is the lack of specialist treatment and care for menopause and the issues that can arise as a consequence. I hope that the Minister can give us some idea of the position on specialist care. That specialist care needs to be in all the hospitals that we have across the United Kingdom. I know that it applies to us in Northern Ireland, where the Minister does not have responsibility. In Northern Ireland, we have the Kingsbridge Private Hospital, which opened the first menopause clinic in Northern Ireland. It is great to have that, to have a private clinic, but provision is needed for those who cannot source treatment and care from the private clinic because they do not have the financial resources to do so. That puts the emphasis on the NHS. It is only right that access to specialised treatment and care for menopause is implemented in the NHS as well. We need to see specialist menopause treatment rolled out in all hospitals. We need to provide for women experiencing the difficulties of menopause the personally tailored treatment that they unquestionably deserve.

GPs are always the first call for women suffering from menopause. Those women deserve clarity and conclusiveness from GPs, rather than, as often happens—I say this with respect—stagnation and short answers. “We’ll get you a blood test, then we’ll offer you some HRT, or you can just grin and bear it.” Those are the offers that are made, so it is of the utmost importance that we rectify the training process for GPs to include more than a passing module on the effects of menopause and its treatment. The side effects of menopause sometimes include osteoporosis, broken bones, or aches and pains. Those are the realities for ladies, and probably for my dear wife as well.

I made this point once before in another debate, but it is important to repeat it: women are unable to work for long periods of time without suffering from the menopause. Women over 40 are the fastest-growing demographic in the workforce. That is the group we are talking about—the group who need the help—so we look to the Minister for that help, and other Departments will need to provide it as well. It is estimated that some 900,000 women in the UK have left their jobs as a result of menopausal symptoms. That is an issue that has to be addressed, maybe not by this Minister, but certainly by the Minister who has direct responsibility for it.

My last point is that the mental health of women can be shattered by the remorseless effects of menopause. There are women who are not only unable to go to work, but who struggle to maintain any rudimentary sense of a social life, unable to see their friends, do their job or enjoy themselves. That is a crushing impediment to sustainable mental health, and it needs addressing. As a man, I am very happy to ask for what every lady in this Chamber has asked for, and what other men have asked for as well, because it is only right that it should happen. We look to the Minister for answers, and we hope that we will get them.

Baby Loss and Safe Staffing in Maternity Care

Jim Shannon Excerpts

Tuesday 25th October 2022 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Member for Hartlepool (Jill Mortimer) for setting the scene so very well and the hon. Member for Hexham (Guy Opperman) his contribution. It is always good to hear about personal experiences in speeches, as it shows us all what some people have gone through. My mother has had four miscarriages, while my sister has had two; Naomi, who works in my office, has had one. Although I cannot say that I have personally experienced miscarriage in a real sense, I understand it through the losses of my mother, my sister and my assistant. It is something that very much touches all our hearts.

My heart aches knowing that one in four pregnancies ends in miscarriage, one in 80 pregnancies is ectopic and 13 babies are stillborn each day. For some, those figures may be just stats, but, in reality, every one is a personal story. We have heard some of those stories today.

I have been contacted by countless organisations and constituents about maternity staffing and training. In 2021, the Government announced an investment of £95 million to increase staffing, while a subsequent £51 million is being made available until 2024. I was shocked, although not really surprised, to be told by the charity Sands that that is still not enough to ensure that services across the UK are safely staffed.

Three weeks ago, I had the opportunity to meet Karen Murray and Jayne Cardwell of the Royal College of Midwives and the South Eastern Health and Social Care Trust. I know that the Minister is not responsible for health in Northern Ireland, but I want to give that perspective to the debate, if I can. Midwives in Northern Ireland are experiencing the very same things as here on the mainland, as hon. Members present have spoken to. Karen Murray and Jayne Cardwell brought to light just how dire the situation is in Northern Ireland. We have witnessed recent reports of scandals in Morecambe Bay, where the deaths of 45 babies could have been prevented if adequate maternity care was provided. I stand here blessed and grateful that we have not experienced something similar in Northern Ireland. The representatives I met said that

“it is by the grace of God”

that we have not experienced similar scandals.

The Royal College of Midwives has issued a blueprint for Northern Ireland that paves the way for sustainable, efficient and safe maternity services for women in Northern Ireland. It is a blueprint that could be carried out across the whole UK. The RCM has made it clear that there must be an allocation of money to maternity services that is ringfenced for the full implementation of safety initiatives. There are serious systematic failings—the RCM’s words—that are putting the safety of mothers and newborns at risk. We need more midwives and more specialist bereavement care, especially having heard the stories from hon. Members today. Those are some of the things we need to look after. We also need better supervised neonatal units and consistent financial commitments from our Governments, both regionally and in Westminster, to deliver this.

Organisations such as Bliss, Sands and the RCM have made many recommendations on how we can improve the situation with our maternity services. First, the maternity strategy is in serious need of updating. We must see more midwives and those qualified in specialist care to ensure that even people in the most intricate circumstances are looked after. The Royal College of Midwives says its staff feel the pain of the people they work with; that came across clearly in the meetings I had with the organisation. All our healthcare professionals need better financial, emotional and mental health support as they recover from the devastating impact of the pandemic.

I urge the Minister to engage with our regional Minister, Robin Swann, to ensure that there is never again a repeat of the recent scandals and reports we have heard across the UK. Everyone involved in the political sphere wants to improve the situation, and we can all unite to ensure that our constituents are protected and safe through their maternity journey. Let today be the start of the journey for better maternity care.

[Philip Davies (in the Chair)]

Before we get to the Front Benchers, last but by no means least I call Richard Burgon.

Motor Neurone Disease

Jim Shannon Excerpts

Thursday 20th October 2022 Commons Chamber

[Jim Shannon (Strangford) (DUP)]

It is a real pleasure to speak in this debate. I commend the hon. Member for Northampton South (Andrew Lewer) for setting the scene so well. I also commend others for their contributions and look forward to those to come from Back Benchers, the shadow Minister and the Minister.

Most of us here will be aware of what MND is: a fatal, rapidly progressive disease that affects the brain and the spinal cord and attacks the nerves that control movement so that muscles no longer work, leaving the sufferer locked in a failing body unable to move, talk or, eventually, breathe, although their mind remains completely intact—a prisoner in their own body. It affects people from all communities, classes and cultures and it is equally devastating to them all. It is a death sentence for too many, killing a third of people within a year and more than half within two years of diagnosis. Six people per day are diagnosed with MND in the UK. It affects up to 5,000 adults in the UK at any one time and kills six people per day—just under 2,200 per year. Currently, it has no cure.

Others have referred to those they have known and to inspirational sportspeople. Back in 2010, before I came here, I was a member of Ards and North Down Borough Council. I had a good friend and colleague—an alderman; we came from different political parties, but worked together on so many things. I was elected here in the May, but met him—I am not going to mention his name—at an event at Portavogie in the September. I said, “You don’t look too well.” He said, “Jim, I’m not well.” When I asked him what was wrong, he told me that he had MND. I visited him as his health deteriorated. I watched an exuberant, energetic gentleman, who was very much aware of what was happening around him, go downhill rapidly. He lasted only slightly over a year. I also remember the impact on his family, who ended up selling the house, which had too many bad memories for his wife and children. They moved on. That is my personal knowledge of how the disease affects people.

I want to comment about Northern Ireland, which is not the Minister’s responsibility so I am not expecting an answer. I will give a perspective of how we do it back home—or perhaps, in this case, what do we not do, although we should.

People with MND in Northern Ireland have a worse standard of care and access to specialist help and support than those in any other part of the United Kingdom. There is a lack of specialists and multidisciplinary care for people with MND in Northern Ireland, where only one part-time specialist neurologist is available. They are available for only one day per month to help people with MND—my goodness! That inevitably leads to longer waiting times for diagnoses of MND and in turn to poorer outcomes and potentially shorter life expectancy post diagnosis. There is only one specialist MND nurse in Northern Ireland, and Northern Ireland is the only part of the UK that does not have an MND care co-ordinator. We fall badly short of what is needed.

The situation for carers in Northern Ireland, both paid and especially unpaid, is a matter of shame. Carers receive almost no support, but they are a vital part of the lives of those living with MND, particularly in light of the current lack of care provision within the NHS in Northern Ireland. For many reasons, including those outlined above, there has been no specialist research into MND in Northern Ireland. People living with MND in Northern Ireland should be offered full and equitable access to MND research.

I am ever mindful that health is devolved, but has the Minister contacted his counterpart in the Northern Ireland Executive to discuss a UK-wide MND taskforce? MND has been overlooked, and that must be reversed. Northern Ireland can gain and learn from what has been done in England, Scotland and Wales.

After months of dedicated campaigning, the United to End MND coalition of patients, charities and researchers won a huge victory in November 2021 with the news that the Government would invest £50 million over five years in targeted MND research. I thank the Minister, the UK Government and the Northern Ireland Executive, as this funding is welcome. The announcement was made by the then Prime Minister on 14 November 2021, and £50 million was the exact figure requested by the coalition’s submission to the 2021 spending review for the establishment of a virtual MND research institute to initiate a comprehensive five-year plan specifically for translational MND research to accelerate the discovery of treatments for this devastating disease. It is really good news that something like this is coming from the Government.

Since the announcement, the coalition has engaged with both the Department for Business, Energy and Industrial Strategy and the Department of Health and Social Care, and we understand that BEIS will provide 80% of the funds and DHSC will provide the remaining 20%. This is incredible news, and I ask to Minister to confirm it in his response.

Without the funding, the existing system will not support the infrastructure needed for close collaboration between five of our leading universities and 22 research centres. Without this ongoing close collaboration, game-changing progress cannot be realised. How can we better use the universities and that collaboration? Having full, reliable funding over five years, without the need to reapply repeatedly, will free scientists to conduct science, rather than making time-consuming grant applications, as the hon. Member for Berwickshire, Roxburgh and Selkirk (John Lamont) said. The funding will also support the retention of key staff, and cash will be released at pre-determined time points, according to the approved work plan.

The challenge posed by the existing system is that the Medical Research Council and the National Institute for Health and Care Research fund grants of up to £2 million at most, and many grants are for far less. The aim of a co-ordinated national approach is to avoid piecemeal efforts that break the united vision of a single co-ordinated UK team working to cure MND.

The Government’s “Life Sciences Vision,” which seeks to establish the UK’s position as a post-Brexit life sciences superpower, refers to building on the

“ways of working from COVID-19 to tackle future disease challenges”.

We learned a lot from how the Government responded to covid-19, and we can use that expertise to research cures and treatments for MND. One of the vision’s missions is:

“Improving translational capabilities in neurodegeneration”.

MND is the neurodegenerative disease that is most ready for translation. MND is a gateway disease to illnesses such as dementia.

We need to address the cost of living issues with a benefit uplift, increased support for unpaid carers and the provision of access to skilled social workers. These are all essential, and they all need ministerial direction. I look forward to hearing from the shadow Minister, who is a dear friend, and the Minister, who has the power to give that direction. People with MND are living in a prison, and we have the ability to open the door and let in some light. I believe we must do that by providing the help they are crying out for.

East Kent Maternity Services: Independent Investigation

Jim Shannon Excerpts

Thursday 20th October 2022 Commons Chamber

[Dr Johnson]

My hon. Friend will be aware that within HSIB the Government are establishing a new special health authority specifically for maternity investigations, with specialist expertise. This independent body will continue the work of HSIB from 2023. In the meantime, maternity investigations will continue without interruption until it is fully operational.

[Jim Shannon (Strangford) (DUP)]

First, I welcome the hon. Lady to her place. We are very pleased to have her expertise and knowledge in that role as Minister. This House will benefit from it. I would also like to express, on behalf of myself and my party, my sincere sympathies to all those who have lost loved ones. I think it is fair to say that we all have those families in our thoughts and prayers. Will the Minister outline what discussions have taken place with devolved health trusts in the devolved nations to share information and ensure UK-wide reform? It is clear that the pressures that led to this terrible scenario in Kent are ready to be replicated through the United Kingdom of Great Britain and Northern Ireland, as midwives battle with understaffed, unsupported and exhausted wards that are on the brink of life-and-death disasters. Through no fault of individuals, midwives will carry that all to their graves. I know the Minister is committed to making it better. How can we do that for all of this great United Kingdom of Great Britain and Northern Ireland?

[Dr Johnson]

It is, of course, important that information is shared across our great country, so that people in all areas of our nation get the best-quality care. Health is a devolved issue, but I will continue to work with Ministers from the devolved nations to ensure we share the lessons and learn from each other.

Edenfield Centre: Treatment of Patients

Jim Shannon Excerpts

Thursday 13th October 2022 Commons Chamber

[Will Quince]

We are absolutely fully committed to attracting, training and recruiting the mental health workforce of the future. Through our plans set out in “Implementing the Five Year Forward View for Mental Health” and “Stepping Forward to 2020/21: the mental health workforce plan for England”, we have expanded and diversified the types of roles available. The hon. Lady asks us for our plans. Our aim is an additional 27,000 mental health professionals in the workforce by 2023-24 to deliver the transformation of mental health services in England that we all want to see.

[Jim Shannon (Strangford) (DUP)]

I thank the Minister for his answers, and I welcome him to his place. Having seen a very similar issue with the treatment of vulnerable patients in Muckamore Abbey Hospital in Northern Ireland, it would appear that how we balance the safety of staff with the treatment of patients needs an overhaul, and that must be UK-wide. Will the Minister make contact with the devolved Administrations, in particular the Northern Ireland Assembly, to ensure that lessons learned can be lessons shared for the safety of patients, but also for staff who have to deal with these things throughout the whole of the United Kingdom of Great Britain and Northern Ireland?

[Will Quince]

The hon. Gentleman is absolutely right. There is no monopoly on best practice and where it does exist, we have to ensure it is shared. Where we identify the very poorest practice, we must ensure the lessons are learnt not just in England, but across our United Kingdom.

Liver Disease and Liver Cancer: Diagnosis

Jim Shannon Excerpts

Tuesday 11th October 2022 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Member for Rutherglen and Hamilton West (Margaret Ferrier) for raising this issue and for giving us all an opportunity to participate in the debate. I am my party’s spokesperson for health, and also a vice-chair of the all-party parliamentary group on liver disease and liver cancer, so it is good to be here to discuss how we can better improve our services for the diagnosis of liver disease and cancer.

There are over 100 types of liver disease and cancer. They impact some 2 million people across the United Kingdom, so it is of the utmost importance that our services are up to scratch to ensure quick and efficient diagnosis. The British Liver Trust has raised concerns about the difficulty of diagnosing liver disease, given that it can take some time for real symptoms to show. Perhaps the Minister would come back to us on that issue. I am very pleased to see the Minister in her place, which is well deserved, and we look forward to her response to all the issues raised by Members.

Many may wish to keep an eye out if they have been indulging in what are classed as the three main causes of liver disease: excessive alcohol consumption, undiagnosed hepatitis and potential obesity. The hon. Member for Rutherglen and Hamilton West set that out very clearly. Since the 1970s, liver disease has been on the increase, with a 400% increase in deaths. That cannot be ignored. I am one of those—probably one of many here—who have had a liver capacity test. It has also been said that there is a stark disparity between liver disease and diseases such as cancer and heart disease: figures show that deaths from those diseases have remained stable or decreased.

This is a nationwide issue, of course. As of 2019, one in five people in Northern Ireland—I always like to give a Northern Ireland perspective in these debates—who was suffering from liver disease was completely unaware of the fact. It is staggering that that could be the case: that is 20% of those people. In addition, since 2011, there has been a 28% increase in hospital admissions due to liver diseases and cancer.

Unlike some diseases, liver disease is something that we have real control over if we are on top of it and looking out for the potential symptoms. We must become knowledgeable as to how we prevent liver disease to start with: keeping an eye on our consumption of sugar, fat and alcohol can be instrumental in preventing some 90% of liver diseases, so there are a lot of things we can do ourselves. Before covid, Parliament’s Health and Social Care Committee released a publication that alerted people to the concern that exists about alcohol-related diseases and deaths—about a potential spike in deaths of young people due to alcohol or needle-induced hepatitis, which are extremely preventable. The Government have a role to play in schools and at universities to ensure that young people who may be experimenting with alcohol are fully aware of its long-term impacts.

There are things we can do to prevent liver disease, and to diagnose it earlier. Along with personal awareness, more must be done to gather as much information as possible through research. As with all diseases, the more funding we are able to pump into researching liver disease, the more we can investigate, learn and prevent in the future. That is ultimately the role of Governments, not only here in Westminster but across all our devolved Assemblies, whether in Wales, Scotland or Northern Ireland. They are responsible for funding our wonderful charities to enable them to commission and implement great liver disease and cancer services for all our constituents. It is important that we as elected representatives align ourselves very closely with liver disease charities. Those charities do incredible work, carrying out investigations and tests to find ways of making people’s lives better and, ultimately, to try to do away with liver disease.

We are on the right path, but there is no doubt that there is still work to be done on this issue. When we compare liver disease with other diseases, such as heart diseases and cancers, we can see the success stories in some of those areas, but we can make today’s debate an important step forward in curing liver disease. I hope that today’s turnout has encouraged the Minister to come back with something good when she responds; I also look forward to the contribution of the shadow Minister, the hon. Member for Enfield North (Feryal Clark). Today is a true representation of our goal to do better, and whether we are in Wales, in Scotland, in Northern Ireland or in England, we can do it together.

Healthy Start Scheme

Jim Shannon Excerpts

Wednesday 7th September 2022 Westminster Hall

[Kate Green]

It is a pleasure to respond to my hon. Friend’s question. He has done excellent work as part of his “Right to Food” campaign, and he raises a number of issues, including take-up, the generosity of the scheme and the importance of adequate nutrition, that I will come back to in my speech.

My hon. Friend will know that child food poverty continues to stunt children’s development as they grow up, and that overstretched family budgets, which mean that mothers go without in order to feed their children, are harmful to maternal health, increase maternal stress and are especially dangerous if women are breastfeeding—or, indeed, may prevent them from doing so. The Minister will share our concern that a new YouGov survey commissioned by Kellogg’s, which will be released next week—I appreciate that she has not had a chance to see it yet—has found that 66% of low-income families say that accessing Government benefits is complicated, and 53% are not confident that they are aware of all the benefits available to them. At the same time, 80% of parents on low incomes say that the rising cost of goods has impacted their ability to pay for essential items, and more than one in seven says that their children are worried about the situation.

[Jim Shannon (Strangford) (DUP)]

This is an incredibly important subject. I commend the hon. Lady on the way that she has introduced it. We are moving into what are perceived to be difficult times. Some of the figures for Northern Ireland show that poverty will probably double, which shows the importance of the scheme. Does she agree that the Government and the Minister must look once more at eligibility for the scheme, as working people who are already on the breadline will increasingly find themselves unable to support their family? If the scheme is not able to provide for a family as it did in years gone by, there will be a need to change the money available and the system.

[Kate Green]

The hon. Member draws attention to a very important point about the pressures faced by families—and not just those in which people are out of work, but those where they are working on low incomes. Healthy Start and other forms of social support can play an important part in enabling families to raise their children.

The removal some months ago of the £20 uplift in universal credit and the cost of living crisis will exacerbate the situation for families, as soaring energy, food and fuel bills lead to a further increase in maternal and child poverty. Last month, the Institute for Fiscal Studies reported that the cost of living is expected to be 11.3% higher in financial year 2022-23 than last year; inflation is expected to peak in the last quarter of this year at 13.1%. The impact will fall disproportionately on low-income families. The TUC has suggested that pay rises could fall behind inflation by almost 8% later this year, marking the biggest fall in real wages for 100 years.

The situation is especially acute for families with new babies and very young children. Maternity Action points out that the value of the basic rate of maternity, paternity and parental pay, relative to women’s median earnings, has declined from 42% in 2012 to 37% in April 2022. New mothers are expected to survive for up to 33 weeks on not much more than a third of women’s average earnings. That, of course, is at a time when they face the additional costs associated with parenthood.

Against that backdrop, Healthy Start will be more important than ever, but as my hon. Friend the Member for Liverpool, West Derby (Ian Byrne) and the hon. Member for Strangford (Jim Shannon) have pointed out, many mothers on low incomes will not even be eligible for support. To qualify, they have to be on an income of less than £408 per month, so a new mum receiving universal credit plus statutory maternity pay would not qualify for support.

Alongside concerns about the scale of support needed are concerns about the take-up of Healthy Start, as we have heard. In a written answer to the Bishop of Gloucester on 1 August, Lord Kamall stated that up-to-date figures are not held centrally. He promised that work to compile the data was taking place across Government, and that the data would be published as soon as possible, but I find it astonishing that the Government do not have those figures now.

As we have heard, there is widespread concern about low take-up. In Greater Manchester, the combined authority estimates that around 40%, or approximately £5 million-worth, of vouchers go unclaimed. That is borne out by Maternity Action’s survey; fewer than 1% of respondents on low incomes reported receiving Healthy Start, the Sure Start maternity grant, or the Scottish Best Start grant and food vouchers, yet more than half of those very same mothers reported difficulties in buying essentials at least some of the time, and 2% reported using food banks. It is pretty clear that the benefits are not proving effective at reaching all those most in need.

Concerns about take-up are compounded by the suspicion that digitalisation has not improved things; indeed, it may have made them worse. I am not at all against digitalisation—indeed, the National Institute for Health and Care Excellence recommended it back in 2014. There are a number of potential benefits to introducing a payment card system: cards can be used anywhere in the UK; unspent sums can be rolled over from week to week; administration should be simpler and potentially cheaper for retailers; and data collected from card use could be used to improve the supply chain and for system monitoring.

However, it appears that when prepaid cards were finally introduced last year—applications are made by telephone or online—the process had been piloted only on those who already had smartphones and monthly price plans. That may explain some of the problems being experienced, which may be inhibiting take-up. First, the issue of the cost of calls—55p a minute for those on a pay-as-you-go mobile—is compounded by long waiting times to get through on the helpline. Applicants have reported having to wait up to an hour to speak to an adviser, leading to call costs of as much as £33.

One reason for the delay in getting through seems to be that the same line is used for both inquiries and application. A complicated query can lead to long waits for callers down the queue. Meanwhile, those applying online may face data costs. Claimants also report that no reason is given if their application is rejected. They need to reapply if they think the decision is incorrect but, unhelpfully, they will not know what they got wrong. Support takes effect from the date that an application is approved, but there is no backdating for those who had to reapply.

The expectation that a card system would mean improved coverage has not always materialised. The prepaid cards can be used at any outlet that accepts Mastercard. Unfortunately, that means that some outlets that previously accepted the paper vouchers are no longer able to accept the prepaid cards. They include independent local stores, which often supply culturally appropriate foods to minority and marginalised communities, market stalls, and those making direct sales from the farm gate, which is a particular issue in relation to rural poverty. Even some well-known high street names that previously accepted the paper vouchers had the wrong Mastercard merchant code and could not accept the cards, as food retailing is not their main business. I am not sure whether that issue has been resolved; perhaps the Minister could confirm that.

Finally and distressingly, while we may have expected that the use of a prepayment card would reduce stigma, Feeding Britain points to worrying research from Northumbria University; it shows that shoppers need to split their trolley of purchases at the check-out; cards are frequently declined at the check-out, causing anxiety, embarrassment and humiliation; and shop staff are unfamiliar with the new prepaid cards, unable to help or offer conflicting advice. We hope that those are teething problems and will reduce as stores become familiar with the cards, but it is troubling that the new scheme should have compounded poverty with stigma in this way.

Having said all that, I repeat my support for the Healthy Start scheme, but it could be so much more effective at reducing poverty and improving maternal and child nutrition if changes were made. I will conclude with some questions and suggestions for the Minister. First, sort out the helpline. I cannot understand the logic of a service that is intended to support low-income households imposing call charges that exacerbate family poverty. Healthy Start is not alone in that. It is high time that the Government carried out a comprehensive review of the cost of calls to helplines across Government that are specifically designed to enable people on low incomes to reach the services and benefits intended to help them, including Healthy Start. While I am on the subject, a review is needed of the data charges when accessing services online.

Next, deal with the delays—if necessary, by increasing helpline staff numbers to reduce waiting times. Will the Minister review the routing of calls depending on their nature, so that complex queries do not create bottlenecks that lead to long waits for other callers?

As I have said, eligibility for Healthy Start starts from the 10th week of pregnancy. In practice, however, the support takes effect from the date of a successful application, so an expectant or new mother who has only belatedly discovered that she is entitled to support will lose out. Does the Minister agree that support should take place from the 10th week of pregnancy in all cases, and be backdated if necessary? That would help those whose initial applications are rejected and who successfully reapply. Will the Minister look at what can be done to ensure that applicants are clear about the reason for refusal if their application is rejected?

As I have said, Healthy Start is available until a child is four, which leaves a gap of several months before children start school and may become eligible for free school meals. Will the Minister consider extending coverage until a child starts school? Will she look at the value of Healthy Start, at extending it further up the income scale—many claimants in receipt of universal credit are ineligible—and at automatic uprating, so that the value of the benefit keeps pace with inflation? The Co-operative Group topped up the value of the vouchers as families struggled during the pandemic. With the cost of living now rising so sharply, there is a need for the Government to act urgently.

Crucially, will the Minister urgently launch a vigorous and comprehensive national take-up campaign, working with local and regional government; retailers and industry bodies such as the Co-op and the Association of Convenience Stores, which work hard to promote the scheme among their members; charities, foodbanks and pantries such as the Bread and Butter Thing and Community Fridge; the advice sector; schools and family hubs; registrars in NHS settings; and organisations that provide support to new mums and pregnant women? There is good practice on which to build—for example, Kellogg’s is partnering with the Greater Manchester Poverty Action Group to run a pilot in four schools and colleges that gives parents access to a financial inclusion officer, who will be available in informal settings such as school breakfast clubs in order to offer parents advice on how to access benefits, including Healthy Start.

Finally, a more accessible application process would also help take-up, so will the Minister work with the Department for Work and Pensions to introduce a tick box as part of the universal credit application process, and with local authorities to introduce a similar tick box on applications for council tax support? Better still would be to introduce a system of automatic enrolment, as Feeding Britain has proposed—perhaps with the option to opt out—to replace the system that we have now, which requires parents to opt in. Is that something the Minister would consider?

I know the Minister takes the health and welfare of pregnant women and children very seriously. Healthy Start has an important role to play, and I hope she will find the suggestions that I have made this morning helpful. I look forward to her reply, and to hearing how she intends to take action to ensure the scheme does all that it has the potential to do to help children to thrive.