Osteoporosis

Jim Shannon Excerpts

Thursday 26th October 2023 Commons Chamber

[Judith Cummins]

I thank the hon. Gentleman for that important intervention. The condition predominantly affects women, but it does affect men as well. Small changes to lifestyle, as well as detection and prevention, are very, very important.

Osteoporosis often develops during menopause, when a decrease in oestrogen can lead to a 20% reduction in bone density. A loss of bone density affects people of all sexes as they age, but women lose more bone density more rapidly than men.

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Lady for securing the debate. I referred to this point earlier in the debate on menopause, but my staff and I deal every day of the week with benefit issues relating to osteoporosis. It is clear that the understanding and capacity that maybe should be there in the health sector is not there. Mindful that the Minister is not responsible for the Department for Work and Pensions, does she think that within the Department there should be a better understanding when assessing those with osteoporosis to ensure they can gain the benefits in the system that the Government have set aside and have a better quality of life?

[Judith Cummins]

I thank the hon. Gentleman for that important intervention. Osteoporosis suffers from some mystery, and any light that we shine on the condition is welcome. It is entirely possible for someone with osteoporosis to work and have a very full life, given detection and treatment.

Fracture liaison services are integral to that. They are essential because throughout our lives our bones continuously renew themselves in a process called bone turnover. With osteoporosis, bone turnover becomes out of balance. Bones lose strength and become more fragile, bringing an increased risk of fractured bones time and time again. The FLS can identify osteoporosis at the first fracture through methods including DEXA scanning, and offer treatment that can reduce the risk of further fractures. The FLS also systematically monitors patients after an osteoporosis diagnosis to ensure they get the best out of their treatment plan. With the FLS, patients who would otherwise face a fracture or multiple fractures can continue to lead healthy and fulfilling lives.

With osteoporosis designated as the fourth most consequential health condition when measured in terms of disability and premature death, we have to question the Government’s current record on assessment, treatment and prevention. There is a postcode lottery for access to these vital life enhancing and lifesaving services, with only 57% of the eligible population in England currently having access to the FLS. What we desperately need is a central mandate requiring integrated care boards to invest in established FLS for everyone.

Let me stress not only the moral imperative of acting on this issue, but the clear financial argument for establishing 100% FLS coverage in England. One million acute hospital bed days in England alone are taken up by hip fracture patients. Research shows that FLSs reduce the refracture risk by up to 40%. Applying that to the national picture, we find that a staggering 750,000 bed days would be freed up over five years, saving the NHS £665 million. This would have a significant and positive impact on the social care system. For every pound invested in FLS, the return is more than threefold. With the NHS in crisis, the Government must be bold and recognise the value of services such as FLS.

The future of the NHS lies in prevention, but this argument extends beyond the NHS. Every year, 670,000 people of working age suffer from fractures due to osteoporosis, and a third of those will leave the workplace permanently owing to the impact of chronic pain. We also know that every year 2.1 million sick days are taken in England as a result of disabilities caused by fractures. Any Government would surely understand how consequential this is for our economy. A new analysis provided for the Treasury shows that universal access to FLS can prevent up to 750,000 sick days every year, and that is why trade unions, the TUC, the Federation of Small Businesses and other business groups have joined the campaign to extend FLS access to everyone aged over 50.

It is clear that the Chancellor cannot succeed in addressing labour shortages without taking decisive action on FLS. To provide this vital support—to provide 100% FLS coverage in the UK—would cost an estimated £27 million per annum, which is less than 2% of the UK’s current expenditure on hip fractures. Preventive osteoporosis treatment not only presents a sound financial case for the NHS, but presents a strong business case by ensuring that so many women can continue to work. Improved osteoporosis treatment does not just mean that people can work for longer; it means—perhaps much more important—that those living with osteoporosis can enjoy a higher quality of life beyond their work.

It is time to do away with the stigma because, with people in the UK living to an older age than ever before, 50 has become the new 40. Osteoporosis is no longer an old person’s condition. We have allowed it to become accepted as a natural part of ageing, but it does not have to be. In this country, we have a choice: to diagnose and treat it, or to simply continue to ignore it. This is an opportunity to address old prejudices. Osteoporosis is one of many conditions, mostly experienced by women, that have historically been swept under the carpet. In the 19th century, during the period of its earliest identification, studies crudely described the condition in terms of women tripping over “their long skirts”. Even today, people refer to osteoporosis in crude and demeaning terms such as “a dowager’s hump”. Raising awareness of this long-overlooked condition is essential, and I am grateful for the opportunity provided by today’s debate to further demystify osteoporosis as a health issue which affects so many people across this country.

After centuries of inattention in the world of medicine, we now have revolutionary new technologies and systems such as DEXA scanning and FLS. These services have the potential to transform the lives of so many women throughout the country—women who have so much to offer, who should not be left undiagnosed, but whose quality of life is left literally to crumble along with their bones; women who are left to suffer in pain when treatment can and should be made available. The decision to provide full FLS coverage is not only fiscally responsible and right, but it would be an historical leap forward in terms of women’s healthcare. Today, two thirds of those who need anti-osteoporosis medication are left untreated. That is roughly 90,000 people, every year, missing out on necessary treatment due to Government inaction. This is life-changing medicine. As many people die from osteoporosis-related issues as die from lung cancer or diabetes, so FLS and fracture prevention need to be part of the mandated NHS core contract. We must establish new guidelines to support the establishment of FLS across England.

In August, the Minister publicly stated that the Government would make an announcement on establishing more fracture liaison services by the end of this year. In September, the Minister in the other place said that the autumn statement would include

“a package of prioritised measures to expand the provision of fracture liaison services and improve their current quality.”—[Official Report, House of Lords, 14 September 2023; Vol. 832, c. GC241.]

I understand that, since then, there has been a walking back of this commitment. On behalf of the 90,000 people missing out on life-saving, life-changing medication, I yet again ask the Government to hold their nerve and act quickly.

Now is the time for this Government to turn their back on outdated attitudes towards osteoporosis, now is the time to protect women whose quality of life would otherwise be left to crumble along with their bones, and now is the time to commit to 100% FLS coverage across England. By ensuring that every person in the UK has access to fracture liaison services, we have the power to make this vision of life-saving early intervention and prevention a reality.

World Arthritis Day

Jim Shannon Excerpts

Wednesday 25th October 2023 Westminster Hall

[Tom Randall (Gedling) (Con)]

I beg to move,

That this House has considered World Arthritis Day.

It is a pleasure to serve under your chairmanship, Ms McDonagh. This House was in recess on 12 October, but that date has been celebrated—if that is the right word—as World Arthritis Day since it was established by Arthritis and Rheumatism International in 1996. Its aim is to raise awareness across the world of the existence and impact of rheumatic and musculoskeletal diseases, and to educate people about symptoms, preventive measures and treatment options. I thought it might be helpful to bring this debate to the Chamber today—the closest date to World Arthritis Day that we could arrange—to raise awareness, to highlight the extent and impact of arthritis and musculoskeletal conditions in Britain today and to continue the debate on what we can do to mitigate the impact of arthritis.

What is arthritis? Arthritis refers to painful, stiff or restricted joints, which are common symptoms in conditions that cause joint damage or inflammation. They include osteoarthritis, which happens when the body can no longer maintain and repair one or more joints; autoimmune inflammatory arthritis conditions, including axial spondyloarthitis; crystal arthritis such as gout; or symptoms of inflammatory connective tissue diseases, such as lupus. Arthritis is used as an umbrella term for a range of conditions, and that is how I will use it in this debate, although there are certain issues specific to particular conditions that I will mention later.

The subject is worthy of debate for three reasons: first, to recognise the inherent issues in living with arthritis, and how widespread it is; secondly, to highlight the wait for diagnosis and treatment; and thirdly, to understand the economic costs of not dealing with musculoskeletal conditions effectively. We might think that arthritis only affects old ladies, but it is more widespread than that. More than 10 million people in the UK—one in six of our constituents—have arthritis. One in six of our constituents is in pain and experiences fatigue and often restricted mobility.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Gentleman on bringing forward this debate. In Northern Ireland, where we have a population of 1.95 million, there are 525,000 people living with arthritis or another musculoskeletal condition. That gives some perspective— it is more than one in four. The scale of the issue is massive.

Does the hon. Gentleman agree that for those in the early stages, help in dealing with pain and strengthening the muscles can prevent further untimely deterioration? We should ensure that people stop classifying arthritis as an old person’s disease, so we can allow younger people to determine what they have and how to manage the progression that the hon. Gentleman wishes to achieve.

[Tom Randall]

The hon. Gentleman is absolutely right. When we have debated this subject in the past, he has raised the issue of arthritis in Northern Ireland; I am so pleased to see him raising it again. He is right in the perspective that he takes on the breadth of the issue, which affects a wide variety of people. I will come on to that point shortly.

One of my Gedling constituents puts it this way:

“Living with arthritis changes you and turns your world upside down. Things you took for granted become obstacles and daily challenges to be overcome. On a good day, you might not look like you’re living with a chronic condition but it never goes away. It’s hard to plan ahead because you don’t know if you’ll be up to going out or meeting up. Arthritis doesn’t only affect the person with the condition but their family too. I have watched Rheumatoid arthritis rob my mum of a life and now I have it too. It makes me frightened for my daughter’s future.”

Early diagnosis and prompt treatment can improve the futures of people living with arthritis and musculo- skeletal conditions, but not always. In the case of axial spondyloarthritis, in which I declare an interest as chair of the all-party parliamentary group on axial spondyloarthritis, a key challenge remains timely diagnosis. In this country, the condition currently takes an average of eight and a half years to diagnose, which puts us behind most comparable nations in Europe.

The latest report of the national early inflammatory arthritis audit, which is run by the British Society for Rheumatology, found that patients are experiencing diagnostic and treatment delays, with 44% of patients still not referred within the target of three working days and 48% of patients experiencing symptoms for longer than six months prior to referral. Although the average time to treatment has improved in England, having been reduced by three days, delays are an average of 12 days higher than the quality standard of 42 days.

The impact of arthritis is ultimately a human story, but the economic cost is also worth mentioning. According to the Office for National Statistics, 23.3 million working days were lost in 2021 due to musculoskeletal conditions. I have thought about how to put that figure in a way that politicians and politicos can understand. Think back to the winter of discontent in 1979, when 29 million working days were lost due to strike action. That was a politically pivotal year, which was notorious for how many working days were lost, and we are facing the equivalent of 80% of that figure—not just in one year but every year because of musculoskeletal conditions.

People with arthritis are 20% less likely to be in work than people without arthritis. Twelve per cent of sickness absence in the NHS between September 2021 and August 2022 was due to back problems and other MSK conditions. The National Axial Spondyloarthritis Society estimates that

“A patient aged 26 who waits 8.5 years for a diagnosis is likely to lose around £187,000”,

the majority of which derives from a loss of productivity due to reduced employment. The average patient also incurs costs of around £61,000 in out-of-pocket expenses while waiting for a diagnosis. That includes the cost of medication, travelling to appointments and private healthcare appointments, including visits to chiropractors.

I first praise the Government for making musculoskeletal conditions part of the major conditions strategy. Making MSK one of the six major conditions signals the importance of this issue, and I believe that it demonstrates that the Government are serious about tackling it. I hope that it will be understood that there are a range of measures that can be taken to improve matters. The Government have made reducing waiting lists one of their top priorities to improve the lives of those with arthritis and musculoskeletal conditions, including those waiting for joint replacement surgery, but I would welcome clarification that it will remain a key Government priority and clarity on how that will remain the case in the face of likely future winter pressures.

According to the British Society for Rheumatology, growing the rheumatology workforce would reduce the health and societal costs of newly diagnosed rheumatoid arthritis by £50 million, so I welcome clarification from the Minister on plans to grow the rheumatology workforce.

Everyone recognises the valuable role that primary care can play. Raised public awareness can help to encourage early presentation in primary care, but there is also work to be done to help GPs and other healthcare professionals to recognise conditions. I spoke earlier of the delay to the diagnosis of axial spondyloarthritis. Fifty-six per cent. of that delay time occurs in primary care, with GPs often failing to identify the symptoms of axial spondyloarthritis and thinking that the patient may have mechanical back pain or back pain associated with injury. That can lead to repeated primary care visits and causes patients to be bounced around in the system, placing further burdens on the already stretched system. I welcome any opportunity to follow up with the Minister separately on that point, particularly on what can be done to improve public and primary care awareness of these conditions.

World arthritis day only comes once a year, but for those living with arthritis and musculoskeletal conditions it is a constant issue. While they might dream of a world free of pain and discomfort, that is not yet a reality. I am grateful for the opportunity to raise this issue on the Floor of the House today and I look forward to hearing further contributions on how we might make that the case.

Future of the NHS

Jim Shannon Excerpts

Tuesday 24th October 2023 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

First of all, I thank the hon. Member for Wirral West (Margaret Greenwood) for leading this debate and for setting the scene so very well. It is great to have such debates to remind us of the importance of our NHS to society across the United Kingdom as a whole. This really gives us a wee chance to say thank you. I strongly concur with the comments of others, and as health spokesperson for my party, these issues mean so much to me. It is great to be here to give all our NHS staff across the United Kingdom of Great Britain and Northern Ireland the recognition that they deserve. I thank them.

I commend the NHS staff who work day in, day out to provide for local people. It is fair to say that we have had a tough four years in terms of healthcare, with the pandemic having a devastating impact on day-to-day treatment. More recently, the impacts of covid are ongoing in terms of delays and waiting lists. We will never be able to truly understand the feeling of working in that environment, as Members were able to partake in debates from home. Recognising the sacrifices that our NHS workers made at times, which were unknown and dangerous, is an important reminder of the covid pandemic.

[Carla Lockhart (Upper Bann) (DUP)]

My hon. Friend is making a powerful contribution. He will know all too well that in Northern Ireland our healthcare workers and nurses are the very backbone of our NHS. Does he agree that it is time for the Government to step up and award our healthcare workers and nurses with the pay they deserve, and to stop hiding behind the cloak of there being no Stormont? We know that if Stormont was back up and running in the morning there is not the money to do it. Will he encourage the Minister to take that back to the Government?

[Jim Shannon]

I wholeheartedly agree with my hon. Friend and will go on to comment on that shortly. Given the circumstances of our NHS right now, on paper the future does not seem too bright. We have people waiting years for surgery and consulting appointments, people struggling to get appointments with their GPs and, in some cases, people waiting for 12 hours to be seen by a doctor at A&E.

However, we will always remain hopeful for the future of the NHS because of the people who work in it and who truly make it what it is: those who work the extra hour, in many cases without pay, after their shift ends to ensure everything is up to date; those who come into their work on their days off due to short staffing; and those who do not have lunch breaks either, as they are too run off their feet. They are the NHS staff who I know, and they are the NHS staff that my words speak to.

The key to fixing those issues lies within this very building. It is for our Government to make the decision to fund the NHS properly. I have constituents, friends and family members who contact me all the time about the condition of the NHS, especially in terms of funding. My hon. Friend the Member for Upper Bann (Carla Lockhart) is right to make that comment on behalf of the doctors, nurses and NHS staff who do so much.

Only this time last year I went to the picket line in Newtownards, one of the towns in my constituency, as the hon. Member for Wirral West said she did in her introduction to the debate. I joined the picket line because I felt that their request for pay was right, and that we should support them to the utmost of our ability. I hoped that would be the case—again, I look to the Minister for that. It is important that those issues are relayed to parliamentarians so that we can get the full scope of just how much people are struggling with the current rate of pay.

With sufficient funding and recognition of the issues, we can improve and build on our NHS. If we reflect on the NHS from 1948 to now, the enhancements are incredible. Medical technology is always being improved and new medicines are being discovered. Queen’s University Belfast is key to that, through the partnerships it has with business. We are finding more efficient ways of diagnosing diseases. As we look ahead to the next decade, we can expect to see more of those medical advancements as technology is always improving. It is incredible to see how far we have come. This week, Queen’s University Belfast has come forward with a new prostate cancer centre in Northern Ireland, which will be to the fore of finding treatments and the cure for that disease.

The next generations of nurses and doctors are going to feel the impact of our decisions today, so let us make the right ones, right now. We must build bridges and remind ourselves of the compassion that the NHS provides. We have a duty to deliver for the people we represent right across this great nation. They are telling us that currently things are just not good enough. I strongly encourage a regional discussion on the improvement of funding for the NHS so that no nation is left behind, and that, more importantly, all the NHS staff of the United Kingdom and Northern Ireland get paid suitable wages to help them make ends meet. We must ensure that the services are up to scratch to allow them to do their jobs to the best of their ability, as they all wish to do. We wish to support them in that.

[Mark Pritchard (in the Chair)]

We move on to the Front Benchers, who have 10 minutes each.

Childhood Cancer Outcomes

Jim Shannon Excerpts

Tuesday 17th October 2023 Commons Chamber

[Mark Tami (Alyn and Deeside) (Lab)]

rose—

[Jim Shannon (Strangford) (DUP)]

rose—

[Mrs Lewell-Buck]

I will give way to my right hon. Friend first.

[Mrs Lewell-Buck]

I thank my right hon. Friend. I know he has spoken movingly before in this Chamber about his son Max. He is right that, for those who are lucky enough to recover from cancer, there is always an after-effect; it remains with them for life and there should be more support. I give way to my other hon. Friend.

[Jim Shannon]

I commend the hon. Lady on bringing this debate forward. Her constituents should be very proud of their MP and how she has illustrated and put forward the case on behalf of one of her constituents. She has referred to others having big hearts, but I think she has a heart the size of an elephant, if that is possible.

Estimates suggest that around 75% of children diagnosed with cancer survive. However, that statistic has not seen an increase in many years. Does the hon. Lady agree that the 25% who do not survive must never be accepted as a statistic, but must be fought for with more funding and greater research resources, exactly as the right hon. Member for Alyn and Deeside (Mark Tami) has said, and that those must be put in place as a matter of form and not just granted for one or two years? I know that the Minister will respond in a positive fashion, and I commend the hon. Lady on what she is doing.

[Mrs Lewell-Buck]

I thank the hon. Gentleman for that very kind intervention. He has pre-empted what I will talk about later in my speech.

The Under-Secretary of State for Health and Social Care, the hon. Member for Lewes (Maria Caulfield), in responding to the debate last year, said that GPs had access to training and that National Institute for Health and Care Excellence

“guidelines are trying to support GPs”.—[Official Report, 26 April 2022; Vol. 712, c. 656.]

However, having access to training is not the same as mandated training, and NICE guidelines are for all cancers. It is widely known that many signs and symptoms of childhood cancer are the same as those for many common childhood illnesses, and that the types of cancer diagnosed in children are different from those seen in adults. In short, those guidelines are not enough.

The Under-Secretary of State also said that, despite some progress in treatment for childhood cancers, for

“conditions, such as rhabdomyosarcoma, that is not yet the case. Research is crucial to how we deal with it in the long term.”—[Official Report, 26 April 2022; Vol. 712, c. 658.]

Yet no breakdown is available for how much funding is directly linked to childhood cancer research, let alone RMS. What we do know is that funding for research of all cancers has dropped from £132 million in 2018-19 to £101 million in 2021-22, and that Great Ormond Street hospital has found that, on average, only 2p of every £1 spent each year on cancer research goes towards dedicated research projects for childhood cancers.

So here we are, over a year later, and it appears that nothing has improved. The Government’s change in approach to their cancer plan has not been welcome either. In February 2022, the Government launched their call for evidence for a standalone 10-year cancer plan for England, which was intended to be a new vision for how we will lead the world in cancer care. Yet in January this year, they announced that cancer would be incorporated into a new major conditions strategy, effectively scrapping the dedicated 10-year cancer plan. As Cancer Research UK said:

“by bundling in cancer alongside other conditions via a short-term strategy, ministers will fail to give cancer the due care and attention it requires… Cancer isn’t a single disease…in medicine it’s one of the hardest problems to solve and scientific discovery takes time… Ultimately, beating cancer requires a long-term approach.”

The Children’s Cancer and Leukaemia Group and Young Lives vs Cancer rightly note that this strategy will not give sufficient attention to children with cancer, and are asking the Government to commit to a children and young people’s 10-year cancer plan addressing diagnosis, treatment, patient experience, research, psychosocial support and living beyond cancer. The Royal College of Radiologists, which represents specialist paediatric radiologists and clinical oncologists, has said that after years of under-investment, the workforce is stretched and shortages are causing backlog and delay.

Access to paediatric radiologists already depends on postcode. In the north-east, there are 0.2 consultants per 100,000 people, compared with 0.7 per 100,000 in London. It takes seven years to train in this specialty, and as a percentage of specialists are due to retire, I am not sure that the Government’s workforce plan will sufficiently address the shortfall in those paediatric specialties. International comparisons show that the countries with the biggest improvements in cancer survival are those with long-term, adequately funded cancer plans. Every single parent who has lived in this painful cancer bubble knows what works, too: proper training, early diagnosis, research and access to treatment.

--- Later in debate ---

[Will Quince]

I am very happy to take both those questions. First, in relation to childhood cancer research specifically, my officials in the Department are working really closely with the National Institute for Health and Care Research to set up an expert roundtable on childhood cancer research. Many trials will be applicable to both adults and children, but by their nature, some will need to be childhood cancer-specific. I welcome that important initiative, which is designed to encourage more research into cancers affecting children.

The Government do not, in effect, commission research directly. Bids are made to NIHR; around £1 billion a year is spent directly on research through NIHR, but it is reliant on those bids. That is why it is so important that we get more bids for research into childhood cancer coming forward.

[Jim Shannon]

I thank the Minister for his response and also for his clear understanding of the issue. We appreciate his words. On Saturday past, we had our party conference. There were a number of stalls, including for a cancer charity. It has a charter, and at the top of that was a target that 70% of those who have cancer will survive and heal. Can the Minister indicate whether he and his Department have the same ambition to secure 70% of people with cancer surviving and being cured, especially children?

[Will Quince]

Where I very much agree with my hon. Friend is that research is so much at the heart of this matter. The hon. Member for South Shields asked specifically how much funding is going directly into childhood cancer research, and my understanding is that over the past five years, the National Institute for Health and Care Research specifically has funded 38 projects relating to childhood cancers and has spent just under £14 million on research specifically into childhood cancers. She is absolutely right that children’s cancer risk factors are not very well understood, as this group of cancers is rare and diverse—I think it makes up around 1% of all cancers. That is why the expert roundtable on childhood cancer research is so important, and I will continue to consider with colleagues across the House what more we can do on this important matter to get more bids for funding specifically for research into childhood cancers to come forward.

A handful of months ago, the Government published the NHS long-term workforce plan. Although it does not go into specific detail on speciality or cancer services, we are working closely with cancer charities and others to determine what the requirement would be going forward. To ensure that we get it right, I would be happy to meet the hon. Lady and any others with an interest in this area to feed into the team looking at implementation of the NHS long-term workforce plan.

I again thank the hon. Lady for tabling this vital debate, and I thank all Members who have contributed today. Families who have been affected by childhood cancer have a right to know that the Government and everyone across this House stand with them. I assure the House that improving childhood cancer outcomes is a top priority for this Government and for me personally. I will continue to work with the NHS to ensure faster diagnosis, further and broader research and greater access to groundbreaking treatment. I assure you, Mr Deputy Speaker, and the House that we will leave no stone unturned in our mission to beat cancer.

Question put and agreed to.

Oral Answers to Questions

Jim Shannon Excerpts

Tuesday 17th October 2023 Commons Chamber

[Neil O’Brien]

I pay tribute to my hon. Friend for all his work on this important issue. We will assess all the evidence and reply before the end of the year. Opt-out testing is not the only thing we are doing to drive down HIV transmission. We have had a 40% rise in the number of people getting pre-exposure prophylaxis, and we have increased the number of people testing, with 20,000 free testing kits handed out this year. We are doing everything we can to meet that visionary goal to stop HIV transmission in this country.

[Jim Shannon (Strangford) (DUP)]

I thank the Minister for his answer to the question from the hon. Member for Darlington (Peter Gibson). It is clear that today, HIV is not the death sentence that it once was, because of the progress of medication and healthcare in prolonging life and improving quality of life. In Northern Ireland we are proactive, as the Minister will know, on PrEP and young people. We are doing progressive things through the Department of Health, Social Services and Public Safety in the Northern Ireland Assembly. Has the Minister had the opportunity to discuss with the Northern Ireland Assembly and the Health Department how we can work better together? I always say we are better together in every case.

[Neil O’Brien]

The hon. Gentleman is completely correct. He has been a fantastic champion on this issue. The UK is leading the world on this issue, hitting the UN’s 95-95-95 goals, driving down transmission and reducing stigma. People increasingly realise that as well as suppressing the virus, the treatment makes it impossible to transmit, transforming the lives of people with HIV.

Fibrodysplasia Ossificans Progressiva

Jim Shannon Excerpts

Thursday 7th September 2023 Commons Chamber

[Jim Shannon (Strangford) (DUP)]

It is a pleasure to follow the right hon. Member for Hemel Hempstead (Sir Mike Penning) and the hon. Member for Blaydon (Liz Twist). I thank them for their contributions, particularly the right hon. Gentleman for setting the scene.

FOP is an extremely rare condition, but it is important that the matter is aired in the Chamber and the right hon. Gentleman has done that well. He is probably right that the relevant Minister is not here. That is no disrespect to the Minister who is here—we know that he is an honourable person, who will respond positively within his remit. If another Minister needs to take the matter on board, we look to the Minister who is here to make the case persuasively to them, and hopefully we will get a response.

When the right hon. Member for Hemel Hempstead asked me whether I would come along to support him, I automatically said that I would, because the debate is about a health issue, health is one of my portfolios and I wanted to understand the condition. I have always had a particular interest in rare diseases. Long before I came here, I was a member of the Northern Ireland association for rare diseases. I am therefore particularly interested in the subject.

I will be honest: I knew little about FOP. I had to research it, and the right hon. Member for Hemel Hempstead gave me some pointers. It was so interesting to read about it and to learn how rare it is and how little we know about it. FOP is an exceptionally rare genetic condition, where soft tissue develops into bone, creating a second skeleton. The right hon. Gentleman illustrated the condition clearly when he described the bruise, the bump, the jag or the discomfort. Around 70 known individuals are diagnosed in the UK, and the disorder has been described as impacting “one in a million.” That gives an idea of the rarity of the condition.

The House is tasked with highlighting the issue and raising awareness, and I hope that the debate will do that. As far as I am aware, there are only two known cases in Northern Ireland, and they are twin sisters. I do not have their permission to name them, and I would not do that, but there has been public information about the case.

[Sir Mike Penning]

My hon. Friend has touched on the really important point of the lack of diagnosis. If we know that one in a million children will be born with it, the calculation for the world population is pretty obvious. We are nowhere near identifying the numbers that should be out there. In my constituency and in any other hon. Member’s constituency, there are probably children who have been born with the condition. However, the length of time it takes to get a diagnosis—because the test is not part of the programme—is the most important thing. The condition can be tested for if there is a will.

[Jim Shannon]

The right hon. Gentleman has made a simple request about diagnosis. Perhaps awareness can be raised of the simple test, which it is so important to do. I understand that the twins in Northern Ireland are rightly keen to raise awareness of the issue.

Such rare diseases are often ignored. Most people—including me before this debate—have little or no idea what it is or, more importantly, what we can do to raise awareness. But today we can use our position as MPs to highlight the issue, with the co-operation of the Minister and the shadow Minister. I cannot for a moment imagine what it must be like to grow up with a condition about which there is little or no information, not to mention what it would have been like when the twins were children, when there was no cure or treatment for the condition.

Early and correct diagnosis is key to changing the life of someone suffering with FOP, as the right hon. Gentleman said. This debate is a request for hope and for progress for our constituents. The purpose of this debate is funding, with the hope of a potential trial of the existing drug Saracatinib, originally developed by AstraZeneza as a cancer drug. The underlying issue is that if the STOPFOP trial is not completed, the money spent on it will be wasted. Given the progress of trials and the advancement in medication, it is right that every effort should be made to try to find that money to ensure that the investigation into that treatment takes place.

[Sir Mike Penning]

Like all clinical trials and all things in health, there are other things the trial could help with. I am not a scientist, but it has been put to me that while we are looking at clinical trials into FOP, there may be help for osteoporosis—brittle bones—and skeletal damage, particularly that suffered by the military. Even though we are talking about a tiny percentage of the population with FOP, the population with brittle bones is huge. It seems that there is very little cure for it apart from taking calcium tablets. If we get the principle right on what is causing the bone growth, perhaps the research can be extended past FOP and we can help millions of people in other areas.

[Jim Shannon]

The right hon. Gentleman is absolutely right. Whenever trials take place there are always benefits, although perhaps not the intended ones. None the less, the focus can be larger, whether it be brittle bones or whatever. What was originally a cancer drug has been found to be beneficial to those with FOP.

As initial funding for the trial is running out, the main asks are to ensure that additional funding is allocated, while ensuring that secured funding extends to allow the trial to include children, especially the screening of new-born infants—as the right hon. Gentleman has referred to. Many have said that early and correct diagnosis is key to changing the life of someone with FOP, so I cannot imagine how the trial could not extend to newborns and extremely young children.

Raising awareness is how we will improve treatment for the condition. I have been made aware that there are only three knowledgeable FOP clinicians in the whole of the United Kingdom of Great Britain and Northern Ireland. That leaves patients often finding themselves treated by doctors with little or no FOP knowledge, which is rather disappointing, but focuses attention on those three clinicians. Like other conditions, patients must battle to be heard. Being aware of what to look out for is crucial: shortened or turned-out toes in young children raise concern, but if combined with tumour-like swellings, FOP is almost certain. It has also been raised that many patients are given biopsies and misdiagnosed with cancer. Others have had limb amputations, which perhaps was not the right way forward, but a response to not being quite sure what the problem is.

Having better access to a wider pool of experts would make a huge difference in diagnosing and treating people correctly. The charity FOP Friends, based in Oxford, is fantastic at supporting families. I have also seen some of the social media pages of parents of children who have FOP. Their work is absolutely incredible.

[Sir Mike Penning]

I thank the hon. Gentleman for giving way—thank goodness we have plenty of time to debate this issue. As he alluded to, there was a petition on social media, which was signed by well over 100,000 people. The Government’s response—I should have mentioned this to the Minister—is that they have funded research into FOP, but I am afraid that does not appear to be the case. They have funded research into rare diseases, not FOP. That is probably crucial when it comes to the public’s belief in what we do in this place.

[Jim Shannon]

The Minister took note of what the right hon. Gentleman said, so I have no doubt that there will be a response. The Minister has a genuine interest in the subject and I hope we will all be encouraged by what will have been said.

The parents are the main drivers of the campaign and the effort going into it is truly incredible. Many different people are making an effort with FOP Friends, whether the families, clinicians, those involved in clinical trials, ourselves as Members of Parliament, and, ultimately, the shadow Minister and the Minister.

To conclude, I thank the right hon. Member for Hemel Hempstead again for raising this issue with us today. He speaks so highly of his constituents. He does it all the time, by the way, but he did it again today. He has indicated to me that he is not running for Parliament again. We will miss his constant and compassionate commitment, interventions and speeches in this Chamber. He does not always do what his party wants him to do, but he always does what is right and that is what I admire about him as an individual.

It is important that we do all we can to help those with this condition to cope. We must do more to fund research into this trial. I sincerely look forward to hearing about developments in the future. To give those with FOP a better quality of life just like the rest of us, we need the Government and the Minister, from whatever Department, to help deliver just that.

Countess of Chester Hospital Inquiry

Jim Shannon Excerpts

Monday 4th September 2023 Commons Chamber

[Steve Barclay]

As I have said, significant action has been taken over those 10 years to strengthen transparency, action taken on data and the ability of freedom to speak up guardians to ensure that more safeguards are in place. Part of the purpose of the inquiry is to test whether further action is needed. I have already asked NHS England to look again at areas where recommendations have been made and what further action we can take.

[Jim Shannon (Strangford) (DUP)]

First of all, I thank the Secretary of State very much for the tone and the compassion of all his answers. He has encompassed all our thoughts and emotions in a very positive way, and I thank him for that. Can he confirm that any procedural changes that come from lessons learned from this dreadful case will be shared throughout the trust areas? It is a horror that has shaken every parent, pregnant mother and midwife in every corner of this United Kingdom of Great Britain and Northern Ireland. They want to know how they can protect the most vulnerable in our society. How can Government ensure that finances do not preclude precautions being taken to protect babies and also staff on the wards? Will the inquiry’s findings be shared with all devolved Administrations?

[Steve Barclay]

I am happy to commit that the inquiry findings will be shared with the Administrations across Great Britain and Northern Ireland. It is important that the lessons are learned. It is also important that we look at where staff move—that includes not just within England but in Northern Ireland—and at where patients from one jurisdiction may be treated in another for a period of time. Those issues apply across the United Kingdom. We should have a UK-wide approach, including to data and looking at variation across the United Kingdom. I know that the hon. Gentleman will take a keen interest in that.

Radiotherapy: Accessibility

Jim Shannon Excerpts

Tuesday 18th July 2023 Westminster Hall

[Selaine Saxby]

I do indeed agree with the hon. Member. In my case, North Devon is the fourth worst constituency in the country for access to radiotherapy services. North Devon is home to the smallest and most remote hospital on the UK mainland—and possibly the most loved. An exceptional team works tirelessly to deliver the best care, despite the challenges of rurality and the availability of staff, mostly linked to the availability of affordable housing, which is currently at its most extreme.

Radiotherapy is usually a series of daily treatments over a number of weeks. Far too many of my constituents choose not to have radiotherapy because the 120-mile round trip each day is too much to consider on top of the understandable pressures that patients with a cancer diagnosis already experience.

Radiotherapy is a far less invasive treatment than many others. With such an elderly population in North Devon it is often the best treatment for patients. A further complication that has been brought to my attention by the wonderful volunteer drivers we have in North Devon who help patients to their appointments across the expansive county, often to Exeter—a 120-mile round trip—for many different treatments, including radiotherapy. I do not want to discourage anyone from reaching out for those services, it will be clear to everyone that a daily radiotherapy session involving a journey of that length is a significant undertaking for patients and volunteer drivers alike. We have a declining number of volunteer drivers, which restricts driver availability for other patients.

It is hard to explain to those who have not visited North Devon the remoteness and the distances involved in undertaking all sorts of treatments. We benefit hugely from the merger of our hospital trust with Exeter’s, but that does not bring Exeter any closer. While it is positive that the backlog of patients waiting longer than 62 days for a GP referral is improving, the 62-day wait to start treatment is not. We know that every four weeks of delay in starting cancer treatment can increase the risk of death by 10%. To ensure everyone receives timely cancer care, radiotherapy needs to be an accessible treatment for every patient.

[Jim Shannon (Strangford) (DUP)]

I commend the hon. Lady for bringing forward a matter that is so important, which I think all of us here recognise. She has set the scene very well.

Another issue, which the hon. Lady is perhaps coming to shortly, is the shortage of radiotherapists across the United Kingdom. I understand that England is some 1,500 shy, and we have vacancies in Northern Ireland as well. The training takes five years, which means that it will be five years before the workforce, who are under pressure now, make gains, and that is if all the vacancies are filled. Furthermore, the age of current radiotherapists is an issue. Does the hon. Lady think that the Government need to take the initiative and put in place a visionary recruitment plan for the five-year period?

[Selaine Saxby]

I thank the hon. Gentleman for his intervention. We do not talk enough about the lack of specialist staff in this area, and I am indeed going to talk about the need for a proper plan for radiotherapy. Obviously, that involves resources of all types moving forward.

I think we all ask why a treatment as effective as radiotherapy is not used more often. Funding for radiotherapy falls between the cracks, and radiotherapy receives only 5% of the cancer budget. While there has been specific investment in radiotherapy, such as the £162 million in 2016 to replace 64 out-of-date machines, and the additional £32 million in 2019, there will be approximately 74 machines in need of replacement by the end of 2024.

We all know the NHS budget is under strain, but radiotherapy is the closest thing we have to a silver bullet for improving cancer care. An investment of £200 million would update all the machines due to be out of date by the end of next year, benefiting an estimated 50,000 people a year. An investment of £45 million in an innovative British technology—surface guided radiotherapy—could reduce waiting times by 1.8 weeks nationwide, and the use of artificial intelligence tools in radiotherapy could save clinicians two hours per patient.

If radiotherapy received between 10% and 12% of the cancer budget, instead of 5%, we could invest in more machines to bring ourselves up to international standards. In England, we have 4.8 treatment machines per 1 million people, while France has 8.5. and Italy 6.9. New machines and techniques would treat patients more quickly and help to clear the backlog. We need to reap the benefits of successful investment in early diagnosis and increased screening programmes so that early diagnosis leads to timely treatment and improved patients outcomes, rather than long and stressful waits for treatment.

We also need to focus investment in the right areas. Treatments such as proton therapy do not help patients outside Manchester and London. Proton therapy assists only 1% of patients, and my constituents in North Devon do not benefit from more investment in urban centres.

Defibrillators: Public Access

Jim Shannon Excerpts

Tuesday 4th July 2023 Westminster Hall

[Abena Oppong-Asare]

I thank the hon. Member for making such an important contribution and Lucky2BHere for the work it is doing. I acknowledge his constituent, whose life was saved by this work. Volunteers are doing a lot of work to raise money for defibrillators. I have seen it happen in my constituency recently, where the Friends of Lesnes Abbey and Woods have raised money for defibrillators.

I welcome the Minister’s announcement that £1 million will be available for community defibrillators. I am sure that he will set out how that money will be used and what impact it will have. Otherwise, the money risks being more of a PR exercise than an exercise in serious public health policy.

[Jim Shannon (Strangford) (DUP)]

I commend the hon. Lady for securing the debate. She was very kind to mention me earlier—I brought the Automated External Defibrillators (Public Access) Bill to the House in 2020, as most Members will know. The Government accepted the need to have defibrillators in schools, which was really good.

The person who made that happen was Mark King, whose son Oliver died in March 2011 from a cardiac arrest—he was an outstanding young man who would have gone very far in the world. There have been 4,500 AEDs placed in schools, 70,000 staff have been trained in AED awareness and 47 lives have been saved. Two of the lives saved were in my constituency, because the defibrillators were in place at the right time. I congratulate the hon. Lady on securing the debate, and I look forward to doing even more. Perhaps the Minister can give an indication what the next steps will be.

[Abena Oppong-Asare]

This is not to blow his trumpet, but I thank the hon. Member for the work he has done on the issue and for the important points that he just highlighted.

Let me go back to my point about the Minister’s announcement of the £1 million that will be available for community defibrillators. I have questions about the timing of the announcement, just a few days ahead of this debate. What will the method of distribution be for the roll-out? I am concerned that Ministers will pitch community groups against one another in a cruel competition to see who wins. The danger is that the winners are either the best organised or have the loudest voices, or else are favoured in the eyes of Ministers. This does happen with schemes of this nature. Resuscitation Council UK warns about

“defibrillators being disproportionately stored in communities that have resources, amplifying the UK’s mismatch between Automated External Defibrillator…density and Out of Hospital Cardiac Arrest incidence. By instead targeting public-access devices in areas of poor health and high OHCA incidence, this initiative could increase the chance of survival in the most high-risk communities.”

There is also the issue of public awareness and knowledge. Each year, there are 60,000 out-of-hospital cardiac arrests in the UK, with less than one in 10 surviving. While immediate CPR and defibrillation can more than double the chances of survival, public access defibrillators are used in less than one in 10 cases. Defibrillators must be located in well-signposted, unlocked and easily accessible places that members of the community can access immediately in an emergency. They must be maintained and ready for use. By the way, the criminal justice system should throw the book at anyone convicted of vandalising public access defibrillators. Few crimes are more mindless than selfishly disabling a defibrillator that might save a stranger’s life. Does the Minister believe that the current range of punishments available to the courts for vandalising a defibrillator is adequate?

As the House will know, there is a national database of locations of defibrillators. It is called The Circuit and is maintained by the British Heart Foundation and the NHS. I pay tribute to Resuscitation Council UK and St John Ambulance for their work, but the database is not complete. The Circuit currently has more than 70,000 defibrillators mapped, but there are estimated to be between 100,000 and 200,000 devices in the UK. This means that emergency services, including the ambulance service, might not be able to direct people to a defibrillator to save someone’s life. Will the Minister explain how that can be acceptable and what the Government are doing to rectify the situation?

[Jim Shannon]

The hon. Lady is right to outline the fact that many people do not necessarily know where defibrillators are located, and there is a need to ensure that that happens. Does she agree that one thing that should happen—maybe the Minister can answer this question—is the teaching of CPR, which is crucial to ensuring that people feel confident enough to use the apparatus of a defibrillator? Does she feel that the Minister should take that issue on board as well?

NHS Long-term Workforce Plan

Jim Shannon Excerpts

Monday 3rd July 2023 Commons Chamber

[Steve Barclay]

The Under-Secretary of State for Health and Social Care, my hon. Friend the Member for Harborough (Neil O'Brien) is looking at how we deliver more services within the existing contract, and at what incentives and reforms can be put in place to ensure that the parts of the country that find it hardest to recruit dentists are best able to do so, through both our domestic supply and international recruitment.

[Jim Shannon (Strangford) (DUP)]

I welcome the Secretary of State’s statement and the positivity he is trying to bring forward. The NHS workforce plan has concluded that the number of places in medical schools each year will rise from some 7,500 to 10,000, but in Northern Ireland it is a very different story: I know it is a devolved matter, but the Royal College of Nursing is facing cuts that could result in the number of places falling to 1,025 per academic year. Will the extra money that the Secretary of State announced be subject to Barnett consequentials? I know he is always keen to promote all this great United Kingdom of Great Britain and Northern Ireland together, so what discussions has he had with the Northern Ireland Department of Health and the Northern Ireland Assembly to ensure that Northern Ireland is not left behind? When we are crying out for staff, our students should have a real opportunity to learn and work in the NHS field.

[Steve Barclay]

Barnett consequentials will apply to the £2.4 billion funding over the five years. In respect of new roles, regulatory changes apply on a UK-wide basis. The plan itself is for the NHS in England, but we stand ready to work with partners across the United Kingdom where there is shared learning on which we can work together.