Westminster Hall
Westminster Hall is an alternative Chamber for MPs to hold debates, named after the adjoining Westminster Hall.
Each debate is chaired by an MP from the Panel of Chairs, rather than the Speaker or Deputy Speaker. A Government Minister will give the final speech, and no votes may be called on the debate topic.
This information is provided by Parallel Parliament and does not comprise part of the offical record
Backbench Business
Westminster Hall is an alternative Chamber for MPs to hold debates, named after the adjoining Westminster Hall.
Each debate is chaired by an MP from the Panel of Chairs, rather than the Speaker or Deputy Speaker. A Government Minister will give the final speech, and no votes may be called on the debate topic.
This information is provided by Parallel Parliament and does not comprise part of the offical record
Ehlers-Danlos Syndrome and Craniocervical Instability
(1 day, 9 hours ago)
Westminster HallRead Full debate Read Hansard Text Read Debate Ministerial Extracts
Westminster Hall is an alternative Chamber for MPs to hold debates, named after the adjoining Westminster Hall.
Each debate is chaired by an MP from the Panel of Chairs, rather than the Speaker or Deputy Speaker. A Government Minister will give the final speech, and no votes may be called on the debate topic.
This information is provided by Parallel Parliament and does not comprise part of the offical record
Josh Newbury (Cannock Chase) (Lab)
I beg to move,
That this House has considered outcomes for patients with Ehlers-Danlos syndrome and craniocervical instability.
It is a pleasure to serve under your chairship, Ms Furness. Before I start my speech, I thank the Backbench Business Committee for granting us the time for this debate. I also thank Members from across the House who supported our application, and the clinicians, the charities and, most importantly, the patients who have shared their experiences in order to inform the debate.
Let me also take this opportunity to warmly welcome the Minister to what is still her fairly new role. I know that throughout her time in Parliament she has been a staunch advocate for people with conditions such as less survivable cancers and other rare conditions, and for people who have suffered from medical failings, such as those with pelvic mesh. Throughout those campaigns, she has above all given voice to people who feel let down and forgotten by our healthcare system, so I know that she will empathise with much of what will be said in today’s debate.
In April last year, I had an email from my constituent Connor Edwards. Connor opened his email by telling me that he was in “sheer desperation.” He explained that he was living with two conditions, Ehlers-Danlos syndrome and craniocervical instability—having pronounced them correctly, I will now refer to them as EDS and CCI.
I will be honest with the House: until that point, I had never heard of these conditions. I did not know how profoundly they affect people such as Connor, or the extent to which they are unseen in our NHS. Six years ago, Connor was 25 and living a very active life. He was a keen fisherman and mountain biker and, like many people in my constituency of Cannock Chase, he loved to spend his time outdoors, surrounded by the natural beauty that we are so fortunate to have on our doorstep.
Connor’s story with EDS and CCI began when he was bitten by a tick while he was out on the Chase and subsequently developed Lyme disease. However, it turned out that that was only the start. In seeking explanations for his worsening health, Connor had to do so much research himself. Then, after finally seeing many specialists, he was diagnosed with EDS, a connective tissue disorder that affects the collagen responsible for supporting the skin, joints, blood vessels and internal organs.
Some people living with EDS experience chronic joint dislocations, severe and persistent pain, and significant neurological complications. One of those complications in cases like Connor’s is CCI, whereby the skull no longer sits safely on the spine, placing pressure on the brain stem and spinal cord.
I am conscious that I can get quite technical when I discuss Connor’s case, so I will put it in his words. He says that his head is quite literally falling off his body. Chillingly, that is not something that is picked up on a scan but not felt; rather, Connor feels his head shifting around dangerously every day, with all the pain that goes with that. He is also acutely aware that his symptoms continue to worsen.
It is the intersection between EDS and CCI that I will focus on today, and I know that many other hon. Members will make important contributions about the broader challenges faced by people living with EDS.
Alistair Strathern (Hitchin) (Lab)
I congratulate my hon. Friend on securing this debate on a topic that, like him, I must confess I had not heard much about until I spoke to two of my constituents about it. Having heard from Sarah and Mark, who both suffer from craniocervical instability, I know that it is impossible for those suffering from it not to be left devastated by its impact. It not only limits and narrows their lives and what they can do, but crushes their family finances, as they are forced to seek expensive private treatment due to inadequate access to treatment via the NHS. Does my hon. Friend agree that it is really important to put that right and that we should start to consider what a better clinical pathway for this condition might look like, so that everyone suffering from it can access the treatment they deserve in their community?
Josh Newbury
I completely agree with my hon. Friend. In this country, we are incredibly proud of our NHS and the care that it can give people who have very common or very rare conditions. However, as I will set out further, and as he has just said, so many people with these two conditions feel very unseen, and we absolutely need to correct that. People should not have to fundraise to seek private treatment to be seen by doctors.
I will ensure in my speech that the experiences of patients who develop these two conditions and serious neurological complications are heard. When I speak to Connor now, the reality of what he is living with is incredibly difficult to hear. He has told me how much he is struggling, not just with the physical symptoms of his conditions but with his battle to be recognised in our health system. He feels that his conditions are not seen, not properly assessed and too often misunderstood. Like many other people, he has been left feeling that he is not even believed.
Connor told me that at one point he was barely eating, in order to try to save enough money to see a specialist neurosurgeon abroad. He does not come from a privileged background, so he has had to set up a crowdfunding page in the hope of raising enough money to get the specialist surgery and treatment that he needs. However, like so many patients in a similar situation, he is falling short. Even if he is able to reach his target and go abroad, he will be left asking the very simple question: “What happens when I come home?” He has described feeling as though he has been “gaslit” by the system, with his symptoms attributed elsewhere and his concerns not taken seriously.
Patricia Ferguson (Glasgow West) (Lab)
I congratulate my hon. Friend on securing this important debate. Like others, I was not aware of this condition until I was contacted by my constituent Jo, who has bravely shared her story widely. I am grateful that she has done that. However, one of the things that Jo wanted to have raised today is that a recent report by Edinburgh University indicated that patients in Scotland can wait up to 20 years for diagnosis, and that when they are diagnosed—if they are diagnosed—they then, as my hon. Friend has said, face a very difficult journey in trying to find care, help and medical treatment. They often have to come south of the border for that treatment and pay for it privately. I echo my hon. Friend’s point about finding a pathway for people with these conditions, and I hope that today’s debate leads to one.
Douglas McAllister
I congratulate my hon. Friend on securing this debate. In Scotland, one third of those living with EDS or hypermobility spectrum disorder are living with at least one long-term, serious condition. A number of my constituents contacted me in the lead-up to this debate to share their stories. They all repeated the same experience of delayed or overlooked diagnosis, which led to unnecessary pain and distress. Does my hon. Friend agree that this is a UK-wide issue that requires earlier diagnosis, better awareness and integrated care to improve people’s outcomes and their lives?
Josh Newbury
I absolutely agree with both my hon. Friends. They echo what I have heard from many of my constituents. This issue is often overlooked, and we need to do so much better for many thousands of people across the country, so I thank them for sharing their constituents’ experiences.
So many people are in a similar situation to Connor’s, which is not unusual. Many people have told me that they have been diagnosed with Munchausen syndrome, so they are not just dismissed but told that their condition is fictitious.
Uma Kumaran (Stratford and Bow) (Lab)
The point about being dismissed is one I have heard time and time again from my constituents. They are being passed from pillar to post, repeating the same stories again and again, and not being believed or heard. When someone is living with a chronic and lifelong condition, that further adds to their distress. The rare diseases action plan, published earlier this month, sets out the importance of increasing awareness of rare diseases among professionals. Does my hon. Friend agree that we can only shift health services towards prevention through early diagnosis if healthcare teams are equipped with that knowledge from the beginning, and that underdiagnosed diseases like Ehlers-Danlos should be at the heart of that?
Josh Newbury
I could not agree more with my hon. Friend. The exhaustion and exasperation that she refers to occurs, as we have heard from other hon. Members, time and time again. I agree that the work being done on rare diseases is incredibly important, and at the end of my speech I will come to how I hope that we can build on that work for people who suffer from these conditions.
The impact on Connor’s mental health has been immense. He told me that he feels as though he is “rotting in bed”, watching his condition deteriorate without any clear route to help. He has spoken openly about how low he has felt and the thoughts that he has had because of that, including considering whether he has any options left at all. While all that is happening, his condition continues to worsen. In recent days, he has experienced seizures and episodes affecting his swallowing and breathing. These symptoms are deeply concerning and underline the urgency of his situation. In response to inquiries about what support might be available, I have been told that there is currently no established or commissioned NHS service for investigation, multidisciplinary discussion or surgery for CCI in patients with hypermobile EDS. Connor is seriously unwell and is getting worse, and he knows that there is no clear pathway for him to access the care he needs anywhere in this country.
Late last year, Connor and I had the opportunity to meet with the then Minister for Public Health and Prevention, my hon. Friend the Member for West Lancashire (Ashley Dalton). We discussed the challenges faced by people living with these complex conditions, including the lack of support in the NHS, the shortage of trained specialists and the fact that there is no way for anybody to get an upright MRI scan in the UK, which is crucial for diagnosing CCI. I was very grateful to my hon. Friend for her time and her compassion, and I would like to take this opportunity to wish her all the best with her treatment.
We were joined at that meeting by representatives from the brilliant charity Ehlers-Danlos Support UK, as well as Connor’s advocate, Natasha, all of whom are in the Public Gallery with us today and have worked closely with my team to help us to better understand the link between EDS and CCI and what that means for people with those conditions. I sincerely thank them for that.
What I have heard from Natasha, and from people across the UK who have contacted me, is that Connor’s is not an isolated case. I will share a few more experiences with the House to reveal the true scale and seriousness of the issue. I have heard from patients who, in 2017, were assessed for surgery here in the UK as part of a planned programme involving international specialist experience. At that point, there was not only recognition of this condition but a clear intention to treat it in the NHS. Yet those procedures were cancelled shortly before they were due to take place, leaving those people without care and without a pathway forward. What is most concerning is that, in the years since, we have not moved forward; in many ways, we have moved backwards.
I have heard from people who were told that their condition was life-threatening, yet were left to face that reality alone, without support and without options. From there, the trajectory becomes all too familiar: people return again and again to NHS services, searching for answers, only to be told that nothing more can be done. I have heard from people who have had to raise extraordinary sums of money in a matter of weeks—while seriously unwell—and from families who have had to leave the UK altogether to access care, only to find themselves stranded overseas as conditions worsen and costs escalate.
Even when people do receive treatment—often at enormous cost—they return home to a system that is still unable to support them, with no clear route for aftercare, rehab or specialist oversight. What is striking is not just the severity of these stories but their consistency —different people, in different parts of the country, seeing the same gaps, barriers and outcomes.
Natasha has also shared her own experience with me. Like many, she spent years seeking answers within the NHS as her condition deteriorated, only to have her symptoms dismissed. At her most unwell, she lost the ability to stand, walk and even swallow properly. When she was upright, sitting or standing, even briefly, her arms became paralysed, she lost her speech and the ability to swallow, and was also losing her vision. These are absolutely horrific symptoms.
Natasha was eventually forced to seek specialist care abroad, having travelled by air ambulance to get there, where she underwent lifesaving surgery at significant personal cost. Since returning to the UK, she has continued to face challenges in accessing the specialist follow-up and rehab that she needs. Despite everything she has been through, Natasha has worked tirelessly to support patients like her and to bring this issue to light. I place on record my thanks to her, not only for sharing her experience but for the work she is doing as an advocate for other people, such as Connor, in the same position.
One reason why patients are passed between multiple specialists, and why diagnosis is so challenging, is the lack of access to appropriate diagnostics. Current NHS pathways are designed for CCI caused by trauma, such as road-traffic collisions, but not for EDS. In cases of traumatic instability, the problem is usually visible on standard scans performed lying down, and can be assessed through established neurological pathways—including the very fusion surgery that Connor is seeking. But in EDS, the instability comes from ligament laxity and is often positional, so that when someone is upright, the head is not adequately supported by the neck. That is often not visible when patients are lying flat in a standard MRI scanner, so their scans might appear normal despite ongoing neurological symptoms. One can see how, in cases like that, diagnoses such as Munchausen can come up. That means that many patients find themselves going back and forth within the system, often ending up in A&E with chronic symptoms and then being discharged because clinicians just do not know what to do.
Symptoms can overlap with other recognised conditions, resulting in delays due to misdiagnoses and therefore missed opportunities to prevent further deterioration. There are also risks in how patients are managed during the period of instability. If instability is not recognised as a possibility, patients might be directed towards physiotherapy or exercise-based rehab, which, although well intentioned, can in some cases make things worse.
At the same time, we know that CCI surgery is already performed in the NHS, yet there is no equivalent for patients with EDS. Imagine someone with a broken arm going to A&E, but being told, “I’m sorry, we only X-ray legs.” They point to their arm, the doctor can see it is broken and they can feel it is broken, but they cannot scan it, so they have to go home—over and over. Even worse, imagine if, instead of being provided with a plaster cast, they were referred to counselling. That might seem far-fetched, but that is what patients with EDS and CCI are facing.
In the absence of an NHS route, patients are forced to take matters into their own hands, as I have said. In some cases, they might even require specialist medical transport to get abroad. Devastatingly, some find that their condition is too advanced for them to even make the journey. As I have said, there is then no aftercare, no consistent access to specialist imaging reviews and no co-ordinated rehab; many people are refused any of the care that would normally follow complex neurosurgery.
Before I conclude, I would like to reflect on what has struck me since I began working on this issue on behalf of Connor. I have lost count of the number of people who have been in touch with me from across the country, and of the conversations with hon. Members who hear similar stories from their own constituents. I have just been told that an appeal from EDS Support UK has reached almost all MPs—over 98%. That is how many of our constituents are getting in touch with us about this issue.
The conditions are often described as rare, but the truth is that for many patients they are simply rarely diagnosed. Without a pathway to diagnosis or treatment, patients with EDS and CCI are effectively invisible in NHS data. Behind every email, message and conversation is somebody trying to be heard—trying to access the care they need and live a life that many of us take for granted. I should stress that it is not easy for people living with these conditions to even do that. Many people are forced to become campaigners and lobbyists, but their energy should not be spent fighting to prove that their illness is real or to get access to basic care. They should be able to focus, as anybody should, on being believed, supported and treated.
The last time EDS was debated in this Chamber was May 2024. With the general election called within days of that debate, the follow-ups on the issues raised by Members then were not possible. My ask of the Government is simple, and it comes not from me alone, but from patients, clinicians and organisations such as EDS Support UK, and from Connor. Patients are not asking for predetermined clinical outcomes or for routine surgical intervention; they are asking for recognition that suspected CCI in EDS requires a clear, defined process for assessment in the health service.
In the short term, that means taking proportionate, practical steps to reduce avoidable harm, and making sure that access is appropriate, that diagnostic assessment happens and that a specialist opinion is given. It means being honest about where no pathway exists and providing clear guidance to avoid potentially harmful management when instability has not been ruled out. Finally, it means creating defined escalation routes with funding mechanisms where clinically necessary.
In the longer term, we clearly need an NHS diagnostic and care pathway with proper clinical governance, referral routes, specialist input and continuity of care so that access to diagnosis and treatment is based on clinical need, not the ability to pay.
John McDonnell (Hayes and Harlington) (Lab)
I apologise; this is one of those days when multiple debates are going on, on each of which I have received representations from constituents, so I will have to speak and leave. The point my constituents have made to me is exactly as my hon. Friend sets out, which is that we want a comprehensive strategy. We know wonders cannot be worked overnight, but we want a timed and programmed strategy that addresses the agenda of issues that he has raised, and to give hope to people as well. Where the Government develop strategies—for example, on cancer—we are having breakthroughs and success in terms of diagnosis and treatment. I hope that this debate will confirm that the Government are willing to develop a strategy, and of course resource it.
Josh Newbury
I could not agree more with my right hon. Friend. He mentioned a key word in this debate—“hope”, which is something that so many people with the conditions do not have at the moment. That is what we absolutely need to give them. I share his hope that there is a way forward, but we need to make sure that this group of patients is included in that.
I am told that the rare diseases pathway could be one route forward. I would love to have the chance to explore that further with the Department alongside the people who clearly have an interest in this. The Government have rightly placed health at the centre of their agenda, and through the NHS 10-year plan we have an opportunity to build a system that is more joined up, fairer and more responsive to complex conditions like the ones I have mentioned. But patients like Connor cannot wait for long-term reform. Without action now, many will continue to face avoidable harm, worsening disability and, in some cases, irreversible deterioration. Let this be the Parliament where we turn the tide, recognise the people who are being let down, and act to ensure that no patient is left without a pathway to care simply because their condition does not yet fit the system.
Several hon. Members rose—
Gill Furniss (in the Chair)
Order. I remind Members that they should bob if they wish to be called in the debate. We are hoping to give everyone five minutes, but we will see how we go.
Jayne Kirkham (Truro and Falmouth) (Lab/Co-op)
It is a pleasure to serve with you in the Chair, Ms Furniss. I thank my hon. Friend the Member for Cannock Chase (Josh Newbury) for securing this debate, which I have been asked by a number of constituents to attend. I would like to talk specifically about what it is like to live with Ehlers-Danlos syndrome in Cornwall, a rural and coastal area with the sea on three sides and only one acute hospital, which is in my constituency.
One constituent described moving from Kent to Cornwall a few years ago and finding that the services for patients with EDS in Cornwall were “virtually non-existent”. They were initially able to access care at the dysautonomia clinic in Derriford in Devon, but that has since closed with no successor. That has meant that my constituent has spent nearly £1,000 since December on appointments and travel to see private consultants. Many constituents told me that physiotherapy has helped them, but they have experienced long waits and found that there is a shortage of professionals experienced in the condition in the duchy. One told me that because of the lack of occupational therapists in Cornwall, he can have an OT appointment only every six months. Another said that they simply could not get treatment by a physio equipped to deal with EDS.
That lack of service leads patients in Cornwall to rely on their GPs, who may have patchy knowledge of the condition and are not necessarily equipped to deal with such complex issues. The lack of provision for EDS patients in Cornwall has even led some to move or consider moving up-country.
Our peripherality does not help with diagnosis times either, which is the second thing I want to touch on. Many constituents have written to me describing years of misdiagnosis and missed opportunities. One woman waited 10 years from the start of her symptoms and was finally diagnosed in London. A constituent with CCI was diagnosed by surgeons as far away as Spain and New York. A third constituent was diagnosed at 48 after many years of unexplained symptoms. Echoing what we heard from my hon. Friend the Member for Cannock Chase, she said:
“Over the years it took to get my diagnosis I felt that I was viewed as a hypochondriac or overanxious patient. The combination of multiple GP visits and not being believed had a…detrimental effect on my wellbeing and mental health. Even after diagnosis I continue to be frustrated by trying to engage with a…system that doesn’t work for people with this condition”.
A key issue highlighted was disjointed care. As EDS is a multi-system condition, every time a new body system develops an issue, the patient needs a new referral. As there is no care pathway for EDS and patients generally do not have access to a specialist, who could consider their symptoms as a whole and provide a joined-up treatment plan, that means multiple referrals, extra appointments, more travelling and more time off work—and therefore, more patients seeking private care.
My constituent Carley, who has EDS and CCI, had to fundraise and take out loans for her private surgery to relieve the pressure in her brain that was forcing the back of her cerebellum to herniate down into her spinal canal. She had been experiencing severe and progressive neurological symptoms, but was unable to access appropriate assessment and treatment through current NHS pathways. In her words:
“I developed intense pain in my head and neck that would make me physically sick, trouble standing, walking, swallowing, breathing, I was losing my vision. I was choking on food…as it was getting stuck in my throat due to my swallow reflex being affected. When I tried to lay down my skull would slide backward, and I would stop breathing. It was terrifying. I was getting intermittent body paralysis and many more equally terrifying symptoms. My bladder and bowels were not working properly & in most cases this condition then leads on to seizures. Nobody knew what it was or how to help me.”
I want to show a picture of the operation Carley had to secure her spine, because it is so shocking.
It would help all of my constituents considerably if the Department looked at developing a clear, accessible and appropriate pathway for patients. Does the Minister accept that patients with EDS and suspected CCI are in reality unable to access appropriate assessment or treatment through current NHS pathways? Will the Department commit to developing a clear, accessible and clinically appropriate pathway for those patients?
Jim Shannon (Strangford) (DUP)
It is a pleasure to serve under your chairship, Ms Furniss. I thank the hon. Member for Cannock Chase (Josh Newbury) for leading the debate. In the short time that he has been in Parliament, he has made a name for himself as an assiduous MP who works hard on behalf of his constituents. They should all be very proud of what he does for them. We welcome his speech today, and I wish him well in what he does.
I am also keen to speak in this debate due to my role as the Democratic Unionist party’s health spokesperson. Through that role, I always fight for more funding for the study and research of rare diseases. I have always had an interest in rare diseases, going back to my time in the Assembly—I was an Assembly Member for 12 years—and during all my years here as a Member of Parliament since 2010. There are some ladies in my constituency who have a deep interest in rare diseases. I had discussions with one family in particular just last week.
In Northern Ireland, conditions like Ehlers-Danlos syndrome and related issues, such as craniocervical instability, sit within a wider set of challenges around rare diseases, diagnosis and access to specialist care. The figures for Northern Ireland are limited and, unfortunately, Northern Ireland does not publish detailed prevalence data for EDS or CCI. Those conditions are often underdiagnosed and not consistently coded in health data systems. We have a lot to do in relation to data. Data is one of the things that always comes up when we talk about diseases, especially rare ones, because we need the data to know what the problems are and how to deal with them.
The Minister is certainly earning her money this week—I think this is her third or fourth debate in Westminster Hall. We are privileged to see her in her place, and I look forward to her contribution. She has a good heart, which she expresses through her responses to our questions.
It is estimated that one in 5,000 people have EDS. That suggests that 10,000 to 15,000 people are officially diagnosed, but that is an underestimate. My first question to the Minister is: do we have a better idea of the numbers in relation to EDS, and, if we do not, how can we get them? Furthermore, some 80% to 90% of diagnosed patients are female, as women are more likely to be diagnosed and more likely to present with chronic pain and joint issues. The hon. Members for Cannock Chase and for Truro and Falmouth (Jayne Kirkham) illustrated that with examples from their own constituencies.
One of the most prevalent issues is diagnostic times, because it takes five to 10 years to be diagnosed. Many people will see multiple specialists and they can also initially be misdiagnosed. For example, they might be told that they have fibromyalgia, anxiety or joint hypermobility. Specialist care is important for conditions such as EDS, especially regarding rheumatology, neurology and pain management, for which waiting lists are already extensive. Delayed recognition and treatment of physical symptoms can significantly affect mental wellbeing—the impact on people’s mental wellbeing as their bodies deteriorate cannot be ignored.
Prolonged uncertainty, unmanaged pain and reduced quality of life often contribute to anxiety, depression and wider psychological distress. More must be done to ensure that we do not allow it to get to that stage, and investigations should be carried out in a timely fashion. I ask the Minister, in relation to doctors and their diagnoses, does something need to be done with our GPs, our A&Es, our surgeons and those people who patients interact with first?
This debate highlights the urgent need to do more for those living with complex and often overlooked conditions. Too many patients face long delays, inconsistent pathways and a lack of specialist support. We owe it to patients to ensure that their symptoms are taken seriously, their diagnoses are not delayed and their care is not determined by their postcode. By investing in better data, stronger specialist services and greater awareness, we can move towards a system that delivers timely, fair and effective healthcare for all.
I have one more question for the Minister: she knows that research is incredibly important—it seems to have popped up in every debate that there has been this week. What is being done, through universities and partnerships with medical companies, to ensure that we chase up that cure for EDS and ensure that any patient, wherever they are in the United Kingdom of Great Britain and Northern Ireland, have the care and treatment they want, and have it now?
Uma Kumaran (Stratford and Bow) (Lab)
It is a pleasure to serve under your chairship, Ms Furniss. I thank my hon. Friend the Member for Cannock Chase (Josh Newbury) for setting out so powerfully why this debate is needed. I pay particular tribute to his point that the last time we had this debate, an early election was called soon afterwards. I also take this opportunity to welcome the Minister to her place. It is fitting that she is in the role, and I know she will bring her unparalleled empathy and care to it.
I am here on behalf of my constituent Rebekah and all those residents of Stratford and Bow who wrote to me to show their support for those affected by Ehlers-Danlos syndromes. As my hon. Friend the Member for Cannock Chase said, EDSs are complex genetic tissue disorders that are lifelong, incurable and chronically under-recognised. So-called rare diseases such as EDSs are in fact common in the UK: one in 17 of us will be affected by a rare condition at some point in our lifetimes. I would like to pay tribute to my mother’s sister, Chandra Ratharanjithan, who passed away last night due to a rare cancer. She fought it with grace and dignity.
Even when people access diagnosis, they do not always get the right care. For those with EDSs, these lifelong conditions will have a different impact over time. Symptoms change and develop, and we need to do more to ensure that those with chronic complex conditions are able to get the right care—responsive, joined-up care that is accessible to them and near their homes.
I am pleased to say that such work is already happening in Stratford and Bow. North-east London has one of the fastest-growing populations in the country. Although funding is not keeping pace with that change, east London is still taking innovative approaches to ensure that we can support patients with the complexities of lifelong conditions. Hospitals and research institutions in our part of the world are developing neighbourhood-based multidisciplinary teams that can be more proactive and that are more integrated in primary care. That is alongside local hospitals focusing on proactive community outreach for those with complex conditions. I extend an invitation to the Minister to come and see that fantastic work in person.
There is so much more to do to ensure that such care reaches every person in the United Kingdom who needs it, with a shift to a system of prevention, early diagnosis and swifter treatment. Those are all essential to make sure our health system finally delivers for not only those living with EDSs but everyone living with chronic or lifelong conditions.
I hope the Minister will set out how the Government’s 10-year health plan will support improved access to the kind of joined-up multidisciplinary care that is so beneficial to those with multi-system conditions and symptoms. For Rebekah and everyone else affected by EDSs, these powerful conditions can impact every single aspect of their lives. They also impact not only the person living with the condition but their families and all those who love them. We owe it to them to deliver change in this Parliament.
Gill Furniss (in the Chair)
We are doing quite well for time, but we need to finish Back-Bench speeches by 2.28 pm so that we can—as I am sure we want to—get the winding-up speeches and the Minister in.
Lee Anderson (Ashfield) (Reform)
It is a pleasure to serve under your chairship, Ms Furniss. Huge thanks go to the hon. Member for Cannock Chase (Josh Newbury) for securing this debate about Ehlers-Danlos syndrome, a condition I had never heard about until this Session of Parliament.
Just a few months ago, a young lady came to see me in Ashfield. Hannah is 17 years old and has the condition. She asked me to take part in this debate, so I am here to speak up on behalf of Hannah in Ashfield—she is, by the way, not the only person in Ashfield who has contacted me about this condition.
I asked Hannah to make a diary of her typical day, to see how her condition affects her. I know she will be watching this debate. These are her words, and I will read them out exactly as she has printed them:
“Every day I live with pain and joint instability in most areas of my body, especially my back, neck and legs. Painkillers don’t work for me, and I can’t get a physio referral as my whole body is affected and there isn’t a service for what I need as I am still classed as a child. Therefore, I get no support.
I am fully dependent on others to get around as I can’t self-propel my wheelchair due to frequent shoulder dislocations and lack of grip. I am still waiting to be seen by wheelchair services and have been on the waiting list for 18 months. My chair was brought by my parents but is no longer fit for purpose. I am not eligible for an electric wheelchair as I am classed as an ambulatory user. So, at 17 years old I am reliant on others completely to get around.
Due to my chronic fatigue and POTS I have to pace myself. I cannot go to college as it is too much for me and therefore have to be home educated. Even with pacing I spend a lot of time in bed due to pain and exhaustion. I am probably up and about a few hours a day every other day.
I can’t do much for myself as I have tremors and spasms in my hands, face and legs. I can’t cook safely, I have been refused my provisional driving licence due to my double vision, and I can’t go out independently because I can’t walk far.
Health services don’t understand EDS and I get dismissed a lot. I fall between the gap of children’s and adult services so get no support. This has an impact on my mental health and wellbeing as I feel overlooked and undervalued. Social care gives me 110 hours per year (2 hours per week) to spend on a support worker to go out, but the payment for this is £84 per month. So, the reality is that this gives me just over 1 hour a week if I was to pay someone the NMW. I am awaiting a review but there is a waiting list which I have been on for 6 months.
I just want to be more independent, in less pain and be able to socialise with my friends but this is impossible. I have a couple of very good friends, but they are busy with their lives doing things that I can’t do. I am very isolated with nothing to help me. My health is deteriorating all the time, and I worry for my future.”
Those are the words of Hannah from Ashfield. As we can see, her main concerns are a lack of wheelchair access, a lack of services and a lack of understanding. She is now on a waiting list for social care support, and she has been told that she will not be contacted until June 2026 to even start the process.
Unfortunately, over the past week, I have heard from a few other constituents; they also asked me to attend this debate, but I am here on behalf of Hannah. She has been let down by a system that we in this room control. We are responsible for that system; we are lawmakers and legislators. If we cannot alter the system to help people like Hannah, we should not be here. My one ask of the Minister today is to give hope to Hannah and the rest of the families in this country who suffer from this awful condition.
Liz Twist (Blaydon and Consett) (Lab)
It is a pleasure to serve under your chairship, Ms Furniss. I congratulate my hon. Friend the Member for Cannock Chase (Josh Newbury) on securing this important debate.
Over recent years, I have been contacted by a number of constituents with EDS, many of whom have severe health issues because of the condition. Indeed, many constituents have asked me to speak in this debate. A member of my staff team suffers with EDS, and with her permission, I can say that I have seen over recent years just how it has affected her, and how it has progressed.
Ehlers-Danlos syndromes, also known as EDS, have a profound impact on people’s lives, from chronic musculoskeletal pain and exhausting chronic fatigue to severe gut issues, allergic responses and immune system dysfunction. As we have heard, EDS has for a long time been considered a rare disease, which means that fewer than one in 2,000 people are either diagnosed or very likely to be diagnosed with it. As a recent former chair of the all-party parliamentary group on genetic, rare and undiagnosed conditions, I have had the opportunity to meet and speak to support groups for people with this condition about their experiences. However, a 2024 study of 300,000 GP patients in Northumberland found that as many as one in 250 people might have some form of hypermobility stress disorder—that is just those with a diagnosis. The true prevalence has been estimated at between 1% and 4% of the population.
Getting a diagnosis is a massive challenge for those with EDS. For some patients, it can take between 10 and 23 years after the onset of symptoms to get a diagnosis—that is up to 23 years of pain and fatigue before they can even start to manage the condition.
Cameron Thomas (Tewkesbury) (LD)
I thank the hon. Member for Cannock Chase (Josh Newbury) for securing the debate. I have several constituents with EDS, one of whom is a young lady who has suffered from malnutrition, regular hospital visits and frequent misdiagnoses. She now lives in a hospital bed in her parents’ living room, fed through a tube. She cannot get the care she needs, because it is not available on the NHS, which means her parents have to raise money to take her overseas for treatment. Will the hon. Lady join me, as so many other Members have, in calling for a clear treatment pathway for people with EDS?
Liz Twist
I will of course join the hon. Member in that, as he will hear at the conclusion of my speech.
Because of those delays in diagnosis and the lack of early management, patients are deteriorating more quickly and ending up on neurosurgery waiting lists, when much more could have been done at an early stage. Patients are losing their ability to exercise, play with their kids, go out on a weekend or, in some cases, work altogether. There is a huge cost for those with EDS in not just physical terms but social and life terms, and there is a huge cost to our NHS and the local economy.
I know from the experience of one of my members of staff the very real impact these conditions have on people’s everyday life. I now know that what once seemed to be idiosyncratic physical movements are part of their long-term impact, affecting everything—even her eyes, ears and nose. In the past two years, EDS UK petitions have gathered more than 33,000 signatures. In Wales, that has led directly to the co-creation of a primary care pathway, and we are now asking that England follows that lead.
EDS and HSD do not exist in a vacuum. Many patients find that the condition overlaps with other conditions, such as postural tachycardia syndrome, mast cell activation syndrome, myalgic encephalomyelitis, chronic fatigue syndrome and gut issues. Those overlapping conditions have an exponential impact on patients who are just trying to manage their everyday life. Under the current system, patients are bounced between different and disjointed secondary care specialties that do not communicate or understand the full breadth of the issue, having been forced to leave primary care practitioners who do not have the support they need to manage these complex patients. EDS UK has called repeatedly for a co-ordinated and multidisciplinary approach to this issue that is integrated across primary and secondary care to support both NHS staff and patients to manage the overlapping comorbidities safely and efficiently.
I want to ask the Minister the following questions. First, will she commit to commissioning National Institute for Health and Care Excellence guidelines for Ehlers-Danlos syndromes, and will the Department look to the primary care pathway recently co-created in NHS Wales as a blueprint for England? Secondly, what steps is the Department taking to establish co-ordinated cross-speciality multidisciplinary teams in secondary care so that patients with complex overlapping conditions such as EDS, PoTS and ME-CFS are no longer left in limbo? Thirdly, what steps is the Department taking to reduce the waiting times for patients with suspected EDS and to get them support and mitigation while symptoms are still in the early stages, which would lead to a faster diagnosis? Finally, given the extreme complexity of the conditions and the risk of spinal fusion for EDS patients, will the Minister back the creation of a national multidisciplinary neurosurgery team for CCI to ensure rigorous peer review and safe patient care?
We are talking about patients who have been suffering for up to 23 years before even getting a diagnosis. They have been repeatedly failed by a system that is not designed for them and does not understand them. It is time that this issue was treated with the seriousness it deserves.
Rachel Gilmour (Tiverton and Minehead) (LD)
It is a pleasure to serve under your chairmanship, Ms Furniss. I thank the hon. Member for Cannock Chase (Josh Newbury), who I would also be proud to call my hon. Friend, for bringing this debate to Westminster Hall. I do not think there is a single elected person sitting in this Chamber who does not realise what a wonderful privilege it is to represent all our constituents. But a day like today, when we have an opportunity to change the lives of people who suffer from EDS, is a particularly privileged day. I hold that thought at the front of my mind, and thank all Members for coming.
A few weeks ago I met one of the most brave, beautiful young women I have met in a long time. Her name is Stevie, and she lives in Willand, which is in the Devon part of my constituency. She came to see me, but she was quite worried about it because she had never been to see an MP before—there was a degree of trepidation. But she was so eloquent, passionate and determined to tell me about the impact that this dreadful disease had had on her life, I had no option but to come here today to repeat her words.
Like many of the constituents who have been mentioned, Stevie had to raise her own funds to get diagnosed and have the treatment. She was housebound and bedbound, and had to give up work. She has a wonderfully supportive husband who goes out to work six days a week to support her and their two young children, who happen to be autistic. What a beacon of honour and bravery—I just cannot imagine how she lives on a day-to-day basis.
Those with EDS have been left to suffer without the structures needed to make timely, evidence-informed decisions. Patients are not asking for predetermined outcomes or routine surgery; they are asking for recognition that suspected craniocervical instability in Ehlers-Danlos syndrome requires a defined process for assessment and management within the NHS.
Of Ehlers-Danlos Support UK members, 92% are not able to work because they are so affected by the condition. Almost half of those people were working, but had to give up entirely because of the syndrome’s debilitating impact. This is not just about people’s lives and their mental health; it is actually about supporting our country and enabling people with this syndrome who do want to work to make a contribution.
Rather than leaving patients to deteriorate to the point of having to consider neurosurgical options, there should be an early diagnosis. As many colleagues have said, establishing a specified EDS care pathway makes the case for itself. Earlier intervention would improve quality of life and strengthen the economic health of the country by enabling people with EDS to remain in work—like the member of staff of the hon. Member for Blaydon and Consett (Liz Twist).
It is true that the Department of Health and Social Care’s recognition of the complexity of EDS and the low awareness surrounding it is a step in the right direction. But I believe the central ask of this Government and the Minister is to heed the collective call from across the parties for a defined diagnostic and care pathway.
Peter Prinsley (Bury St Edmunds and Stowmarket) (Lab)
It is a pleasure to serve under your chairship, Ms Furniss. I was not going to talk in this debate until last week, when a lady came to my surgery at Bury St Edmunds. I used to hold surgeries all the time for patients with ear, nose and throat disorders; now I hold surgeries for constituents who come with political difficulties. This young lady was in a wheelchair, and told me she had Ehlers-Danlos syndrome and that she had been to Germany to get a diagnosis, after many years of failing to get one in this country.
Ehlers-Danlos syndrome is a disorder of the protein that is involved in the making of the connective tissue—which is the tissue that joins us all together—particularly the elastic bits. When I was a medical student there were four types of Ehlers-Danlos syndrome, and it was quite a favourite topic for examine questions. But now I see from the Ehlers-Danlos Society that there are 13 recognised types of the syndrome. We always thought of it as the double-jointed disease, and one would loosely test it by seeing whether someone could take their thumb and put it against the side of their arm—I increasingly cannot even get mine to a right-angle now.
It is a rare disorder. To give hon. Members a flavour of the different sorts of Ehlers-Danlos syndrome, there is a hypermobile Ehlers-Danlos, which is the double-jointed person. That is about one in 5,000 people. The classical Ehlers-Danlos, which is where people get this very stretchy skin that kind of falls away, is about one in 20,000 people. The really frightening Ehlers-Danlos syndrome is the one that affects the lining of the blood vessels. The blood vessels have an elastic lining, and if the elastic lining fails, they begin to expand, causing aneurysms. The most frightening aneurysms are those of the main aorta, which in some patients can rupture, leading to sudden death. They can occur all over the body, however, and therefore cause all sorts of curious neurological or gastrointestinal symptoms depending on where the aneurysms are happening. That is about one in 100,000 people. There is even a dental Ehlers-Danlos syndrome, which causes the teeth to loosen and fall out. That is about one in a million people.
Given that there are many different types of Ehlers-Danlos syndrome, it is not surprising that it can be difficult to diagnose. To diagnose something, one has first to think of it. In my long career as an ENT surgeon, I saw very few cases, but I am certain that I missed many cases. I did some brief research into ear, nose and throat surgery and Ehlers-Danlos, and there is a particularly frightening situation that occurs in patients who need to have their tonsils out. Ehlers-Danlos syndrome is associated with this instability of the neck vertebrae—the cervical vertebrae; the axis and the atlas bones. When one does a tonsillectomy, one anaesthetises a patient and tips their head right back to open the mouth as wide as one possibly can. I saw a report from 2013 by Agarwal of a child who developed quadriplegia after a tonsillectomy. The tonsils were taken out, and when the child woke up, the arms and legs would not move, because the spinal cord had been compressed by the subluxation of the vertebrae.
Diagnosis is difficult, and we must first think of it. We should do what we can to educate people, particularly clinicians in medical schools and nursing schools, and even the general population. A debate such as this is certainly helpful in that respect. Research is essential. Specific genetic mutations are associated with many of the varieties of Ehlers-Danlos syndrome—sadly not the most common sort, but certainly many of the other sorts. The Minister may know that there is a proposal for universal genome sequencing of newborns and young people in this country. I do not think that future generations will have this problem of odd clinical symptoms accumulating over decades before somebody works out what has happened, because in future, people will be able to access their genomes. We will be able to predict what will happen.
However, just because we can predict it and identify the genes that are causing it, that does not mean that we will come up with magic treatments. We will certainly need to provide services for all the people with this condition into the future. Diagnostic pathways and well-organised arrangements for the clinical care of people with this presently completely incurable condition are essential.
Dr Danny Chambers (Winchester) (LD)
It is an honour to serve under your chairship, Ms Furniss. I thank the hon. Member for Cannock Chase (Josh Newbury) for securing this important debate. Many people have to come watch in the Public Gallery, and I do not underestimate how much effort that will have taken some of them. We really do appreciate them being here today. We have heard from everyone the frustration of having a relatively rare disease with non-specific clinical signs, meaning that so many patients have been waiting years and years, in awful situations, even to get a diagnosis. What we are equally upset about is that once they have a diagnosis, the support is not available to ensure that they live the most fulfilled life possible or even, in many cases, get the most basic care that they require. On that note, I commend the hard work of EDS UK in supporting and providing training for clinicians and healthcare professionals and campaigning for standardised guidance, improved NHS services and clinical pathways to meet the needs of EDS patients.
The lack of national policy has left a postcode lottery for EDS patients across the country. This is another NHS area suffering the frustratingly long diagnostic delays and lack of joined-up, multidisciplinary care that we see for certain conditions. That means that people are battling with the unexplained symptoms and pain of EDS all through childhood, and that those patients have often been told repeatedly that their tests are normal and their symptoms must be psychosomatic. It means waiting decades for an overarching diagnosis for multiple complaints and being stuck in a system that incorrectly believes that EDS is a very rare condition rather than a realistic possibility. I was interested to hear my friend the hon. Member for Bury St Edmunds and Stowmarket (Peter Prinsley) acknowledge that he probably has treated patients with this disease, having not recognised it, which is something that we are all guilty of sometimes with rarer diseases.
Diagnosis is only the first step. Care is too often fragmented or non-existent, and patients struggle to get a GP appointment in the usual 8 am scramble. As a result of fragmented care, those with EDS are left to manage their own symptoms, unable to access a holistic and collaborative point of care. For many, a huge part of the burden of living with EDS comes from the lack of awareness of the condition. Unlike the situation for more visible disabilities, employers, schools and even friends and family are too often unaware of the debilitating and changing nature of this condition. Negotiating accommodations or seeking disability benefits for a condition that is little understood and largely invisible presents a huge challenge.
People with EDS and those around them need clear guidance on the nature of the condition. A constituent of mine in Winchester, Dr Emma Reinhold, worked as a GP in the local community, where she became increasingly aware of EDS, with its commonly associated conditions, and how they were overlooked. That led to her development of the EDS toolkit, written in conjunction with the Royal College of General Practitioners and funded by EDS UK. That toolkit is incredible and has been shared all over the world. I first heard about it when I was knocking on doors and she popped her head out of her upstairs window to say hello. We spoke about the toolkit for about 20 minutes—me on the street and her up in her bedroom. She had been a GP in Winchester for many years and then she became seriously unwell with EDS, which was why she was at home. That was at the age of just 42. Like so many others, she had to stop working; eventually, she had no option but to take ill health retirement, so the NHS lost another GP far too soon.
One patient who Dr Reinhold told me about—I think it was through that window conversation—was a woman who was in her 70s when she finally got the diagnosis that she had been looking for over many years to explain her symptoms. This is a genetic condition that she had had since birth, but it took 70 years to ensure that she got the answers that she deserved and appropriate support for her many symptoms.
Emma’s open access toolkit on EDS—for anyone who is interested, it is worth googling—ought to be promoted enthusiastically by the Government as a means of promoting greater awareness on the part of all medical professionals, as well as better understanding and sensitivity on the part of everyone, so that we can ensure that all those with EDS and other hidden disabilities remain welcomed and cared for in education, the workplace and their day-to-day lives. Dr Reinhold explains that we need a co-ordinated, holistic approach to multisystem conditions such as EDS, rather than the current disjointed care that facilitates diagnosis falling into gaps between specialists, who do not always have the collective training to spot connections between apparently unrelated symptoms.
Patients need national leadership, so we urge the Government to address the policy gap by working towards joined-up, multidisciplinary care across primary and secondary services, as well as supporting and promoting the existing training for staff, to ensure that those with EDS can access the care that they deserve. EDS and HSD must be integrated into NHS service specifications and long-term condition strategies as a matter of urgency.
The Liberal Democrats want everyone with a chronic illness, including EDS, to have a named GP. That would improve their quality of care and allow better join-up between the range of services that they can access. We must champion the work of the Overlapping Illness Alliance and EDS UK to raise awareness of these often hidden conditions so that those in need of support are able to access it.
Before the last general election, Ministers from the former Government offered to meet EDS UK, and then the election was called so the meeting never happened. Will the Minister commit to meeting EDS UK and patients, including Dr Reinhold, to better understand what would be helpful to improve their outcomes?
Mr Andrew Snowden (Fylde) (Con)
It is a pleasure to serve under your chairship, Ms Furniss. Given that this is a debate about a health condition that has a crippling impact on people’s lives, I beg the indulgence of the House to be allowed a moment for a personal diversion. Today is also International Epilepsy Day, and epilepsy is a condition that also impacts many of our constituents. My sister, Kimberley, grew up coping with it as a young girl in primary and then secondary school. The condition causes uncontrolled fits and seizures. Sufferers cannot go about their daily life the same way, and there are many other unpleasant and personal side effects that I will not disclose because I do not want to embarrass Kimberley.
I saw at first hand the impact of living with that condition on my sister and the family. I distinctly remember the day that I was stood outside as she was effectively having her skull removed to have the cavernous angiomas that caused the epilepsy removed from her brain. The family went on a difficult enough journey with a well-known and well-established condition with pathways in place, so I can only imagine what it is like to go through something equally painful and life changing without clear pathways, a clear understanding and a clear recognition of what the condition is when talking to other people. My wife suffers with Crohn’s and colitis, which is an often misunderstood condition. People do not understand the daily pain and suffering.
I am grateful to the hon. Member for Cannock Chase (Josh Newbury) for securing this important debate and for the way he has brought the experiences of people living with EDS and CCI to Westminster Hall. We have heard the personal stories of Connor, of Hannah from Ashfield, and of other constituents who have contacted their Members. We also had an excellent explanation of the condition from the hon. Member for Bury St Edmunds and Stowmarket (Peter Prinsley). It felt like listening to a mini-podcast. In politics, we go to many events and debates without learning anything, but everyone in the Chamber can say that we learned something today.
This debate matters, because it speaks to the experience of people who too often feel unseen by the system. For too many people living with EDS, the challenge is not only the condition itself but the exhausting struggle to be recognised, to be diagnosed and to get the care and support that they need. Too many patients face long delays before diagnosis, too many encounter limited clinical awareness, and too many are left navigating fragmented care across multiple services. They are passed from one part of the system to another without anyone taking real ownership of their care.
Complexity in a patient should not mean confusion in the system, yet for many people with EDS, that is still the reality. For those living with CCI, the picture can be even more difficult. Patients and families describe serious problems not only in getting the condition recognised but in accessing the specialist assessments, imaging and care needed to understand what is happening to them. That can leave people facing delay, uncertainty and, in some cases, the sense that there is simply no clear pathway available to them in the NHS.
The consequences are serious. Delays in diagnosis can mean worsening symptoms, loss of mobility, deteriorating mental health and patients being left to navigate a system that is not designed with them in mind. The previous Conservative Government recognised the wider challenge facing people with rare diseases through the rare diseases framework and subsequent action plans. Those rightly focused on earlier diagnosis, improving awareness among clinicians and delivering more co-ordinated care. That was the right direction of travel, but it is clear from what we know, from what we have heard today, and from experiences raised repeatedly by patients and campaigners, that too many people still do not feel that the system is working for them.
The Government will point to neighbourhood health centres, multidisciplinary teams and personalised care plans. Those ambitions may sound encouraging, but for people with EDS and CCI, the key question is whether those commitments will translate into practical change: earlier diagnosis, clearer pathways and access to co-ordinated specialist care, including for those with the most complex presentations.
I hope that the Minister can address a number of important points. First, what steps are being taken to improve awareness and understanding of EDS among frontline clinicians, particularly in primary care? Secondly, if integrated care boards remain responsible for commissioning services, how will the Government ensure that patients do not face a postcode lottery in access to diagnosis, specialist input and ongoing care? Thirdly, on CCI, can the Minister set out what work is being done to improve clinical understanding, diagnostic pathways and access to appropriate imaging for those with more complex presentations? Finally, given that the Department has acknowledged significant delays to diagnosis, what assessment has been made of the gap between the Government’s ambitions and the lived reality of patients today?
People with rare and complex conditions should not have to become their own care co-ordinators just to be heard. People living with EDS and CCI deserve earlier recognition, better co-ordinated care and the confidence that the NHS will respond to complexity with competence and compassion.
The Parliamentary Under-Secretary of State for Health and Social Care (Mrs Sharon Hodgson)
It is a pleasure to serve under your chairmanship, Ms Furniss. I thank my hon. Friend the Member for Cannock Chase (Josh Newbury) for securing this very important debate and for his excellent opening speech, in which he took great care to set the scene for us. I appreciate that.
My hon. Friend has been instrumental in bringing national attention to the challenges faced by people living with Ehlers-Danlos syndrome and craniocervical instability. Last year my predecessor in my role, my hon. Friend the Member for West Lancashire (Ashley Dalton), met him and his constituent, Connor Edwards, who has suffered greatly, as we have heard, from the impact of these devastating conditions. Connor has faced immense physical and emotional hardship as he has tried to navigate symptoms linked to EDS and CCI, enduring pain, uncertainty and long waits for answers, as we have heard. His experience reflects what too many patients and families have told us: that the system can feel fragmented, that they are often left to join up their own care, and that the lack of clear pathways can add to an already overwhelming burden. I want to assure Connor and others in his position that their voices have been heard.
Dr Neil Hudson (Epping Forest) (Con)
I thank the hon. Member for Cannock Chase (Josh Newbury) for securing this important debate. I apologise, Ms Furniss, that I was not in the Chamber for the beginning of it; my shadow ministerial role in relation to the Department for Environment, Food and Rural Affairs meant that I had to be in the main Chamber at the start of this debate.
Will the Minister join me in paying tribute to patients with Ehlers-Danlos syndrome and craniocervical instability—including my constituent in Epping Forest, Natasha Little—for their bravery and their advocacy in calling for the Government and the NHS to recognise the needs of people with these conditions, in terms of diagnosis, treatment and long-term support? Hopefully, this debate can be a catalyst for change.
Mrs Hodgson
I thank the hon. Gentleman on behalf of his constituent, Natasha, and I will make sure that I include her name later when I come on to name everyone referred to during the debate. I also thank him for managing to juggle and spin all the plates that we have to deal with as Members by making time to come along to this debate.
I also thank all the other hon. Members who managed to make it to this very important debate. We heard contributions from my hon. Friends the Members for Hitchin (Alistair Strathern), for Glasgow West (Patricia Ferguson), for West Dunbartonshire (Douglas McAllister), and for Stratford and Bow (Uma Kumaran); from my right hon. Friend the Member for Hayes and Harlington (John McDonnell); from my hon. Friend the Member for Truro and Falmouth (Jayne Kirkham); from the hon. Members for Strangford (Jim Shannon) and for Ashfield (Lee Anderson); from my hon. Friend the Member for Blaydon and Consett (Liz Twist); from the hon. Member for Tiverton and Minehead (Rachel Gilmour); from my hon. Friend the Member for Bury St Edmunds and Stowmarket (Peter Prinsley); from the hon. Members for Winchester (Dr Chambers) and for Epping Forest (Dr Hudson); and from the spokesperson for the Conservatives, the hon. Member for Fylde (Mr Snowden).
I also thank the hon. Member for Fylde for sharing his learnings from the experience of his sister, Kimberley, on her journey in treatment for epilepsy. As he explained, epilepsy is a well-known condition, especially in comparison with the conditions that we are discussing today. That was a very strong point, which I thank him for making.
I will not repeat the detailed clinical descriptions of Ehlers-Danlos syndrome and craniocervical instability that other hon. Members have already set out very clearly, but I do want to recognise the real and often profound challenges that people living with these conditions, and their families, face every day. I want those individuals to know that I hear them, and that I recognise the challenges they face and the uncertainty and distress that many describe. Their experiences will shape the Department’s ongoing work as we consider how services can better meet the needs of people living with these complex conditions.
NHS England continues to strengthen clinically led pathways for people with hypermobility-related disorders, with an emphasis on non-surgical management, co-ordinated physiotherapy, and pain management and rehabilitation, as is consistent with the best available evidence.
In response to the question from the hon. Member for Strangford about the number of people affected by these conditions, the Getting It Right First Time programme is supporting more consistent assessment and management of complex joint and spine conditions, and assessment of the number of people affected, helping to reduce the unwarranted variation in treatment that particularly affects people with EDS. The programme has a strong emphasis on robust, evidence-based and personalised pathways. Through RightCare, integrated care systems are supported to commission evidence-based pathways for long-term and complex conditions, including improved access to community-based musculoskeletal care, which many people with EDS rely upon.
My hon. Friend the Member for Blaydon and Consett mentioned some numbers in her contribution, quoting a ratio of one in 250 and saying that between 1% and 4% of the population are affected. I would imagine that those are the ballpark figures, but the Getting It Right First Time and RightCare programmes, which I have just mentioned, will look into that in more detail.
How can we facilitate better care and support? We need better clinical education, clearer referral routes and a stronger emphasis on shared decision making. We also need to recognise the burden of chronic pain and fatigue that comes with these conditions, and ensure that people can access appropriate services, even when a definitive single diagnosis may still be evolving. Where the evidence is established, the NHS should provide timely, appropriate care. Where evidence is uncertain, we have a responsibility to be transparent about what is known, what is not known and what options are supported by clinical consensus.
Patient safety must always be paramount, and decisions about invasive treatments must be made within appropriate specialist teams, with robust clinical governance, multidisciplinary review and clear plans to follow up. EDS illustrates why integrated care matters. Pathways must connect primary care, community therapy services and specialist support so that patients do not have to tell their story over and over again, or navigate multiple disconnected services.
Stronger evidence is also imperative. The Government support health research through the National Institute for Health and Care Research, and we want to see well-designed studies that can inform future guidance and reduce unwarranted variation.
Josh Newbury
One thing that we have come across consistently is that a huge amount of research has been done internationally and, as many hon. Members have outlined, constituents are funding themselves to go abroad for treatment and surgery. As part of that work with the NIHR, would the Minister be willing to look at international best practice in this area, so that we can draw on the experiences of many other countries as they work out how best to treat this group of patients?
Mrs Hodgson
I am happy to recommend that international best practice is looked at, and I will take that on board. I will also come to the suggestion from my hon. Friend the Member for Blaydon and Consett about the international best practice that we can learn from in Wales.
Guidance matters too, and clinical guidelines and service specifications help reduce variation and improve quality. My hon. Friend the Member for Blaydon and Consett asked about NICE guidance. Where NICE guidance exists, the NHS is expected to take it into account, and where it does not, we should consider what other guidance can support clinicians and patients in the interim. I commit to asking the NICE prioritisation board, chaired by its chief medical officer, if it will look at the Wales pathways that she suggested when it considers updating NICE guidance.
My hon. Friend also asked about multidisciplinary teams. NHS England, along with the neurosurgery and spinal surgery clinical reference group, has not currently identified a need for an MDT. NHS England has established clinical networks for spinal surgery and neurosurgery, and we expect those networks to work closely to ensure that both cranial and spinal pathways are optimised.
I was also asked about a pathway by my hon. Friend the Member for Truro and Falmouth. There is currently no separate national diagnostic or treatment pathway for CCI because it is not recognised as a distinct NHS diagnosis, and there is no agreed national definition, validated imaging criteria or robust evidence base to support creating one. However, the Department recognises the concerns that patients have raised, and we are working with NHS England, clinical networks and patients’ organisations to improve pathway consistency by strengthening the existing framework, so we will look further into that.
Jayne Kirkham
I understand that the Department will be looking at it further, but will it be looking at it further with the intention to create a pathway for CCI?
Mrs Hodgson
Yes, I would imagine that if the Department looks at it and it is deemed necessary, that is what will happen. I am sure that my hon. Friend can follow up on that as time progresses.
I will cover the last couple of questions from hon. Members. My hon. Friend the Member for Truro and Falmouth, the hon. Member for Ashfield and my hon. Friend the Member for Stratford and Bow made points about access to care and ensuring that people do not fall through the cracks. EDS and CCI often require input from rheumatology, neurology, pain services, physiotherapy, genetics and primary care, and the 10-year health plan’s emphasis on integrated multidisciplinary care models will help to join up those pathways for the first time. That will reduce repeat referrals and conflicting advice, and patients feeling that they must be the ones to join up the system. We will hopefully see progress on that through the 10-year plan.
The hon. Member for Ashfield also asked about wheelchair services. In England, they are commissioned locally by ICBs and eligibility is determined by functional need, lifestyle and clinical assessment, not by whether a patient has a specific condition such as EDS or CCI. NHS England has developed a model service specification for wheelchair and posture services that sets clear expectations for timely assessment, appropriate prescribing and user-centred provision. That specification enables commissioners to organise consistent, high-quality services that meet individual mobility needs, including those arising from complex conditions such as EDS and CCI, so I was keen to give the hon. Member an answer to that particular question.
The 10-year health plan sets a clear direction for improving outcomes for people with EDS and those experiencing symptoms associated with CCI. The plan prioritises earlier diagnosis, better co-ordinated care and stronger multidisciplinary working across primary, community and specialist services, which are key issues consistently raised by patients and families. It promotes integrated, personalised support closer to home, reducing the burden of navigating multiple services. The plan also expands the use of digital tools, remote monitoring and personalised care planning to help people manage complex, fluctuating symptoms more effectively. Importantly, it commits to strengthening research, clinical education and system-wide awareness of overlapping, multi-system conditions, helping to ensure that people with EDS and CCI receive more consistent, compassionate and joined-up care.
Let me clear about what I can commit to as the Minister today. I will ensure that the concerns that have been raised are shared with NHS England to help identify where guidance, pathways, referral routes or clinical advice could be clearer and where good practice is already emerging internationally—as well as in Wales—that could be spread more consistently. Meaningful engagement with those directly affected must sit at the heart of our approach. Departmental officials are already in discussions with patient groups, and that ongoing engagement will be invaluable in shaping our understanding and ensuring that future policy is grounded in the reality of patients’ lives.
We will be asking the NIHR to consider how best to encourage further quality research in this area. It is already expanding its work on conditions with overlapping symptom profiles, including myalgic encephalomyelitis and chronic fatigue syndrome, and post-viral syndromes, and we want to ensure that future research programmes recognise the clear need for better evidence on diagnosis, management and outcomes for people with EDS and suspected CCI. I commit to continuing to press for a culture that is compassionate and evidence-based—one that listens to patients, avoids dismissal and false certainty, and supports shared decision-making.
Josh Newbury
I thank the Minister for her words, but I would add one point to her list, if I may, which is aftercare for people who have travelled abroad to have surgery. I understand that that is a tricky issue for the NHS, but we have heard consistently from several hon. Members today that their constituents have been rejected for any meaningful aftercare once they have come home, despite having a clear clinical need for it. Could she add that to her list to take back her officials?
Mrs Hodgson
I will commit to looking into that for my hon. Friend. Obviously, aftercare for surgery abroad is tricky—not for conditions such as this, but often for beauty related purposes—but I will take that on board and take it back to the Department.
Jim Shannon
I apologise if I missed the answer, but I asked about research and how we can create partnerships with universities, which are very keen to do that—Queen’s University Belfast is one example, but there are many others across the United Kingdom—and with medical companies that want to pursue cures, as we all want to see them do. The Minister may not have an answer today, but I would be very happy if she would come back to me, and to all of us, to show that we are pursuing that research opportunity to find the cure and help people if we can.
Mrs Hodgson
I did touch on research, but I did not specifically mention universities. I am pleased that the hon. Member got in another plug for the wonderful Queen’s University Belfast—he did that when we were in this Chamber the other day—and I will take his point on board. I thank him for that.
In closing, I return to the people at the heart of this debate: those living with EDS and CCI. Connor, Jo, Rebekah, Carley, Hannah, Stevie and Natasha have been named by their MPs today. They and their testimonies, as we have heard, are just examples of the many more people across the UK and Northern Ireland suffering from these terrible conditions. They are not asking for miracles; they are asking for clarity, consistency, safe care and to be treated with respect. They are asking for a system that joins up around them, rather than leaving them to piece it together alone. That is a reasonable ask, and one that we should meet.
Again, I thank my hon. Friend the Member for Cannock Chase for securing this very important debate. I look forward to working with NHS partners, clinicians and patient groups to ensure that people living with these complex conditions receive the timely, safe and compassionate support and care that they deserve.
Gill Furniss (in the Chair)
I call Josh Newbury, with two minutes to wind up.
Josh Newbury
I am grateful for the opportunity to briefly wind up; the fact that it must be brief shows the incredibly rich, emotive and deep debate we have had. Obviously, I will not be able to go through everybody’s contributions, but I thank all hon. Members who contributed. They raised the hugely complex issues that people with these conditions face, including mental distress, the need for joined-up care, the difficulties for people under the age of 18, the need to get wheelchair services and other provisions in order, the desperate need to be independent, the want to get back to work and to be able to live a fulfilling life, and the long delays to diagnosis. Members also raised the hope that we can draw from best practice in our own nation as well as overseas.
I also thank Members for highlighting issues including the lack of awareness and the postcode lottery that we have in this country, which hampers our ability to get to where we need to be. I am really encouraged, however, by the speeches we heard today, the Minister’s response, and the things that we can go away and work on together. The whole community will feel far more seen and heard as a result of this debate. I very much look forward to taking that well beyond today, as we hopefully do far better for this incredibly important group of people.
Question put and agreed to.
Resolved,
That this House has considered outcomes for patients with Ehlers-Danlos syndrome and craniocervical instability.
Prison Officers: Mandatory Body Armour
(1 day, 9 hours ago)
Westminster HallRead Full debate Read Hansard Text Read Debate Ministerial Extracts
Westminster Hall is an alternative Chamber for MPs to hold debates, named after the adjoining Westminster Hall.
Each debate is chaired by an MP from the Panel of Chairs, rather than the Speaker or Deputy Speaker. A Government Minister will give the final speech, and no votes may be called on the debate topic.
This information is provided by Parallel Parliament and does not comprise part of the offical record
Sir Julian Lewis (New Forest East) (Con)
I beg to move,
That this House has considered the potential merits of mandatory body armour for prison officers.
May I begin by thanking all the Members who have taken the trouble to attend and hopefully speak in this important debate, and also the Minister and shadow Minister for their anticipated contributions? Members of all parties in the House will wish to put on the record our appreciation for prison officers up and down the country, who work tirelessly and courageously to protect our society. Let us especially pay tribute to Claire Lewis, a brave constituent of my friend the hon. Member for Washington and Gateshead South (Mrs Hodgson), the newly appointed Under-Secretary of State for Health and Social Care, who we heard in full voice a few moments ago on another debate topic. She rightly drew attention to Claire’s work on 18 June last year.
After suffering a horrific assault, Claire set up a petition calling for anti-stab and anti-slash protective gear to be made mandatory for all prison officers. It achieved over 32,500 signatures. She had been severely stabbed in the back with a broken bottle while working on a supposedly less risky general population wing at HMP Frankland as a prison officer in 2010. In her own words, the attack left her with
“life-changing physical injuries and deep psychological toll…to this day.”
I understand Claire is watching at home today, so this is a good opportunity to acknowledge her remarkable commitment and dedication in turning such a dreadful experience into an inspirational campaign for change. No one should be subject to needless vulnerability while doing his or her job. Prison officers work constantly to safeguard society from some of the most dangerous and violent people. They are entitled, in return, to expect from us the maximum practicable protection from attack.
Sadly, Claire’s experience is no isolated incident. According to The Independent, the number of assaults on staff in adult prisons in England and Wales nearly trebled in the decade from 2014 to the end of 2024, from 3,640 to 10,605.
Jim Shannon (Strangford) (DUP)
I commend the right hon. Gentleman for securing this debate. The figures in Northern Ireland have also increased in recent years, with 96 attacks recorded in 2024, up from 59 in 2023 and 66 in 2022, reflecting rising safety concerns in Northern Ireland’s prison system, as he has referred to. It is attributed to factors such as overcrowding and higher prison populations. Does he agree that if we are to address the issue of prison officer safety, we need to address the issue of overcrowding and higher prison populations? Every prison officer should have access to body armour to ensure their safety.
Sir Julian Lewis
Yes, indeed. No debate in this Chamber or the main Chamber would be worth while without a typically relevant contribution from the hon. Member for Strangford (Jim Shannon).
The rise that I quoted earlier equated to 122 attacks on staff for every 1,000 inmates on the prison estate. Such a level of violence has inevitably brought into question the safety and adequacy of the current protective equipment available to prison officers at work. Only last year, three officers were viciously attacked in a particularly serious incident at HMP Frankland, the same prison where Claire was badly wounded.
The full implications of this unacceptable deterioration have yet to be learned, though significant progress was made last September, when the Justice Secretary announced during a visit to Belmarsh prison that 10,000 more staff would be given stab-proof vests and 500 tasers would be supplied to trained personnel. Although those steps are welcome—they would have helped protect Claire in her prison—they go only part of the way. The extra 10,000 vests will provide a stab-proof garment for every prison guard working in high-security facilities, but even with body armour being made mandatory for prison officers working in close supervision and separation centres, too many at-risk staff remain without protection.
Any prison officer working on any wing of any prison can be attacked. Therefore, any prison officer working on any wing of any prison deserves to be protected from violence while trying to do his or her job. Yes, progress has been made, but as long as any prison officers lack adequate protection and remain vulnerable to attack, there is still work to do.
High levels of violence coupled with a lack of protective equipment will undoubtedly serve as a recruitment disincentive for potential prison officers. That must be remedied to ensure that our justice system continues to function and our society remains safe. Prison officers will always face challenges, often in trying circumstances. It is up to us to minimise the risk of attack, if we expect people to volunteer for such a vital, though difficult, career. It is also a matter of justice and fair play. We cannot expect to be protected by brave prison officers if they do not feel that appropriate safety measures are in place.
If the principle of providing protective body armour to all prison officers is accepted, we must ensure the adequacy of the equipment itself. We must listen to and draw upon the experiences of those who have already been issued with protective equipment to make certain that it meets the highest safety standards. In 2024, more than half of police officers and staff in England and Wales said that their uniforms were “unfit for purpose”, restrictive and causing health problems, according to the first national police uniform and equipment survey ever undertaken. Furthermore, that survey revealed alarming health consequences, with 44% of men reporting muscular pain, which was often linked to body armour or heavy equipment, and women reporting that body armour failed adequately to accommodate female anatomy. Ultimately, 62% of male and 85% of female respondents reported at least one physical health condition as a result of equipment flaws.
Lessons must be learned and procurement tailored accordingly, in both senses of the word. As well as its protective function, body armour must be light in weight, not impair mobility and remain comfortable if worn for lengthy periods. I understand that Claire Lewis has identified at least one designer and manufacturer of stab vests and other protective clothing that she believes to offer enhanced protection against blunt force, significantly reducing the risk of injuries from punches, kicks and strikes from improvised weapons. Clearly, market research and objective evaluation will need to be done.
The argument is twofold: we should ensure that all prison officers have comparable protection from attack by prisoners, and the selection of protective equipment must be right rather than rushed. Not only is this morally sound, but it will save costly claims later on from individuals suffering health consequences from faulty equipment.
I conclude with the following questions for the Minister, to whom I have given advance notice—I thank him for his accessibility in this matter. First, does he accept that, regardless of which prison wing an officer works on, he or she deserves protection from violence? Secondly, if that is agreed, will the Government seriously consider rolling out mandatory body armour to all prison officers in all prisons? Finally, may we have the Minister’s word, here and now, that any new body armour procured will be of the highest specification, to avoid causing physical problems for male and female officers further down the line?
Several hon. Members rose—
Mr Clive Betts (in the Chair)
Order. Six Members wish to contribute to the debate and we have about 50 minutes, so people can do the sums on that—it is about eight minutes maximum for each speech.
Andy Slaughter (Hammersmith and Chiswick) (Lab)
It is a pleasure to talk about this very important matter under your chairmanship, Mr Betts. I suspect there will be quite a degree of agreement across the House.
The first thing that struck me was a quote from some evidence that the Prison Officers’ Association submitted to the Lords Justice and Home Affairs Committee last year:
“prisons are inherently violent institutions to live and work in because they are places where large numbers of often violent criminals are forced to stay against their will”.
That may seem rather obvious, but if it is true, and I think it is, then we need to take every step to minimise the levels and seriousness of violence. This would not be tolerated in any other profession or environment, and it should not be tolerated in prisons. I pay tribute to the courage and fortitude of all our prison officers, who have to put up not just with assaults, but with risk and vulnerability every day—10,000 assaults a year, or 30, including three serious assaults, a day. That is not acceptable.
As the Chair of the Justice Committee, I routinely receive the chief inspector’s reports, as well as urgent notifications when there are particular problems, and I will refer to two that I received in the past few days. One relates to HMP Woodhill, of which the chief inspector says:
“The prison was not safe. Rates of violence were very high and at the time of this inspection, only Swaleside (also subject to a UN) had a higher rate of violence among similar prisons. The rate of serious assaults on staff was the highest in the long-term high secure estate and around a third of all violent incidents involved the use of weapons. Unsurprisingly, 61% of prisoners said they had felt unsafe at some point.”
On Swaleside, the other prison referred to there, the chief inspector states:
“Our inspection of Swaleside, a category B training prison on the Isle of Sheppey, revealed a prison in disarray, with the lowest scores in my five years as chief inspector…levels of violence were some of the highest of any prison in England and Wales and assaults on staff, many of which were serious, had more than doubled since our last inspection in 2023.
Much of the violence had been driven by the large amounts of drugs being brought into the prison by drones. Drug debts and gang rivalry were often the cause of assaults, and many prisoners were routinely making and carrying weapons.”
I appreciate that that rather dystopian description is not typical of every prison in the country, and certainly not of every prisoner. However, if that is the level of harm, then we have to give proper protections to prison officers, including body armour. In principle, I support that, and I pay tribute to the right hon. Member for New Forest East (Sir Julian Lewis) for securing this debate just before we pack up for the Easter recess. I am glad, as he is, to see so many people here, because it is a vital issue.
John McDonnell (Hayes and Harlington) (Lab)
I declare an interest as an honorary life member of the Prison Officers Association. I also apologise as I am trying to represent my constituents in about four different debates today.
One of the issues that the POA has consistently raised is the nature of the people it is dealing with at the moment. Many prisoners have severe mental health problems. The POA says that they should not be in prison; they should be in specialist units, as should those who are drug dependent. Recently, there have been examples of the POA having tried and failed to negotiate safe practices with management. Limited action has taken place and the union has been dragged through the courts because of the ban on it being able to withdraw its members’ labour. That has to be addressed; there have to be some basic protections. As well as body armour, which I support, there has to be the protection of workers having the ability to take industrial action and negotiate a safe working place.
Andy Slaughter
I thank my right hon. Friend for all the work that he and other Members present do in supporting the POA and making sure that its voice is heard. It is often the case with prisons that out of sight is out of mind. Both because of the conditions in prisons, which are deplorable in many cases, and in particular for the welfare of staff, it is important that we speak loudly on this subject.
The basic principle of this debate is absolutely right and should be followed through, but I have three qualifications to make. First, I believe—we will no doubt hear this from the Minister—that the Government have done a substantial amount more to address this issue. Body armour was first available in particularly dangerous institutions and is now available in all high-category prisons. That is a huge improvement, which has been acknowledged on all sides, including by the staff. It is in the lower-category prisons where it is not routinely available. That may be where we are moving to, but I want to acknowledge what has been done so far because it is a significant development. Both the current and previous Lord Chancellors have been clear on their intention to give the upmost protection to staff.
Secondly, if there is a danger that, through the widespread, customary, routine use of body armour, we will get into a mode of accepting levels of violence. Violence should never be acceptable in our prisons. Yes, the first priority is to keep staff safe, but beyond that, we have to do something about the appalling conditions in prisons. My right hon. Friend the Member for Hayes and Harlington (John McDonnell) mentioned mental health; we could equally talk about the chronic levels of drug addiction, organised crime and overcrowding, and the conditions in prisons, all of which create an environment in which violence thrives. That is what I worry about.
The Prison Reform Trust has said:
“The real drivers of prison violence—unsafe conditions, lack of purposeful activity, and poor mental health—can only be addressed through improved safety, decency, and respect. That means better staff training, supporting leadership development, and the political will to invest in prison conditions and reduce demand for drugs.”
I hope that view will be echoed on all sides. Rolling out body armour across the entire prison estate may be the right thing to do, and it may be that what has been done so far needs to be improved upon, but it should not hide the systemic, dangerous problems and conditions in our prisons, which are the result of decades of neglect, overcrowding and failure to provide decent standards for prisoners and for staff, who have an incredibly difficult job.
Liz Saville Roberts (Dwyfor Meirionnydd) (PC)
It is an honour to speak under your chairmanship, Mr Betts. I congratulate the right hon. Member for New Forest East (Sir Julian Lewis) on securing today’s debate. For more than a decade, I have had the honour of being the co-chair of the Justice Unions Parliamentary Group, during which time I have heard first-hand accounts, some of them grim, visited many prisons and heard from prison officers, the Prison Officers Association and others about the violence and how deeply it affects people.
The Prison Officers Association has been warning for years that its members’ health and safety is in practice a low priority for the Prison Service—that is the reality of what they experience. It has been difficult for the union, for a long period, to improve the safety of prison officers. We must now find a way to change that, but that has been their experience, and some aspects of their experience have yet to be addressed in any meaningful way.
Six years ago, I helped to launch the first Safe Inside Prisons Charter, developed by the Joint Unions in Prisons Alliance, a coalition of 10 national trade unions representing the majority of prison staff, including the POA. The third updated version of that charter was published last year, but the Prison Service has yet to adopt its common-sense recommendations. I press the Minister to tell us why it has not done so. A vast majority of unions that are present in prisons have adopted it and saying, “Every union needs to adopt it,” as a reason not to take it on board is not a reasonable rationale.
It is important to highlight how significantly violence in prisons has increased over the last 15 years. We have heard already how the rate of prisoner-on-prisoner violence has risen from around 130 assaults per 1,000 prisoners in 2013 to 240 last year, nearly doubling. The rate of prisoner-on-staff violence has also soared from roughly 40 assaults per 1,000 prisoners to just under 120, tripling in just over a decade. I also have a snapshot from Wales. In 2024, assaults on prison staff rose 22% on the previous year, with a total of 536 attacks. At HMP Berwyn, the nearest prison to my constituency in north-west Wales, there was an increase in that year of 42%. Unsurprisingly, recruitment at that prison in Wrexham has long been challenging.
In any other workplace, this would be all over the news as a national emergency, but because this is about prison staff, who are effectively hidden in their work behind high walls, the POA tells me—and I have seen this—that it is treated as just business as usual by the Ministry of Justice, as if this is what people should expect in this workplace.
The POA gave evidence to the Justice and Home Affairs Committee in the other place last year, in which it described being taken to the High Court by the previous Government after two horrific attacks on staff at HMP Lindholme in South Yorkshire. One of those attacks saw a prison officer strangled to the point of unconsciousness, but when officers at the prison told the governor that the prison was unsafe and demanded immediate changes, this was put into effect with the operation of a controlled lockdown to restrict the regime, and the MOJ responded by dragging them into court. Something is very wrong when the response to such extreme workplace violence is to punish those very workers at the sharp end of the assaults.
At the High Court, what shocked me most about the POA’s evidence is that the Government barrister, according to media reports at the time, made the argument that although the violence at Lindholme was “deeply regrettable”, it was—once again—
“business as usual in a prison”.
The POA was dragged back to the High Court again the following year, also for standing up for the health and safety of its members. Because of the permanent injunction that the Government have against the union from taking any form of industrial action, the POA was fined a six-figure sum for what the court called the illegal inducement of members to take action.
Even more outrageous were the threats made in court by Government lawyers to imprison the POA’s leadership for simply protecting their members, meaning that prison officers were threatened with jail for protecting other prison officers. That is the context in which we are talking about the steady increase in violence and the feeling in the profession that there is a lack of response.
I wish I could say that the direction under the Labour Government was significantly different, but evidence suggests that we must question that. When officers at HMP Liverpool took issue last year with the governor’s changes to the prison regime—changes that he himself admitted to the Justice Committee carried an expectation of leading to a potential increase in violence—he cut off direct contact with the local POA committee and restricted facility time, threatening members with disciplinary action and dismissal simply for exercising their health and safety rights.
It is clear to me from talking to the POA many times that the blanket ban on its members from taking any form of industrial action is one of the key factors in prison officers’ discontent. They sense that they are impotent and unable to change their circumstances. The European Committee of Social Rights recently ruled that the UK is in breach of its obligations under the European social charter because of that very ban. It said that
“the blanket ban on prisoner officers striking cannot be deemed proportionate and thus goes beyond the limits permitted by Article G of the Charter.”
The committee concluded that
“the situation is not in conformity with Article 6§4 of the Charter on the ground that that there is an absolute prohibition on the right to strike for the prison officers.”
That is an important ruling, and I urge the Minister to consider its implications seriously, especially in the light of the POA’s current case before the European Court of Human Rights.
Let me go from one aspect of safety to another: back to body armour. The roll-out of stab-proof vests in the high security estate is of course to be welcomed, but it needs to be the norm. The POA is calling for that vital equipment to be mandated across the entire closed male estate. I urge the Minister to take seriously other demands, such as replacing the cumbersome and impractical utility belts, which are weighed down with equipment, with lightweight slash-proof vests, which redistribute weight and can prevent injuries, especially for female officers.
According to the POA, the last Government objected to utility vests because they look too militaristic and intimidating, but surely that is yet another example of the low priority given to prison officer health and safety. In the circumstances, those were not credible objections. Protection at work for prison officers means more than just the right personal protective equipment; it also means the legal protections that almost every other worker enjoys, and specifically the right to take industrial action as a last resort. The last Government treated prison officers as expendable. I urge this Government not to make the same mistake.
Brian Leishman (Alloa and Grangemouth) (Lab)
It is a pleasure to see you in the Chair, Mr Betts. I thank the right hon. Member for New Forest East (Sir Julian Lewis) for bringing this very important debate to Westminster Hall.
Even though the prison system is largely a devolved matter, I would like to speak about things from a Scottish perspective. I regularly speak about prison officers’ working conditions in this place, in both Chambers and as a member of the Justice Unions Parliamentary Group.
I am fortunate to know many serving and recently retired officers from HMP Glenochil in my constituency. Officers at Glenochil and every other prison in Scotland do remarkable work every day for pay and conditions that, in all honesty, do not match their skills, commitment and efforts. The 3.5% pay award that officers are due to receive this coming year is just not enough—not when inflation is sitting at 3% and is projected to rise with ongoing global war and conflict, increasing energy costs and a cost of living crisis that shows no sign of stopping. Prison officers deserve better—all workers deserve better. No one should become poorer. When we factor in the fact that those officers are expected to work until they are 68, which is ludicrous for any worker, and when we look at the mental and physical demands of being a prison officer, we see that it is unrealistic, unjust and utterly unacceptable.
Let me talk briefly about the psychological strain of the profession. No amount of body armour will assist an officer who has to deal with criminals who are looking to gain psychological advantages over them and trying to ingratiate themselves, ultimately to manipulate the officer and to garner information. It is a relentless mental attack, all done to assert power, control and dominance over the officers.
Many officers have said that the mental strength and fortitude necessary to be always in a heightened state of alertness is incredibly exhausting. There is also the physical element of working on landings. It is absolutely ridiculous to ask someone in their mid to late 60s to cope with the demands of going up against a prisoner who could be 40 to 50 years younger. Common sense says that that just should not happen.
Why are we considering body armour provision as a solution? Scotland’s prison population is the largest we have ever had. Overcrowding is making everything much more difficult. It has an impact on officers’ ability to look after prisoners safely, and a negative impact on the likelihood of effectively rehabilitating offenders. We simply do not have enough prison officers to safely manage a prison population of this size.
Alongside the record numbers, the complexity of the prisoner demographic means an urgent need for extra prison spaces, increased investment in staff training, a staff recruitment drive and an overall longer-term strategy that will define the purpose of our prisons. With much of our prison estate in dire need of investment, many facilities are not at the standard necessary to keep officers and prisoners safe. Facilities that are outdated and unhygienic must be addressed. No one should go to their workplace if it is in a decrepit condition.
Our prison officers pride themselves on their professionalism. They are rightly concerned about conditions for the prisoners that they are tasked with keeping safe, but also with helping to rehabilitate. If these issues are not tackled, the strain on our prison system and on the officers who staff it will only keep growing, leaving our prisons much more dangerous and rehabilitation much less likely.
Overcrowding, squalid conditions and increases in prison violence can be attributed to the political cuts of austerity. Rising numbers of assaults on officers have led to retention issues. With so many officers leaving the service, that means an exodus of vital skills and expertise. This is no anecdotal tale. The Prison Officers Association has stated that since 2010, over 116,000 years of cumulative prison officer experience have left the UK wide service.
Time is pressing, so I will lay out some questions for the Minister to address either today or, if it is more convenient, by letter. On body armour, does he agree with the POA that stab-proof vests should be mandated across the entire closed adult male estate, not just separation centres and close supervision centres? Does he agree that slash-proof vests should be available to all prison officers, wherever they work? Does he accept that one of the drivers for increased prison violence is the amount of experience that has left the Prison Service? Can he name another profession that encounters such high levels of violence, where it is so normalised and where workers are expected to work until they are 68 years old? Does he accept that prison officers working until 68 is unrealistic and that the unjust retirement age is a factor in the staff recruitment and retention issues in the service? Finally, will the Government do the right and sensible thing and lower the retirement age for prison officers?
Esther McVey (Tatton) (Con)
I thank the Backbench Business Committee for granting this debate, and the hon. Member for Washington and Gateshead South (Mrs Hodgson), who instigated it and who does so much in this area. I also thank my right hon. Friend the Member for New Forest East (Sir Julian Lewis) for securing the debate, and you, Mr Betts, for chairing it.
Styal prison, in my constituency of Tatton, is a closed female prison and young offenders institution with approximately 450 prisoners. Violence levels there have increased significantly: 189 assaults on staff and 167 assaults between prisoners were reported in the 12 months to March 2025. That, in itself, tells us that greater protection must be afforded to prison staff. In one horrific incident, a prison officer in Styal, Chloe Armstrong, was left with a tennis ball-sized lump in the back of her head, a swollen face and black eyes after she was repeatedly kicked and punched for just delivering a prisoner’s lunch. What a horrific attack as a thank you for a lunch.
Nationally, violence against prison staff is up. Assaults against prison staff have almost trebled in the last decade. In the 12 months to March 2025, there were more than 10,500 assaults on staff, a record high: 26% involved improvised weapons, while the rest involved blunt force or liquids such as hot oil or boiling water. It should come as no surprise that the rate of prison officers leaving each year is more than 13%—a very turnover rate that no doubt leads to understaffed facilities and further exacerbates the safety risks to both staff and prisoners.
The reality is that life as a prison officer, even at the best of times, is extremely challenging. They must confront and contain unthinkable situations almost daily. To do the job, they must possess a level of bravery that most of us simply do not have. But to do the job without proper protective gear is beyond belief.
If staff do not feel safe at work, it will be hard to attract and retain new employees. We know from a recent survey of officers by the POA, the largest union of prison workers, that officers want extra protection. Who wouldn’t? Some 74% want to be issued with slash and bite-proof vests. Yes, the Government have made body armour mandatory for officers working with the most dangerous offenders, and the news last year that 10,000 more officers in high-security facilities would get stab vests and tasers was greatly welcome, but the Minister should not be surprised that with the increase in violence against staff, I and other Members would like to see the Government go further.
Protective equipment and clothing should be provided irrespective of the category of prison. Sadly, violence can happen in all types of prison. Figures from the Ministry of Justice and His Majesty’s inspectorate of prisons consistently show that local prisons, which are mostly category B rather than A—the high-security ones—have extremely high numbers of assaults. Although the lower categories of C and D have less violence, the risk can still be considerable, and it is rising.
I will end by quoting the retired prison officer Claire Lewis, who was mentioned by my right hon. Friend the Member for New Forest East. She was brutally stabbed in the back while on duty—an entirely preventable incident that left her with life-changing injuries. Claire said:
“Protective clothing is not a luxury—it’s a basic necessity. It can mean the difference between an officer walking out of their shift or being carried out. Prison officers deserve to feel safe.”
I have just read—this must really be a slap in the face for prison officers—that killers and terrorists have just got £1 million in compensation, plus legal fees, for being segregated alone in a prison, which was viewed as unlawful and in breach of their human rights. Surely money cannot be spent on violent criminals for their human rights when we are not looking after the human rights of our officers, who are there to protect and look after those prisoners, and who do such a good job for us in society.
Mr Clive Betts (in the Chair)
The right hon. Lady had the courtesy to advise me in advance that she would have to leave shortly after 4 pm, so I think it was reasonable to allow her to speak in the debate.
Grahame Morris (Easington) (Lab)
It is a pleasure to serve under your chairmanship, Mr Betts, and to follow the right hon. Member for Tatton (Esther McVey). I congratulate the right hon. Member for New Forest East (Sir Julian Lewis) on securing the debate.
Like my hon. Friend the Member for Alloa and Grangemouth (Brian Leishman), I declare my membership of the justice unions parliamentary group, which hears quite regularly from the Prison Officers Association. My region, the north-east, has seven prisons, and I have regular contact with prison officers and their representatives. I have visited all seven prisons in recent years and have heard at first hand the problems, challenges and dangers that prison officers face daily while they protect the public. I place on record my admiration for the professionalism and bravery of prison officers and prison educators in the face of extreme adversity. I pay tribute to all prison staff, who have to deal with often violent and dangerous criminals so that we do not have to.
The horrific attacks on prison officers in the high-security estate—including HMP Frankland, which is near my constituency and in which quite a number of my constituents work—were shocking. They were a wake-up call for the Government and the Prison Service to take action, as the Prison Officers Association has long called for. I acknowledge the Minister’s active involvement and willingness to engage on this and other issues, and I welcome the roll-out of stab-proof vests across the high-security estate, but I question why it took such an appalling security failure for the Government to listen to the union properly. I hope that Ministers will not make the same mistake again by ignoring calls from frontline workers. It is not just the high-security estate; frontline officers more widely say that they need body armour. Prisons have become much more violent over the past decade or so.
We must try to understand why prisons have become so dangerous. There is a degree of consensus on the issue across the Chamber, but we must not forget that the austerity cuts saw a quarter of prison officers leave the service. That triggered a vicious circle of violence and collapsing experience. As prison officer experience goes down, violence goes up; as violence goes up, more officers leave and experience falls still further. It is a vicious circle. Prison officer experience really matters, as I am sure the Minister understands.
I know it is a bit predictable, but every year I table a question about the current cumulative experience of frontline prison officers. My hon. Friend the Member for Alloa and Grangemouth, my good friend, referred to the latest figures for 2025, which show that more than 116,000 years of cumulative prison officer experience have been lost since 2010. That is an awful lot of prison officer experience. Jailcraft is not something that can be learned in a book or from a training video; it comes with the experience of years served in the Prison Service. It has drained away from our system because of the political choices of the previous Government.
This is a complex problem, and there is no single solution. Body armour is part of it, but it is not just about safety equipment. The recent announcement of a 3.5% pay increase for prison officers, while MPs receive 5%, has caused some upset and has been derided by the Prison Officers Association in the face of the ongoing cost of living crisis that its members face. It will take serious investment—a full return of the many millions taken from the Prison Service as a result of austerity, and then more—to bring violence down to its previous level. Prison officers who bear the brunt of this violence must be properly protected. The bottom line is that if the Prison Officers Association says that its members need stab-proof vests in prisons, who are we to say that they do not?
I understand that the union wants slash-proof utility vests, which the right hon. Member for Tatton mentioned, for officers in other prisons, such as open prisons and the female estate, so they do not need to carry such heavy equipment on their belts, which causes discomfort, health issues and even injuries, as we have heard. I urge the Minister to listen to frontline prison staff on this issue too. Proper personal protective equipment is not enough by itself; tackling prison violence will take a multitude of actions. We need a broad-spectrum antibiotic—there is no magic bullet.
It is easy to criticise, but in the previous Parliament I introduced my Prisons (Violence) Bill, which sought to establish a duty on prison management, in public and privately run prisons, to take all reasonable steps to minimise violence in prisons. We do not have time to go into it now, but in brief, my Bill proposed setting targets for staffing levels, staff retention, experience and so on, as well as for reducing assaults against staff and prisoners, and then penalising bosses if the targets were not reached. The proceeds from any financial penalties would be used to fund extra therapies and treatments for staff assaulted at work, and targeted pay awards to encourage retention in failing prisons. Of course, it is no surprise that my Bill did not make any progress under the previous Government, but I hope that the Minister will consider some of the ideas I raised with an open mind and engage with the logic behind them.
More importantly, I hope that the Minister will take seriously—I know he will—the concerns of his own frontline staff, and listen to his workers when they say they need better protection now. Prison officers protect us, the public, every day of their working lives. It is up to us, in Parliament, to make sure they are properly protected in return.
Jayne Kirkham (Truro and Falmouth) (Lab/Co-op)
It is a pleasure to serve under your chairship, Mr Betts. I thank the right hon. Member for New Forest East (Sir Julian Lewis) for securing the debate and for writing to tell me it was happening—otherwise I would not have known.
I am here mainly because I have a very good friend who was a prison officer. A number of years ago, he received an award for exceptional service. He took along his young daughter, and I think the video of what happened must have been shown, because afterwards she begged her dad to give up that job, and he eventually did. That stayed in my head for a very long time—what she saw had happened in the prison that day—so I have taken an interest in the issue since.
I have been in this place for only 20 months, but I have met the justice unions parliamentary group secretary and gone to HMP Wandsworth. When I went round the prison, it was obvious that the cuts over the last decade mean that a large number of officers have gone and there is a lack of experience on the landings. There are now perhaps just half the number of officers.
When I was there, the alarm went off, and it amazed me how all the officers literally ran towards the violence—that is what they have to do—and locked all the doors behind them. It was an education for me. There are examples of good practice at Wandsworth: I saw the new neurodivergent wing, which was working extremely well. There are positive things, of course, but what I saw there stayed with me. The officers and the governor are doing the best they can with what they have, but the lack of experience, and the fact that that will need to be rebuilt over a number of years, is telling.
Like a number of other hon. Members, I am asking the Minister to mandate stab-proof vests across the entire adult male closed estate, not just the separation centres. When the new uniforms come out from August, the heavy belts could be replaced with the more practical vests, so that the weight can be distributed around the prison officer’s body.
Mr Clive Betts (in the Chair)
We move on to the Front Benchers, who are entitled to 10 minutes each. I hope that we can allow at least two minutes for Julian Lewis to wind up at the end. I call the Liberal Democrat spokesperson.
Clive Jones (Wokingham) (LD)
It is an honour to serve under your chairship, Mr Betts. I thank the right hon. Member for New Forest East (Sir Julian Lewis) for securing this very important debate.
Our prison system has been pushed into a deep crisis by years of neglect and mismanagement under previous Governments. Prisons are overcrowded, understaffed and unable to properly rehabilitate offenders. Attacks on prison officers, including on three officers at HMP Frankland last April, shine a light on the consequences of a prison system left overstretched and under-resourced by previous Governments.
I know at first hand the impact that the stressful environment can have: my dad was a prison officer for nearly 20 years, following his 22 years of service in the Army, which included serving in the second world war. My dad worked as a prison officer at Maidstone, and then at the infamous Dartmoor prison in Devon where there were notorious criminals including Frank Mitchell, who was involved with the Kray twins. My dad then moved to Albany prison on the Isle of Wight, which became a maximum security prison. He was looking after many IRA criminals, which made the job particularly stressful as they regularly rioted and caused problems. He then moved to Reading prison, which is how I came to live in the Wokingham area.
During his career, my dad was under immense stress and pressure, often working very long hours with others to look after notorious, violent criminals on a daily basis. From my dad’s experience, I know that stress and safety fears were constant concerns that wore him and many others down.
Violence is unacceptably high in prisons. There is an average of 28 assaults on staff every day in the prison system. In the 12 months to March 2025, the rate of assaults was 7% higher than in the 12 months to March 2024—a new peak of 10,568 assaults on staff. The crisis of severe overcrowding in the prison system is clearly taking its toll on staff. In 2024, England’s prisons lost almost 150,000 working days due to mental health related sickness—a 44% increase since 2019.
What support do prison officers get? According to the Ministry of Justice, all prison officers have access to mental health support, including a 24-hour helpline, but the Prison Officers Association has said that it has consistently called on the service to fund specialist on-site mental health support. It is clear that prison officers do not feel properly supported at the time when they need it most: when they are actually at work.
The crisis in the prison system is also linked to serious staffing issues. The Justice Committee found that the prison operational workforce has struggled with recruitment, retention and sickness in recent years. As of 30 June 2025, there were 22,702 band 3 to band 5 prison officers in post, with a leaving rate of 11.6%. Despite the recruitment of new officers, the number of prison officers decreased by 4% on the previous year. Those are signs of a workforce seriously struggling to cope in a crumbling prison system.
On top of that strain, in September 2025 it was reported that hundreds of prison officers recruited from abroad may lose their jobs and be forced to return to their homelands due to changes to the Labour Government’s immigration policy. That shift came after the Prison Service began sponsoring skilled worker visas for overseas applicants to address staff shortages. To put that in numbers, according to the Prison Governors Association, more than 1,000 prison officers—nearly 5% of the workforce—have a limited right to work in the UK and are reliant on a skilled worker visa to continue. If that solution to the staffing crisis is in danger, the Government need to do more to protect prison officers and provide the support they need so that they do not leave the service.
Ministers have said that they will make new protective vests mandatory in close supervision centres and separation centres, which hold the most dangerous offenders. They then said that more evidence was needed before rolling out the vests to prison officers. It is a welcome step forward that the Lord Chancellor recently announced a big increase in protective body armour for frontline officers, but more needs to be done to ensure that all prison officers have the protection they need to do their job safely and effectively. Having the relevant protective vest will help to improve prison officers’ mental health.
No one should feel unsafe when fulfilling their professional duties, working in a prison, and of course, any changes must always be made in consultation with the officers themselves. Finally, I thank all prison officers, past and present, who have worked tirelessly to protect their colleagues and the public, and who have supported the rehabilitation of prisoners and offenders into our society.
Dr Kieran Mullan (Bexhill and Battle) (Con)
It is a pleasure to serve under your chairmanship, Mr Betts. I congratulate my right hon. Friend the Member for New Forest East (Sir Julian Lewis) on securing this important debate. I also thank the hon. Member for Washington and Gateshead South (Mrs Hodgson) for the work that she has done in relation to her constituent. I pay tribute to Claire. She has taken what must have been a horrific experience and, rather than letting it overwhelm and subdue her, used it to empower herself to have a voice on this issue for the benefit of others.
I record my thanks to prison officers and prison staff across the country. They go to work in difficult, dangerous conditions, doing a job that most of us would struggle to imagine. I come from a public service background—I was a doctor, I volunteered as a policeman, my mum was a nurse and my dad was a policeman—and I have always been struck by the contrast in our public discourse. It is interesting that we have an awareness of, and give our recognition to, those sorts of public emergency service workers but we do not do the same for prison officers.
Prison officers do a job that is just as important, if not more important, and under more difficult circumstances. I know that multiple Secretaries of State for Justice have tried to address that with initiatives to change the public’s perception and help them recognise how important that work is. I absolutely recognise it, and I think that prison officers should be held in exactly the same esteem as other emergency service workers, because that is what they are.
In discussing violence, to some extent this debate has focused on blades because of what happened to Claire, but we have seen violent assaults that have used whatever was to hand. Only two weeks ago, we had reports of an offender who attacked a prison officer with a plastic knife, so it does not matter what the particular weapon is. In recent months, we have seen assaults across the estate using boiling liquids and makeshift implements.
There are much broader issues around the safety of officers. After the appalling attack in April last year on three officers at HMP Frankland—the same place where Claire was attacked—Ministers commissioned a snap review and announced, in June last year, that protective body armour, meaning stab-proof vests, will be mandatory for officers working in close supervision centres and separation centres, with segregation units in the high security estate also benefiting from the roll-out. I welcome any sensible steps to make it more likely that officers will go home safe.
In September 2025, the Minister for Prisons, Probation and Reducing Reoffending told Parliament that “stab-and-slash-resistant” protective body armour
“will be made and issued as quickly as possible”
and that it was expected to be issued “by autumn 2025”. Later that month, the Government announced £15 million of investment, increasing the number of vests available to staff from 750 to 10,000, including 5,000 to equip every officer working in long-term and high security prisons. That announcement also stated that prisons had already begun to receive kit that week, “ready to be worn”. Those are great and welcome commitments.
The problem is that when Parliament has asked very simple questions, namely how many of those vests have actually been issued, Ministers have not been able to answer. In October, the Government said that the roll-out across the long-term and high security estate was expected to begin during 2026. In February this year, when asked in the Lords specifically how many of the 5,000 stab-proof vests for high security prisons have been issued, Ministers again did not provide a number but just said they
“expect to begin implementation across the estate”
this year.
My first set of questions to the Minister is straightforward and factual. How many stab-proof vests have been procured since September? How many have been delivered to prisons? How many have been individually fitted to officers? What proportion of the long-term and high security estate is now operating with every officer equipped as the Government promised?
Secondly, will the Minister set out clearly what “mandatory” means? We know that protective body armour is mandated in close supervision centres, separation centres and high security segregation units. We also know, from a September 2025 written answer, that body armour is already issued for Operation Tornado deployments and for operational response and resilience unit deployments, and that it is required for planned use of force or high-risk prisoner management. We also know, however, that the question of routine issue across other prison categories is very much alive. In Justice questions, a Labour Member told the House,
“Unlike in category A prisons, prison officers at HMP The Verne and HMP Portland are not routinely issued with protective body armour”,—[Official Report, 17 March 2026; Vol. 782, c. 750.]
and they asked for appropriate armour for officers regardless of category. I ask the Minister: are the Government now considering the provision of appropriate body armour for all prison officers irrespective of the category of prison in which they serve?
Will the Minister provide a clear and comprehensive statement following this debate—as I appreciate he will not be able to go through all the details now—on where body armour is mandated on a unit-by-unit basis, where it is mandated by activity, and where it is available to officers if they want it, but is not required? That level of transparency is essential for the House, given the promises and pledges that the Government are making. We welcome them, but they do not seem to be transparent about what they are actually delivering.
The point was made that it is not about just saying, “Here’s some armour—get on with it.” We need detail on the weight of the armour, the heat burden, the cover design, and what in-life monitoring and replacement cycles are in place. Those are also important, as is how the Government ensure proper fitting and equality of provision, particularly in relation to female staff.
I am afraid the Government have a lot of work to do. I know the Minister will be critical, as others have been, of our time in government, but if we look at their record in government when it comes to prison officer numbers, they are down. In March 2025 there were 22,737 full-time equivalent band 3 to 5 prison officers in post. As of December, that was down by around 700 to 22,067, and that builds on drops from their earlier time in government.
Although the previous Government took steps to equip officers by rolling out body-worn cameras and introducing safety tools alongside a clear emphasis on training and de-escalation, I recognise we should have gone further on the provision of body armour and other equipment where officers in the POA felt it was in prison officers’ interest, and I regret that we were not able to. As the Minister knows, we have worked together on the change to the law for whole-life orders for people who murder prison officers on duty or off duty. We worked together on that successfully on a cross-party basis. We support the Government on measures that are helpful.
I want to finish with Claire. The offender who attacked Claire is currently held in HMP Frankland in a separation centre and is subject to isolation. We have already discussed the attacks that took place at that centre where people were gravely injured. Sadly, we have seen the Government give thousands of pounds of compensation to people who have been responsible for vile crimes in isolation centres because of a breach of their human rights. That is on the record and we know that that has happened. The Mirror reports that the same person who attacked Claire—the person I am sure the Minister will get up and condemn; I am sure the Minister will pay tribute to Claire and say how fantastic her campaigning is—will get compensation from the Government for having been in an isolation unit. That would be a disgrace and deeply insulting to Claire and all the other prison officers who would see that as an insult after what Claire had gone through.
I ask the Minister to write to Claire’s MP, the hon. Member for Washington and Gateshead South, to tell her very clearly—if he cannot tell us now—whether the Government have paid or are going to pay compensation to the man who so brutally attacked Claire? He does not deserve a penny of taxpayers’ money. When will the Government bring forward their promised plans to review the legal framework through which these vile people get taxpayers’ money because apparently we have breached their human rights?
In the response to the independent review of the isolation units, the Government promised to bring forward a review of the framework. They still have not done that. Can the Minister tell us, following the cases in the public domain, whether there have been any further claims lodged by offenders because of the time they have spent in isolation? I think we deserve to know that, and we deserve to know for certain that the person who attacked Claire, who we are all here paying tribute to, will not get a penny of taxpayers’ money.
The Parliamentary Under-Secretary of State for Justice (Jake Richards)
It is a pleasure to serve under your chairmanship, Mr Betts. I am grateful to the right hon. Member for New Forest East (Sir Julian Lewis) for securing today’s debate on this very important subject. I will attempt to directly answer the questions he posed. All our prison officers, to whom I pay tribute today on the record, deserve protection. Whether that means we should roll out mandatory body armour is a more complex question and requires a more complex answer. Some of the reasons why it is a complex task have been set out by the shadow Minister, the hon. Member for Bexhill and Battle (Dr Mullan) who quite rightly raises questions about the commitment that we have already made. He then also, quite rightly, asked about the training and the process by which the roll-out will take place, where items will be stored and ensuring that all staff agree with such a roll-out. I accept the premise of his question, but it is somewhat more complex than perhaps it may seem from the outset—and we are working on that.
I also want to directly speak to Claire, if she is watching this debate. What she has suffered is horrific. Like the shadow Minister, I pay tribute to her for powerfully turning a horrific incident into a campaign on a number of issues, through her efforts and those of her Member of Parliament, my hon. Friend the Member for Washington and Gateshead South (Mrs Hodgson). I am very happy to meet her. It may be that Lord Timpson, who is operationally responsible for many of these matters, will also meet her as well. I will look to organise that as soon as possible with her MP.
I will try to deal with as many of the issues raised as possible, and otherwise, I am happy to follow up with hon. Members in writing.
Sir Julian Lewis
On what the Minister said at the beginning, I would be the first to acknowledge that it may take time and be a gradual process before all prison officers are equipped with body armour in practice. What we are looking for from the Minister today is whether he accepts the principle that they should be—then we can work on the timescale and the practicalities.
Jake Richards
I absolutely accept the principle that prison officers should be safe at work and be given the tools to be so. Every prison of each different category has a different context, culture and working environment, and each has to make an assessment of the risks therein.
Sir Julian Lewis
That was not really what I asked the Minister. I was asking whether he accepts the principle that all prison officers are vulnerable to attack in any prison and that, in principle, they should be able to have appropriate body armour as standard?
Jake Richards
I accept the principle that too often there are attacks in all sorts of prisons, but of course there are more acute settings where that risk is greater. I accept that we have to take protective measures in all sorts of prisons. I do not think that I can go as far as the right hon. Gentleman may want me to in accepting the second part of his premise—I can see that he is trying very hard to get me to, but I think it is more complex than that, and I hope I can set out a bit why that is in the short time that we have.
As I said, rolling out protective body armour—as we have committed to, and I am proud to be serving in a Government who are committed to doing what the last Government did not in the high-security estate—is not just about having equipment; it requires thoughtful planning. There needs to be secure and accessible storage so that officers can access their kit quickly while also preventing unauthorised use. There needs to be clear guidance on how to handle and check the armour, and regular inspections and proper replacement schedules so that equipment remains effective. Compatibility with other equipment is also vital. Protective body armour must work seamlessly with body-worn video cameras, radios, batons and PAVA—the synthetic pepper spray. It must fit within existing uniform requirements and the regulatory environment around that. We also need to consider the impact on other staff who are prisoner-facing, but who may not be equipped with protective body armour. Making sure that their safety is not compromised is also vital.
While protective body armour is important, the Government do not feel that it is an instant silver bullet. It is one part of a broader package to improve staff safety. Officers in the adult male estate already have access to PAVA spray, which is used to prevent serious assaults. We also have over 13,000 new-generation body-worn video cameras. Work on that began under the last Government and has been continued under this Government, and it means that every officer in bands 3 to 5 can wear one during their shift. They provide high-quality evidence to support prosecutions and include a pre-record function to help capture the often crucial lead-up to incidents.
We are also going further. His Majesty’s Prison and Probation Service is working to train, equip and deploy up to 500 officers in the long-term and high-security estate with tasers. That will improve safety and enhance frontline capability in the most high-risk environments.
Liz Saville Roberts
The hon. Member for Easington (Grahame Morris) raised how key performance indicators for safety would be one particular driver that the Government could bring in immediately, which would enhance all the factors that the Minister is mentioning. Does he agree that another critical KPI could be staff retention? That is the canary in the mine, because where staff are happy, they stay—and they stay with all their expertise.
Jake Richards
I reassure the right hon. Member that details on violence in both the adult and the youth estate are seen by Ministers, and the Lord Chancellor and Deputy Prime Minister, on a regular basis. This is a key concern for all Ministers and the whole Department, and we are doing everything we can to clamp down on it. The same is true for staff retention. I am happy to call it a KPI, but it is absolutely at the top of our concerns about our prisons in this country. There is a long list of reasons why there are issues.
Liz Saville Roberts
The key point is what is measured publicly. I appreciate that Ministers will have the information, and I am delighted that they do, but the sense of what is measured and the standards by which our prisons are held to account—that the public are aware of—are key drivers in creating change within a culture that we know has needed to change for 12 years or more.
Jake Richards
Forgive me; I misunderstood the original question. I am very happy to look into what data is published and what is not, and to make sure that appropriate data—where it is safe, secure, quality assured and everything else that comes with that—is available to hon. Members. I will look into doing that in due course.
As I said, we are going further. HMPPS is working to train, equip and deploy up to 500 officers in the long-term high security estate with tasers. Violence against any prison officers is totally unacceptable. Perpetrators will face the full consequences of their actions, and measures are being taken to extend the punishment for such offences.
Prison officers do a valuable job in our prisons. They keep us safe, and we must do the same for them. Deploying protective body armour in high-risk areas and a wider roll-out is an important step. We will make sure that frontline officers have the tools to do their job safely. This is also part of our broader approach to reducing violence, strengthening control and, above all, upholding the safety and dignity of the staff who serve with dedication every day.
Members have raised other issues about conditions for prison officers. As I indicated to my hon. Friend the Member for Easington (Grahame Morris), I am very happy to meet Members and representatives of the Prison Officers Association, as I have done previously, to discuss these issues in some depth. As the Chair of the Justice Committee, my hon. Friend the Member for Hammersmith and Chiswick (Andy Slaughter), so wisely touched upon, all these issues come back to the stability of our prison system. Fundamentally, that comes back to issues of capacity and staff retention, training and recruitment. This Department’s No. 1 aim is to deal with and stabilise the prison capacity crisis, invest in our prison and probation staff—these two issues are innately interlinked—and make sure that we have a sustainable prison system that can keep the public safe in the future.
Sir Julian Lewis
When I realised that this debate was going to be held on the last day before the Easter recess, I was rather perturbed and thought that perhaps not very many people would turn up. I could not have been more wrong, both in terms of quantity and quality. The six contributions from Back Benchers taught me a great deal more about this issue than I ever dreamt I would absorb in a single afternoon. They included contributions from the Chair of the Justice Committee, the hon. Member for Hammersmith and Chiswick (Andy Slaughter), as well as the leader of Plaid Cymru in the House of Commons, the right hon. Member for Dwyfor Meirionnydd (Liz Saville Roberts), and other senior Members old and new. Every one of them made a very worthwhile contribution.
My hope was that we were going to roll it all the way through to the end with absolute agreement on the single issue of the body armour, even though some of the very knowledgeable contributions we heard from the Floor understandably went into wider issues that are also of concern to the Prison Officers Association, who were in touch with me before the debate as well.
Sadly, the Minister has made indications in the right direction but has not been willing to give the complete commitment that we want, which is that, in principle, given that this is what the staff members themselves desire, they should be able to have stab-proof vests in whichever prison they work. It would be good if we could get that nailed down.
I fully understand the Minister’s point that it cannot all happen within 24 hours of making the decision, but the process cannot begin until the principle is acknowledged. I fear, from his point of view at any rate, that he will not have heard the last of this issue, even though the Government have made some substantial steps in the right direction, as I acknowledged in my opening remarks.
I conclude by referring back to where it all began, which was the brave campaign by Claire Lewis, who turned her own dreadful experience into a force for good so that others will be better protected in the future. I did not know very much about this issue until it was brought to me by people who are more acquainted with it than I was. I acknowledge the help I have received—on background information, information about the issue and in drafting my opening remarks. With that, I conclude by wishing everybody a very happy Easter break.
Question put and agreed to.
Resolved,
That this House has considered the potential merits of mandatory body armour for prison officers.