Health Bill (Sixth sitting)

Liz Twist Excerpts

Committee stage
Thursday 25th June 2026 Public Bill Committees

[Gregory Stafford (Farnham and Bordon) (Con)]

It is a pleasure to serve under your chairmanship this morning, Ms Lewell.

It is right that Ministers are ultimately responsible to the House for the performance of the health service and subjected to the scrutiny of Parliament for its execution, but there is an important distinction between accountability and operational control, which I fear the clause risks eroding in some cases. The national health service has over many years developed a structure that seeks to balance political accountability with operational independence, and that balance exists for a reason. Decisions on what services are commissioned, where they are delivered and how resources are allocated are not purely political judgments; they are complex, technical decisions that ought to be guided—primarily, in my view—by clinical evidence, patient need and professional expertise. Transferring commissioning functions directly to the Secretary of State, as the clause will do, risks drawing those operational decisions more directly into the political sphere, even if that would not happen in every case.

The more that Ministers are involved in determining which services are commissioned nationally and which are not, the greater the risk that over time those decisions will be influenced by short-term considerations and short-term pressures rather than long-term patient outcomes. Even when no such influence is intended, the perception that that could occur will be damaging. As I said in discussions on previous clauses, the NHS depends heavily on public trust, and that trust rests in part on the belief that decisions are being made in the best interests of patients and on the basis of evidence, rather than political expediency. We should therefore be cautious about any measure that threatens to blur that line.

Despite the Minister saying that the stated intent in the Bill is to decrease centralisation, the clause appears to move some parts of the system closer towards centralisation, rather than maintain that balance. I do not believe that the Committee should take that step without careful consideration of the potential consequences.

There is also a practical dimension to this issue. Under the clause, the Secretary of State potentially assumes direct responsibility for any and all decisions currently exercised at arm’s length. That raises legitimate questions about capacity and focus. As I said previously, the health service, as we all know, is vast, complex and complicated, and decisions, especially about specialised commissions, are technical and require detailed expertise and understanding. What is not immediately clear from the clause is that such decisions are best taken by the Secretary of State rather than by bodies with dedicated expertise and a degree of operational independence.

Both my hon. Friend the Member for Sleaford and North Hykeham and the Liberal Democrat spokesman, the hon. Member for North Shropshire, spoke about highly specialised services, where essentially there is a capacity issue and a need to be able to look at the demand as a whole. They both raised the danger that, if those commissioning decisions are taken at local level, those at that level may not have the expertise, the finances or indeed the capacity to truly understand those highly complex, low volume specific needs.

I have some sympathy for the Minister, because the danger that we have seen in the NHS is that everything becomes more and more specialised and the ICBs push it away. I understand why the Government are proposing some of these changes, but we must not throw the baby out with the bathwater. We must ensure that services continue to be commissioned by experts at the national level if they need to be; and that if they need to be commissioned by experts at ICB level or even more locally, it is done through the neighbourhood health schemes that the Government are pushing, which I support in principle.

For those reasons, if the Committee is minded to support the shift in responsibility, I suggest that we put in place some robust safeguards to ensure we have transparency, consultation and evidence-based justifications for decisions. Without those safeguards, there is a risk that the centralisation of power on the one hand and the devolution of specialist services on the other will unintentionally make a system that is less transparent and less robust.

That is why I support amendment 57 in the name of my hon. Friend the Member for Sleaford and North Hykeham. The powers in clause 12 need to be bounded by checks and balances, because these are not minor administrative changes, but a significant shift in responsibility. We must ensure that decisions to move service commissioning are made as transparently as possible. In those circumstances, it is entirely right that Parliament should be able to scrutinise those decisions.

The amendment would achieve that. Subsection (4A) would require the Secretary of State, before making regulations, to prepare and publish a commissioning transition plan and to lay that before Parliament. Subsection (4B) would require the plan to set out, in detail, the services being changed and the reasons for the changes. It would also require clarity on which bodies will assume the responsibility and why they are considered capable of doing so. That level of transparency is essential if Parliament is to exercise meaningful oversight. Subsection (4C) would establish a formal consultation requirement, and subsection (4E) would require the Secretary of State to publish a response to that consultation, setting out how concerns have been addressed. That is vital, because there is no point having a consultation if the Government just ignore it. Finally, subsection (4F) would ensure that no regulations can be made until a defined period has elapsed after that response, thereby providing a time for proper parliamentary and public scrutiny.

Those of us who sit on Select Committees, especially the Health and Social Care Committee, often receive responses to our recommendations from the Department that, as my right hon. Friend the Member for Godalming and Ash (Sir Jeremy Hunt) said in evidence, give the veneer of acceptance, but then no meaningful action is taken. The amendment would allow meaningful scrutiny and ensure that the Government actually respond to that request.

Taken together, the provisions would ensure that decisions are not only made, but made openly, transparently and accountably to those who are elected in this place to represent our constituents.

[Liz Twist (Blaydon and Consett) (Lab)]

I wish to speak on clause 12 in the context of specialised commissioning. In my parliamentary work, I deal with a great number of rare disease communities and other specialised groups. Specialised commissioning is important to them to ensure that they get the service they need and deserve. Will the Minister explain how we can ensure that there is patient involvement in a more dispersed system of commissioning, and that there is national oversight and clinical leadership for all these things? How will she ensure that specialised commissioning groups are monitored and that effective services are being provided to those in the communities who need them?

Health Bill (Fourth sitting)

Liz Twist Excerpts

Committee stage
Tuesday 23rd June 2026 Public Bill Committees

[The Chair]

I gently suggest to all Committee members that it would help me tremendously if they could stand at the beginning of the debate on a group if they wish to be called.

[Liz Twist (Blaydon and Consett) (Lab)]

I will speak in support of clause 6 and against amendment 58. I work with a great many rare disease groups as part of my work as a Member of Parliament. Those people have specific health needs, and innovation is key to developing ways of dealing with their needs and to making their lives better, so innovation is at the heart of what we do.

We have many great institutions. In my region of the north-east, I will mention Newcastle University, which is doing a huge amount of research into a range of rare diseases and is working collaboratively with other institutions, particularly in partnership, to address those health needs. The clause allows the Secretary of State the breadth to encourage that innovation and to help to make it into a viable spin-off. We too often lose the benefits of the innovation that we create, and it is adopted in other countries.

Amendment 58 would put this important clause in danger of being too prescriptive, and sometimes, if we prescribe particular things, we lose the ability to do other things. I support the clause, and I do not support amendment 58.

[Joe Robertson]

The clause, and amendment 58, deal with innovation. Although the NHS is responsible for some great healthcare innovations, not only in this country but around the world, unfortunately, it is often an example of a complete failure to innovate, or even to use fairly basic technology that has been around for a long time—I am thinking of using computers for patient records, as paper records have lasted for far too long. Promoting innovation is clearly a good thing—it is essential—so I support the amendment. I will speak about the details in a moment.

Spinal Muscular Atrophy: Newborn Screening Test

Liz Twist Excerpts

Monday 22nd June 2026 Westminster Hall

[Liz Twist (Blaydon and Consett) (Lab)]

It is a pleasure to serve with you in the Chair, Mr Mundell. I thank my hon. Friend the Member for Sunderland Central (Lewis Atkinson) for opening this vital debate on behalf of the nearly 150,000 people who signed the e-petition. I am glad that, with the help and promotion of Jesy Nelson, who brought the petition forward, we are able to highlight the need for preventive action to protect children from the impact of SMA.

In my work with the all-party parliamentary group on genetic, rare and undiagnosed conditions, I closely supported the campaign for newborn screening for spinal muscular atrophy for many years. I praise the work of SMA UK and Muscular Dystrophy UK, which led the “Every Moment Matters” campaign along with Genetic Alliance UK to press for newborn screening for SMA. It is absolutely fabulous that Jesy Nelson has been able to put focus on the issue and to press the former Health Secretary, my right hon. Friend the Member for Ilford North (Wes Streeting), to take real action, although it is very sad that she had to learn about the devastating impact of SMA from her own heartbreaking experience.

With SMA, time is muscle. The condition causes rapid and irreversible neurodegeneration. By six months of age, an untreated baby with SMA type 1 will lose 95% of their lower motor neurons. Transformational treatments are available on the NHS, but we are diagnosing babies too late for them to receive the maximum benefit. I have seen the life-changing difference that early diagnosis made for a family in my constituency.

I want to talk about two brothers, Freddie and Louis. Freddie is a happy, social and determined young man who has hugely benefited from access to the lifelong treatment nusinersen. His family say that it saved his life and independence, but they still face challenges and costs in securing equipment to allow Freddie to have the freedom he needs and deserves, including by fundraising with the community for an all-terrain wheelchair that allows him to take part in as many activities as possible with his peers. Because Freddie was diagnosed with SMA, his younger brother, Louis, was screened for SMA and diagnosed before birth. As a result, Louis became the youngest pre-symptomatic baby in the UK with SMA type 2 to receive Zolgensma, a groundbreaking new gene therapy, at just 18 days old. Since getting that treatment, Louis has done well and is able to live his life free from the disease. That completely transformational treatment was available only to siblings, creating, as we have heard, an unacceptable health inequality where the wider population is denied the same chance of a healthy life.

[Luke Taylor (Sutton and Cheam) (LD)]

I was recently contacted by a constituent whose daughter was diagnosed with SMA type 1 at five months old and, in her own words, five months too late. Her child is now two and needs a wheelchair. She cannot sit or stand unaided. She depends on specialist equipment and multiple weekly visits and appointments. That is no way for a toddler to live. Does the hon. Member agree that families like my constituents urgently need the Government to fast-track the roll-out of a testing programme to all children in all areas to ensure the best possible outcomes for children affected by the condition?

[Liz Twist]

I certainly do agree. The test should be made available to everyone to prevent people from living with the effects of SMA that could have been diagnosed and treated.

As I was saying, it is important that we now have testing, but we must expand it to the whole of the UK very quickly.

[Amanda Martin]

Does my hon. Friend agree that we need to ask the Government why babies born in Portsmouth matter less than babies born in other parts of the country? If we are one of the six areas that will not have testing or screening, the babies born in my city have less chance and are therefore less valued.

[Liz Twist]

I certainly agree with my hon. Friend’s point, which was also made by my hon. Friend the Member for Sunderland Central. All babies should have access to treatment. We know the clinical consensus is absolute.

In February 2025, leading clinicians published a letter in The Lancet contrasting the UK with countries that have screening programmes. In Belgium, babies born with SMA are ambulant. In the UK, babies with the exact same condition are still dying or remaining permanently reliant on ventilatory support and tube feeding. On the wider issue of newborn screening, a range of conditions could be the subject of testing, but we are behind the world on testing. Genetic Alliance UK and the APPG on rare, genetic and undiagnosed conditions are asking for a clear timeline for a systematic review of the NHS newborn screening programme from each of the four Governments across the UK to ensure that we do not miss the opportunity to give more children a better and a healthier life.

Returning to the issue of SMA screening, the UK National Screening Committee’s updated model from August 2025 confirms that introducing screening would prevent three early deaths and stop two babies from requiring permanent ventilation every single year. Crucially, it would also prevent about 30 babies from being confined to sitting and enable 37 babies annually to live largely normal lives.

There is a rigorous financial case for acting now. Treating SMA pre-symptomatically reduces the need for lifelong mechanical ventilation and round-the-clock care. Introducing newborn screening would result in lifetime savings to the public purse of over £62 million and 529 quality-adjusted life years for each annual cohort of newborns diagnosed.

I was relieved by the Government’s announcement last month that the in-service evaluation for SMA screening will finally begin in England this October. However, the Government confirmed on 16 June that the evaluation will cover only part of the country. Specifically, it will launch in only the seven newborn screening laboratories that already have the required equipment. There must be a way of getting around that problem so that all our babies can be tested and receive appropriate treatment if necessary. The Scottish Government began a national screening pilot for all newborns earlier this year, and Ireland announced the introduction of its own screening programme in April.

We cannot accept a health system in which a baby’s chance of typical neuromuscular development depends entirely on the hospital in which they happen to be born. Will the Minister confirm whether the evaluation will be extended immediately to cover all of England, as well as Wales and Northern Ireland, for the sake of those children? We have the treatment, economic case and diagnostic tools; we must stop denying babies the chance of a healthier future.

Mental Health: Parity of Esteem

Liz Twist Excerpts

Wednesday 17th June 2026 Westminster Hall

[Wera Hobhouse (in the Chair)]

I will call Liz Twist to move the motion and then call the Minister to respond. I remind other Members that they may make a speech only with prior permission from the Member in charge of the debate and the Minister. As is the convention in 30-minute debates, there will not be an opportunity for the Member in charge to wind up.

[Liz Twist (Blaydon and Consett) (Lab)]

I beg to move,

That this House has considered parity of esteem between physical and mental health.

It is a pleasure to serve under your chairship, Mrs Hobhouse. In my constituency surgeries I see the devastating consequences of our failure to treat mental illness with the urgency it requires. In my role as chair of the all-party parliamentary group on suicide and self-harm prevention, I hear from young people about their experiences and the impact of waiting for treatment from mental health services. Bad mental health is routinely cited as a reason for economic stagnation, low school attendance rates and an increase in benefit claimants. Long waits for mental health support are directly linked to worsening symptoms and, tragically, to spikes in self-harm and suicide attempts.

[Adam Dance (Yeovil) (LD)]

Tragically, my constituent’s husband, John, took his own life in 2021 after a mental health crisis while in the care of NHS mental health services. Does the hon. Member agree that we need more Government support and funding for access to quality mental health services in rural areas? If we were losing people in this way to physical conditions, it would be a national scandal.

[Liz Twist]

The hon. Member might be reading my mind, because I will come on to that issue. I am sorry to hear of the death of his constituent—it is tragic.

[Jim Shannon (Strangford) (DUP)]

I commend the hon. Lady for securing the debate, and she is absolutely right to address this issue. In Northern Ireland, we have extreme mental health issues; indeed, the figure is 25% higher than it is here on the mainland. The Government have made a commitment to address the nation’s physical health. Does the hon. Lady agree that they must now treat the nation’s mental health equally? In doing so, they will address the emotional issues among the people we represent here.

[Liz Twist]

I do agree, and I will expand more on that theme.

Parity of esteem means tackling mental health with exactly the same respect, funding and clinical focus as physical conditions.

[Danny Beales (Uxbridge and South Ruislip) (Lab)]

I thank my hon. Friend for securing this important debate, and I know that she is a strong advocate for mental health in her role on the APPG. In the NHS, it is vital that funding for mental health keeps pace with funding for physical health care, and the mental health investment standard has been a crucial policy in driving parity of investment. Does she agree that it is vital that the mental health investment standard is retained in the NHS?

--- Later in debate ---

[Liz Twist]

I agree with my hon. Friend on the importance of the mental health investment standard as one of the measures for securing good mental health support and for making mental health equal with physical health.

As I was saying, parity of esteem means tackling mental health with the same respect, funding and clinical focus as physical conditions. We are here today to debate that principle, which has been discussed in this place for over a decade, yet it remains unfulfilled. We have made great strides in mental health: the Mental Health Act 2025, investment in mental health support teams for schools, which were rolled out this week, and additional mental health workers. Now it is time to deliver on our manifesto commitment to

“give mental health the same attention and focus as physical health.”

We need to look at the current waiting lists for mental health support, but before I look at the figures, I remind Members that every patient waiting to access mental health support is in urgent need of support, just as those on physical health waiting lists are. Sadly, and all too often, people see their condition worsen as they wait, which can lead to extreme consequences. Furthermore, physical illnesses frequently cause profound psychological distress, yet our services treat the physical and the mental in isolation. From my experiences of working with people who have rare conditions, I know the impact that that can have.

The most recent figures show that almost 1.87 million adults and over 576,000 children and young people currently hold open referrals for mental health services. If these were patients waiting for hip replacements or cardiac care, that would dominate the national discourse. NHS England has developed waiting list targets for mental health patients after referral—the longest being four weeks after referral for access to community-based services for non-urgent mental health care—but those developed standards have never been adopted. Research shows that 12 times more patients with mental health conditions are waiting longer than 18 months for treatment, compared to those with physical conditions. The Government have rightly instructed the NHS to drive down waiting times for elective physical health care, but so far mental health services have been excluded from that ambition.

The situation for our children and young people is particularly concerning. Barnardo’s says that one in five children now has a probable mental health disorder, which is double the rate in 2017. Demand has increased hugely, yet around 28% of referred children are still waiting for help, with nearly 40,000 facing unthinkable waits of over two years for treatment. We see the human cost of those delays in the lives of people like Amy, a young woman diagnosed with complex post-traumatic stress disorder. She has spent over a decade isolated at home, yet she has seen a psychiatrist only once in those 10 years. We also see it in the harrowing accounts collected by Rethink Mental Illness. One patient told Rethink that their psychosis was full-on and that an attempted suicide was the only thing that got them help. That is an unacceptable threshold for care.

I have heard of more experiences from the suicide prevention charity Body and Soul, with which I have worked. One young person it supported spent almost a year on an NHS waiting list for cognitive behavioural therapy. Just as they neared the top of the list, their health deteriorated into a severe crisis, and they attended A&E, battling suicidal thoughts. Instead of receiving urgent intervention, they were informed that their crisis made them “too severe” for the therapy they had waited so long to access. They were removed from the waiting list entirely and, with nowhere else to turn, they attempted to end their own life. As Body and Soul rightly highlights, no patient with a life-threatening physical condition would be told they are too ill to qualify for treatment, unlike in this case.

Mental health charity Mind is calling for the development of open-access mental health support pathways, ensuring that people can seek help early and directly, without facing unnecessary referral barriers or rigid clinical thresholds. When we fail to provide accessible care, the results can be fatal. People living with severe mental illness face a premature mortality gap of 15 to 20 years, compared to the rest of the population. Closing that gap by treating mental health with the same urgency as physical health must be the baseline of our approach. Rethink Mental Illness recently found that 83% of people said their mental health deteriorated while waiting for support, and nearly a third of those whose health worsened attempted suicide. Families are making impossible choices, with some parents reporting that they are skipping meals to pay for private therapy for their children because they cannot get the help they need.

This crisis in mental health impacts on our Government’s core mission to kick-start economic growth. We are seeing a rise in economic inactivity driven by long-term sickness, and poor mental health is a primary factor. The Mental Health Foundation estimates that the economic and social costs of mental health problems reach £118 billion a year. Those figures have not arisen overnight; the previous Conservative Government have much to answer for in this crisis.

We need to make sure that we maintain the emphasis on mental health. Last year, the Department of Health and Social Care reported that the proportion of NHS funding spent on mental health is expected to decline over the next two years. We need to look at that again.

[Chris Bloore (Redditch) (Lab)]

My hon. Friend was a champion for mental health long before I came to this House, and I congratulate her on securing the debate. She makes a point about spending, and I read this morning that despite 28% of cases in the NHS being related to mental health, it receives only 13% of the funding. That is at the same time that parity of esteem has been a legal requirement for over a decade. If we are serious about parity of esteem between physical and mental health, the spending must follow the rhetoric.

[Liz Twist]

My hon. Friend is quite right to point to those figures and to say that we need much more input into tackling that difference in funding.

As I said, the proportion of NHS funding spent on mental health is expected to decline, and we need to look again at that. That is exactly why the mental health investment standard was introduced, and why we need the planned 10-year mental health strategy, when it is published, to set out the actions we need to take to ensure that mental health has parity of esteem with physical health. It is vital that the MHIS continues to protect mental health spending until a suitable long-term funding measure is firmly in place to ensure that funding matches need.

Three weeks ago, the interim Milburn review highlighted the unique combination of pressures faced by young people entering adulthood today, including a mental health system that cannot respond to the current level and severity of demand, a pandemic that affected their social development and an ongoing loneliness crisis.

[Gordon McKee (Glasgow South) (Lab)]

My hon. Friend is being very generous in giving way. I know that this is a topic she understands deeply and has campaigned on for many years. She is right to highlight the Milburn review. Does she agree that part of the response has to be developing a mental health support system that is preventive, not just reactive? We see that in child and adolescent mental health, particularly in Scotland, where there are enormous waitlists. We have to tackle those, but we also have to have a system—in education, for example—where we prevent people from reaching crisis, whether in childhood or when they become adults.

[Liz Twist]

I absolutely agree with my hon. Friend, which is why I am so pleased that we set up mental health teams in schools.

We need to look at preventive measures so that we do not keep getting into this position. When people are left to languish on waiting lists, their ability to participate in the workforce collapses. We must stop waiting for people to hit rock bottom before we step in: we have to deploy preventive measures. It is simply not good enough that one in three young people must wait more than 18 months for treatment after referral.

I welcome the changes the Government have implemented, the extra investment for mental health support in schools, and the expansion of that support to 100% of schools by 2030, but I have some specific asks of the Minister, supported by mental health charities. First, will she ensure that reducing waiting times for non-urgent community mental health care is included as a specific priority in NHS planning guidance? That would send a clear message to local systems that this must be tackled alongside elective physical care.

Secondly, Mind, the mental health charity, says that reducing mental health care waiting times must be treated as a core test of parity of esteem; Rethink makes the same point. Will the Minister commit to fully rolling out the access and waiting time standards consulted on by NHS England in 2021 to ensure that emergency mental health care is provided within one hour, urgent care within four hours and community care within four weeks?

Thirdly, to help us to meet our shared ambitions for parity of esteem, will the Minister outline how we will work together to reverse the projected decline over the next two years in the proportion of NHS funding spent on mental health? Will the Government also commit to protecting the mental health investment standard until a long-term alternative funding plan is firmly in place?

Finally, the Government have outlined an ambitious shift toward neighbourhood health services. How will the Department ensure that community mental health is a central component of this roll-out, so that patients can access multidisciplinary support before they reach crisis point? We have a historic opportunity to build a national health service that treats the mind and the body with equal respect. I look forward to the Minister’s response on how we will finally deliver true parity of esteem between physical and mental health services.

Health Bill (Second sitting)

Liz Twist Excerpts

Committee stage
Tuesday 16th June 2026 Public Bill Committees

[Helen Morgan]

Q My second question is similar. In reality and in practice, how do you envisage ICBs will be locally accountable once these legislative changes have taken place?

Sir Ciarán Devane: According to the ICBs we are talking to, which is all of them, they are saying that they believe in local authority engagement. We will be saying, “You may not be told you have to, but we would encourage you to do it.” I am sure that should be coming from the Department as well.

The witness to my right is an example of that; we know that when the NHS has really good local connections, you can get things done in the interests of your patients much more easily. The belief is there, but we need to make sure that the legislation is not seen as a signal that this is unimportant. That is a risk. As a representative organisation, we have to say to people, “We hear you saying that you really believe in this. Therefore, you need to demonstrate, not least to the Secretary of State, that you are following it through.”

I have a small additional point about mayors in unitary authorities being able to appoint somebody who is both the chair of the ICB and the local health commissioner. That should help. Those individuals will have to work out how to serve two masters, but that is okay—other people learn how to do that, too.

James Blythe: I would focus on a slightly different part of the Bill in terms of how this needs to work. There are 25 ICBs; that is quite a large footprint. From my experience of delivering meaningful collaboration and joint working between health and local government, I think it tends to happen at a more local level than that. The neighbourhood health plan in the Bill becomes extremely important. As a system, we should be very ambitious for those neighbourhood health plans. They should go a lot further than just describing what should happen in terms of improving health outcomes at a local level.

We should set an aspiration as a system that there should be a responsibility on health bodies and local government bodies to describe how changes will be made. The role of ICBs is to enable groups of providers and other organisations in local areas—most ICBs will have several places—to come together and not just work out what a local population needs, but actually do it. That will mainly be about relationships on the ground between an acute hospital team, a community services team, a mental health team and a social work team.

The role of ICBs is very much to give the contractual tools and mechanisms to local NHS organisations to work effectively with their local authorities so that there are really good neighbourhood health plans. Most importantly, they should not just write them but actually see them through.

[Liz Twist (Blaydon and Consett) (Lab)]

Q Sir Ciarán, the 10-year health plan, which is behind a lot of this, demands that we are really ambitious in involving patients and communities in shaping the services that they need. How can we best support ICBs, local authorities and other organisations to drive that change?

Sir Ciarán Devane: I go back to our having to convince people. Many people are convinced—that is probably the first thing to say. But we have to convince people of the benefit of doing this. Delivering the ambitious neighbourhood health plans that James describes will happen only if everybody is in the room and doing it.

I do not necessarily think that the legislation can mandate that belief or the way to do that. However, it can set an expectation for the ICB that, in developing its plans, it should be able to demonstrate that it has engaged with the local authorities, patient organisations and the public local to it. The legislation can set an expectation that the ICB is using population evidence to make the right commissioning choices and that, if reconfigurations, which may well be locally contentious, are to happen, engagement happens beforehand. As elected Members, the Committee will know that those conversations should start early and that local populations should not just be bounced into something.

It will be incumbent on the new department to set those expectations with the ICBs about the new way of working. That is the only way we are going to create an NHS that will be able to cope with the number of frail, elderly people with multiple morbidities. Those people are a consequence of the success of the NHS over decades. People are living longer with cancer; the prevalence of cancer—the number of people alive with cancer—has doubled in 20 years. But that means that there are four million people who are not necessarily well. The only way to cope with that is to make a significant and radical change to the neighbourhood health plans and bring the public with us. That will happen only with proper patient and public engagement.

[Liz Twist]

Q Do you think that there are any good examples we can learn from?

Sir Ciarán Devane: Yes, I do. I was in Epping recently, at St Margaret’s. I talked to the lady who runs the patient engagement: she is a volunteer and is a patient herself. They are a very good example, because they have said, “If we want to provide good services and avoid people turning up at the A&E in Harlow, we can do a neighbourhood diagnostic service.” The patient representatives got in very early. They ran some public meetings ahead of it and said, “We are thinking of doing this: what do you think? We’ll feed it back.”

Everything good is happening somewhere. It is the variability that is causing the problem. We need to make sure that good practices are deployed across the sector. That has to be the expectation: if this reform, which is huge, is to deliver value, that is the value that it has to deliver.

--- Later in debate ---

[Edward Argar (Melton and Syston) (Con)]

Q I know that in this conversation some have highlighted that patients have stated that their experience has worsened or not improved, but I would argue that is not a Healthwatch failure; it is actually down to the NHS or ICBs not acting on Healthwatch recommendations. It seems to me perverse to give that voice to the organisations that are actually part of the problem through not acting.

As a Minister, I was on the receiving end of some quite sharp recommendations from Healthwatch, but they were always constructive. Whether right or wrong, my fear is that this measure risks a perception among patients that it will be down to NHS managers and ICBs essentially to make recommendations that reflect their priorities, rather than the priorities and voices of patients. Professor, even if the principles that you have enunciated that might mitigate that risk were applied to the new model, are you really confident that they could mitigate the risk to patients’ confidence that their voice is genuinely and independently heard, loud and clear, however unhelpful it is perceived to be by bits of the NHS?

Professor Croisdale-Appleby: I cannot be confident of that, because we are in the foothills, not up the slope, and the details have not been given. ICBs have received something approaching a 50% cut in their running costs. I will not comment on the appropriateness or otherwise of that, but one has to be realistic and think about how high a really informed patient voice—particularly one that seeks out the views of both communities and individuals where the health inequalities are the greatest—will be on the priority list. I would question that, but I will leave it there.

[Liz Twist]

Q You all represent patient organisations in different ways. I would like to put this in the context of the 10-year plan and the shift to involve patients and communities in shaping services. From your patient perspective, how can we best support ICBs, local authorities and other people to drive that change for patients?

James Cooper: It is key that ICBs are given that support. In the conversations that Together for Short Lives and the services we represent have with ICBs, we certainly get the sense that they want support. They want to know how much they should be funding certain services, and they want to know how to plan. A lot of guidance is already out there, particularly in children’s palliative care, where we have service specifications and NICE guidance and quality standards—there is even a legal duty to ensure that ICBs commission palliative care for children and adults. That accountability and support from the centre, and making sure that resource is there, is key.

[The Chair]

Q Do panel members have any further comments?

Professor Croisdale-Appleby: I just want to reassure colleagues here that Healthwatch England and the Healthwatch network are still fully functional—I think that is important for you to know. Although we are sensibly on a reducing trajectory in line with the Government’s abolishment plans, we will maintain that full functionality and the ability to meet our formal mandate right through until the Bill is enacted, and until the guidance that will probably follow is in place. I just wanted to reassure the Committee of that.

--- Later in debate ---

[Dr Johnson]

Q The question was really about trust, and how people can be trusting of figures. For example, with Healthwatch, if you internalise patient experience into an organisation, do people then trust you when you say that it has got better? They will have only their own experience and the experience of their own family to work on; that will be the lens through which they look at things. We know that the waiting list numbers have come down, and there is not widespread trust in those numbers, for all sorts of reasons. If the numbers for patient experience are governed by the Department of Health, or the ICBs themselves marking their own homework, will the public trust them? Whether they should trust them is one question, but will they trust them?

Karin Smyth: I will come back to the waiting lists, but you are absolutely right about trust. In saying that I expect this to be the board’s job, I think it is its job to get this right, and we need to support it to do that. We heard a bit from Penny Dash about the national quality board and the patient experience directorate inside the Department of Health and Social Care reporting directly to the chief executive and the permanent secretary. That has to be part of the wider architecture, which is of course outside the Bill, so we need to be able to tell that story to the wider public.

We know from all the recommendations, reviews and the support that we give as Members of Parliament to our constituents that trust is really important. Getting that right and bringing people on that journey with us will be really important. Independence helps with that, and that it is why it is good to debate it as we consider the Bill—it is good to be able to air some of it—but I think people accept that things are not working and have not been working.

I think your question about waiting lists is about the data and the information that says where we are at. It is really complex. To follow NHS England’s data, of which there is a lot—I commend the amount of data that is available—you need to be quite clever at spreadsheets, and at finding and articulating data, in order to bring it back to your own constituency and local place. These things are complex. It is complex to record, track and recognise how people move through a waiting list, for example.

It is good that we are transparent about that. One thing that I am keen to push out is data on performance in trusts. Making so-called league tables is controversial, but the more information that we have out there, and the more we have honest debates about how complex and difficult it is—I am happy to take your questions around how that moves in order to for us to explain that—the more that helps to build trust.

[Liz Twist]

Q Minister, we have talked a lot today about ICBs, the local government Healthwatch and the single patient record, and we have heard some interesting comments. Can you summarise why you believe it is important that we look at this legislation now?

Karin Smyth: I will come to the single patient record because I think it is a gamechanger. We have heard today from some fantastic experts about the work they are doing to identify how it might work and how we might bring patients and the public with us. Again— I do not think we should just bank this—we have not heard anybody object to it.

We did have some evidence highlighting how things have gone wrong in the past. I worked at a primary care trust and clinical commissioning group at the time when care.data was brought forward. We can all point to where it has gone wrong, but nobody has said that this is not the right thing to do. That is good, but there is still a lot of detail to go through.

We need to keep highlighting the benefits. We heard from Peter Prinsley about whether patients have more control—we do think this is about empowering patients. That was what we said in the 10-year plan. The 10-year plan is about empowering patients in this very large system, for which they are now paying £200 billion of their taxes.

We heard from the excellent clinical panel. I defer to clinicians about what they need, both if they are dealing with chronic long-term conditions—we heard that it can sometimes take two and a half hours for an assessment—or if they are working in a busy emergency department. The fact that this is needed will be controversial. There will be a lot of questions about it and a lot of concern about privacy, data, cyber and so on. We need to hold on to those benefits, which are huge in clinical terms and for patients.

Another point we heard, which is also true, is that people think this already happens. People do not understand why, when they turn up at an A&E in Whitby, as we heard, or somewhere else, and then go back to central London, the systems cannot talk to each other. For me, that is about people’s trust and belief in what is a public service. It is a really important part of that.

On abolishing NHS England, I do not think anyone has come to one of my constituency surgeries and said, “Please do this,” or talked about it in great detail, but people do understand. My experience in opposition and so far in government is that MPs are perplexed when they try to intervene on behalf of patients, or to get an answer locally as to why on earth chief executives of ICBs or trusts sometimes do not respond even to a Member of Parliament’s requests for meetings. I find that shocking, but it does happen. How on earth is a patient or somebody struggling through the system expected to get a response? Getting it right is not black and white, and it is not easy to get the balance right between the Secretary of State’s democratic oversight and autonomy at a local level, but the Bill starts the process of doing that, and it is fundamentally important.

Regarding the other provisions, I accept that great work has been done by many people in Healthwatch and its predecessor organisations, and by people working in the patient safety landscape, but again it is not working. I think that those bodies have been allowed to abdicate responsibility for the core role of patient experience and patient voice. That is not their homework; it is their actual job. It is not something that should be outside, and that is why I think this Bill is really important.

[Helen Morgan]

Q I think I would agree with you, Minister, that no one thinks that abolishing NHS England is, in itself, a bad idea, given the duplication and cost. People do not think that a single patient record is a bad idea; I think that they assume that it already exists, and it could be transformative. There are therefore some really good points of agreement on the Bill.

It would, however, be helpful to reflect on where there is not agreement: on abolishing Healthwatch and HSSIB. You make the very good point that they have not been successful in their current incarnation, but it is important to consider whether that is because they do not have teeth, or because the organisations that they are trying to change are defensive.

We heard earlier about the culture of fear, and I think that we have probably all had people in our surgeries who can describe being frightened to speak up about their own personal care because they feel that they might be victimised for it. I know of clinicians who are frightened to speak up about their own experience in the organisation in which they work, because they feel that they will be punished for it.

In the light of that defensive culture that we know exists in the NHS, and has been highlighted time and again—Mid Staffs; the Shrewsbury and Telford maternity scandal—is the answer not to put the patient voice in the organisations that have a culture problem, but to give those other organisations the teeth they need, or confer a duty on the ICBs or providers to act on recommendations that are given to them, because I think that might be a more helpful way of dealing with this problem?

Karin Smyth: I think that gets to the crux of some of this. We will discuss it a lot in Committee, and I am obviously very open to keep discussing it.

Thank you for your support on the main provisions. I do not take that for granted because, again, they are still controversial. However, as I think I said earlier, you are right, although it is not true everywhere. I am not blaming individuals, because I think that people have been trying to do a difficult job, particularly in getting us through the pandemic and beyond. But they are defensive. That is why Members of Parliament and others do not get responses to their phone calls or their emails. That is a culture that we have to change, and we need to support people to change.

One of the things that we will do is to bring in regulations—that is a manifesto commitment from the Government—but another commitment that we have made outwith the Bill is to develop a leadership college to support in particular clinical and non-clinical managers, who have a very difficult job, in having the right skills for the new world, which patients and the public rightly expect to be more open and more transparent. We have to change this defensive culture.

However, even since Francis, the adding of bodies and the adding of recommendations, and with the bad experience that you have done so much around, something different has to happen. Again, what we heard from Jeremy Hunt was that we needed to put more prescription into the system and yet more requirements to do something without actually making that someone’s central function and job.

Now, it is a source of disagreement. As I have said, I think that there is a philosophical disagreement about the best way forward. It is not an antagonistic disagreement; there are fundamentally different views about what to do. We will continue to have discussions, because I think that ultimately we all want the same thing: a more open, transparent and supportive culture. By the way, nobody wants to work in a defensive culture, so I think people want that outcome.

It is up to us as politicians to support difficult conversations and trade-offs that happen locally. My view has always been that politicians will support difficult conversations and trade-offs—we heard a little bit about reconfigurations earlier—if the system provides good clinical rationale, good data and good evidence, but those bits of it do not always line up.

That is what I would like to get to. I absolutely understand and hear what you say—we will hear more about it and discuss it more, and I have read all the amendments about the best way forward. I think that we all want to get to the same place, but what is the best way to do that, given that we all know that this is really not working and cannot continue?

Health Bill (First sitting)

Liz Twist Excerpts

Tuesday 16th June 2026 Public Bill Committees

[The Minister for Secondary Care (Karin Smyth)]

I am a member of the Managers in Partnership trade union, which is giving evidence this afternoon.

[Liz Twist (Blaydon and Consett) (Lab)]

I am co-chair of the Unison group of MPs, which is linked to Managers in Partnership.

[Peter Prinsley (Bury St Edmunds and Stowmarket) (Lab)]

I am a retired ENT surgeon and a fellow of the Royal College of Surgeons.

--- Later in debate ---

[Gregory Stafford]

Q What happens if the problem is the CQC?

Dr Dash: Well, we then have to deal with that as a problem. That is the same as saying, “What happens if the problem is this organisation or that one?” We have 150 organisations—150. What if the GMC is a problem? What if the Nursing and Midwifery Council is a problem?

[Liz Twist]

Q Dr Dash, you have explained why you believe that the changes to Healthwatch will strengthen patient responses. How do you think that could be strengthened to ensure that the levers really are being pulled for patients? That seemed to be the case.

Dr Dash: There are a few different things. First, we have talked about appointing a director of patient experience. They will report directly to the chief exec of the NHS. That is crucial; it is about emphasising the importance. We are about to do the interviews for that person, so I hope they can be in post very quickly.

Secondly, we are hopefully about to publish the quality strategy. Within that strategy, which has come out of the 10-year plan, we are very clear about the three dimensions of quality. Those are: safety, so ensuring that basic standards are in place; effectiveness, so making sure that patients receive the right care in the right place at the right time and it is delivered to a high standard; and, crucially, patient experience. In the quality strategy, we emphasise that all three of those are crucial. You need to have all three and all three need to be done really well.

We then go on to talk about different mechanisms for improving those dimensions. Crucially, we have a set of 183 metrics, which we will review within the NHS England quality committee while it still exists, and then within the National Quality Board. We also expect every region to review those metrics, as well as others, and every ICB and provider to review the ones that are relevant to them. So the next bit is to have all those different metrics.

Thirdly, we need wider transparency. There are way more than 183 different metrics and we need to have far more on patient experience. They need to be routinely collected in the same way that we do surgical audits or audits of GP work. Those all got in the public domain; that was a big element of the 10-year plan.

Finally, as I said before, we need boards to take full responsibility and accountability for all aspects of quality, which includes patient experience. As I go round and meet individual hospital boards, I ask them about that. I spend quite a lot of time with chairs and new non-executive directors coming into NHS providers, and I continually emphasise, “This is a crucial area for you to focus on as a board.” What are you asking your exec colleagues? Who have you put in place as your director of patient experience within the organisation? How are you routinely collecting information from a whole spectrum of users from the whole of society? How are you doing that in a confidential way for the reasons we spoke about earlier, and then ensuring that people are acting on it? I do not think we are doing anything like enough of that, and we need to get much better and do far more of it.

[The Chair]

For a final brief question—and a brief answer, please—I call Joe Robertson.

--- Later in debate ---

[Sojan Joseph]

Q Mr Lant, I am trying to understand a bit more about the patient experience and improvement in care that Healthwatch brings. My understanding is that when a patient raises a complaint with the local provider, it usually gets investigated by a local service manager or a matron, but when somebody is not confident about raising a complaint with the local provider, they go to Healthwatch, and that complaint usually filters down for the same local service manager or matron to investigate it—we have seen that happening. Patient experience is not being improved without local accountability or local change. Can you explain why you are concerned about abolishing Healthwatch and bringing more accountability to local ICBs or local authorities, which may improve patient experience and patient care?

Jacob Lant: The issue is that the system—the NHS provider, the commissioner or whoever is picking up the individual complaint—will treat that as an individual incident to look into. Healthwatch may support the individual to raise that complaint or that individual piece of feedback, but the collective learning across that is more important, and it is pulling out the themes that are consistent across multiple bits of feedback, both positive and negative, that makes the difference. We see that evidence and insight from Healthwatch making a difference in local and national policy. It might not feel like that to the individual patient, but things like the creation of a single patient record exist in part because of a lot of campaigning by local healthwatch on the issue of people having to repeatedly tell clinicians about their experiences.

It also could be issues to do with not being able to find a dentist, for example; the system will treat that as an individual incident of helping someone who is trying to find a dentist or not, but Healthwatch could use that insight to petition and push for national change around the commissioning of a service like dentistry. A topic like administration of care, which Healthwatch, National Voices and the King’s Fund have all worked on together, is invisible from the way that the system perceives performance at the moment, but because we listen thematically to patient experience, we can push for a much greater focus on things like the basics of communication and keeping patients up to date on what is happening with their care, which really matter. Healthwatch is thematically looking at patient feedback differently from the way that system does, and that is something I fear may be lost.

[Liz Twist]

Q Ms Woolnough, you have talked about the abolition of NHS England, and, as I understand it, you are dealing with what the position is rather than taking a stand. Beyond the legislation, what are the key things that we should be looking at to get the transfer of functions to ICBs and DHSC right?

Sarah Woolnough: We have talked quite a lot about the culture in the NHS and whether these changes enable the sort of shift that lots of people talk about wanting. Let us be really serious about devolving power and earned autonomy, and about the balance between politicians rightly being held accountable for high-level metrics but with enough operational freedom to allow local systems—services close to people and patients—to get on and do the best for them?

We have a slight concern that, even though the Carltona principle should mean that the Secretary of State will enact powers in a way that does not slow things down, because of the broad sweep of powers given back to the Secretary of State, and the quite extensive powers of direction, politicians come under extreme pressure to intervene in certain cases or when there has been a scandal or patient safety issue, and that could lead to things clogging up.

Fundamentally, our worry has been—again, this goes beyond the legislation—how do you genuinely create a system where the culture is not as paternalistic as it has traditionally been, where you are empowering both staff and patients and citizens to have more say in their care, and where system leaders are not constantly looking up for permission, worried they may be held to account for quite a narrow set of metrics? Although managing money and constitutional standards is very important, if we are to deliver the 10-year plan aims and improved patient care, it is more than that. Our worry has been that the abolition of NHS England by the legislation will narrow things. We do not know, because it is broader than legislation, but how do we fundamentally shift the culture? I know that that is the Government’s intention, but it is about more than legislation. Where is the work to make that happen?

[Liz Twist]

And do you think—

Oral Answers to Questions

Liz Twist Excerpts

Tuesday 9th June 2026 Commons Chamber

[James Murray]

The renewed women’s health strategy was a really important achievement under the previous Secretary of State, which updated the approach of this Government and reflected the differences in healthcare that women too often receive. If I might offer a personal reflection, since I have become Secretary of State, one issue that many women have raised with me is that they do not feel the health service adequately listens to them, takes their pain seriously, or gives them the right pathways to get the treatment they need. That must change, and this Government will change it.

[Liz Twist (Blaydon and Consett) (Lab)]

4. What assessment he has made of the adequacy of progress on implementing the suicide prevention strategy for England.

[The Parliamentary Under-Secretary of State for Health and Social Care (Preet Kaur Gill)]

This Government are committed to delivering the five-year, cross-Government suicide prevention strategy, and have published NHS England’s “Staying safe from suicide” guidance. Although progress has been made, we recognise that there is more to do and will continue to drive delivery of the strategy.

[Liz Twist]

The strategy said that it would

“reduce the suicide rate over the next 5 years—with initial reductions observed within half this time or sooner”.

However, we have now passed the halfway point, and sadly, those initial reductions have not been achieved. What is the Government’s plan to ensure that target is achieved by the end of the strategy?

[Preet Kaur Gill]

First, I commend my hon. Friend for her tireless campaigning to improve mental health and prevent suicides—I know this is personal for her. We have made progress on implementing the strategy, including launching the near to real-time suspected suicide surveillance system to detect trends earlier. We have also committed £3.6 million in support for middle-aged men for areas that need it, ensuring that it is co-produced with families and local partners so that it is accessible. We plan to update the strategy, which will consider the evidence, the progress so far, and where there are opportunities to go further, but I would welcome my hon. Friend’s input into this very important work.

Health Bill

Liz Twist Excerpts

2nd reading
Monday 1st June 2026 Commons Chamber

[Liz Twist (Blaydon and Consett) (Lab)]

First of all, I very much welcome the Bill. It has been designed to deliver and work with our 10-year plan in that bigger picture.

I will touch on three issues raised with me by my constituents in Blaydon and Consett. The first is the single patient record. Of course it makes absolute sense for everyone to be able to access up-to-date records when a patient is admitted. I think of the groups I have worked with who have rare conditions, for example, who find that when they are taken into a different hospital, the doctors there are unable to access the records of their specialist treatment. That is the first thing, although there is also a good deal of concern among my constituents and others about how that will be managed and brought about, and how the data will be handled and the contracts awarded.

The second issue I wish to raise is Healthwatch. I understand that the Government’s real intention, through the Bill, is to strengthen the patient voice and the ability to raise issues, but there is real concern that an organisation inside the Department of Health and Social Care will not provide that independence. Will the Minister commit to looking again at how that independence can be built in and linked with the ability to pull the levers that Ministers have talked about, in order to make a real difference for patients? It is about getting that balance right.

Finally, I want to talk about parity of esteem for mental health services. As we move from treatment to prevention services, we need to use this legislation to reinforce parity of esteem for mental health services, including in the ability to access them. We need to build in preventive measures and access to those mental health services. I would just like to comment on the point made by my hon. Friend the Member for Worthing West (Dr Cooper) about building public health issues into the overall health framework. We need to look at re-establishing that public mental health function within DHSC under the new arrangements, and indeed within ICBs. We need also to link this to our mental health strategy, which we are expecting in the very near future. I welcome the Bill greatly and look forward to seeing those issues addressed in Committee.

National Suicide Prevention Standard

Liz Twist Excerpts

Tuesday 14th April 2026 Westminster Hall

[Graham Stringer (in the Chair)]

I remind hon. Members that they may make a speech only with the prior permission of the Member in charge and the Minister. I have received no information that such permission has been given. As is the convention for 30-minute debates, there will not be an opportunity for the Member in charge to wind up.

[Liz Twist (Blaydon and Consett) (Lab)]

I beg to move,

That this House has considered Government support for businesses implementing National Suicide Prevention Standard BS 30480.

It is a pleasure to serve under your chairmanship, Mr Stringer. This debate is about a risk we often overlook in our workplaces, but which can have a great impact on families, work colleagues and a much wider group of people. We have rigorous standards for fire safety and electrical wiring, and for hard hats on construction sites. We accept those as the cost of doing business safely yet, until now, we have had no such road map for the most complex safety risk of all: the mental health and lives of our employees.

Research shows that one in four adults has contemplated suicide, and one in 13 has attempted it. For every suicide death, at least 135 people, including colleagues, clients and communities alike, are directly or indirectly affected. Suicide is the leading cause of death for men under the age of 50. According to the Office for National Statistics, it was the leading cause of death for males and females aged 20 to 34 in the UK for all years observed, accounting for 27.1% of male deaths.

Suicide touches nearly every workplace, yet most organisations lack the tools to address the emotional aftermath.

[Jim Shannon (Strangford) (DUP)]

First of all, I commend the hon. Lady for introducing the debate; this is a massive issue, absolutely. Does she not agree that, as 90% of businesses are small businesses with no human resources department, it is difficult for employers to be aware of the help for staff, and to be trained? Further, does the hon. Lady not agree that the Government, and particularly the Minister, need to ensure that accessible training is of no or minimal cost to small businesses? The very thing that the hon. Lady wants to happen can happen, but it needs that wee bit of help.

[Liz Twist]

Of course small and medium-sized enterprises are in a difficult position without large resources, but there are lots of things we can do. As the hon. Member suggests, I will ask the Minister what we can do to ensure that SMEs also have the ability to take part in this training.

[Alex Easton (North Down) (Ind)]

Does the hon. Member agree that BS 30480 will make a real difference only if businesses are actively supported in implementing it, rather than simply being left with a “do your best” approach? In that context, would she support formal a Government endorsement of the standard, including through health and safety guidance on work-related stress and psychological risk?

--- Later in debate ---

[Liz Twist]

Indeed, I will be pushing the Government to do all they can to support the implementation of the standard, and to recognise those psychological risks.

As we know, male-dominated industries such as construction face severe historical challenges with work and mental health. Agriculture and farming workers face extreme social isolation and financial pressures, and have access to lethal means. Healthcare workers and emergency responders experience severe trauma alongside having ready access to pharmaceuticals.

The economic impact of suicide is clear. In the UK, it is estimated at nearly £1.46 million per death. Nationally, this costs the UK economy nearly £10 billion per year, factoring in the cost of lost productivity, healthcare and emergency services. Suicide has a profound effect on every workplace it touches, whether through the loss of a colleague, supporting someone in crisis or managing the complex emotional and operational aftermath. Yet organisations are not necessarily equipped to address this issue openly and effectively. For employees without proper support, the trauma and grief of exposure to suicide significantly damages workplace attendance, retention, performance and productivity. Colleagues often experience profound feelings of guilt, inadequacy and confusion.

Because people fear saying the wrong thing, they often do or say nothing, which leads to further distress and emotional toll. This standard, informed by research, data and lived experience, aims to provide organisations with practical, evidence-based recommendations to help plan for, respond to and support people affected by suicide, or those with thoughts of suicide, in the workplace and beyond. The standard is designed to help workplaces support people who might be on the frontline of dealing with the stresses and strains of life.

[Robbie Moore (Keighley and Ilkley) (Con)]

I commend the hon. Member for her work in chairing the all-party parliamentary group on suicide and self-harm prevention. I also thank her for jointly organising an event in Parliament to which constituents of mine, Anna Scott and Roger Cunliffe, who lost their daughter to suicide, brought the Yorkshire Speak Their Name quilts; we had 19 quilts on display here in the Houses of Parliament.

Will the hon. Member recognise, however, that those in our farming community, working in isolated environments, are of particular concern, with men in farming being twice as likely to lose their lives to suicide as the average man working in any other environment? Will she join me in celebrating the work of the Farming Community Network and others, which do so much to support those working in isolated environments, particularly in the farming community?

[Liz Twist]

I thank the hon. Member for that question. I had great pleasure in working with his constituents on the quilt exhibition in the Upper Waiting Hall; it was a tremendous experience, and they do tremendous work. Farming is indeed one of the industries most affected by these circumstances. I certainly commend the work being done on the agricultural side, by organisations such as Yellow Wellies, to ensure that those issues are addressed.

[Rachael Maskell (York Central) (Lab/Co-op)]

I really appreciate all the work that my hon. Friend does in this area. I was very moved when a constituent, a police officer, came to me to share the experiences from his force when somebody took their life. The force did not have the tools available to support him, leading to his own mental health challenges, and to those of his colleagues. Therefore, it is really important, as part of this standard, that employers are equipped to identify those pressures—often overwork and stress, or bullying at work and the culture set in the workplace—and to then address the challenges that people face with trauma. Does my hon. Friend agree that we need that holistic approach to people’s wellbeing at work?

[Liz Twist]

I thank my hon. Friend for that question. Certainly I agree that we must do all that we can. I hope that, in this debate today, we will be able to take steps forward to implement the standard.

I want briefly to touch on the work that the British Standards Institution does. It plays a vital role in workplace standards of all kinds in this country. The BSI is 125 years old this year. I am sure the Minister will join me in congratulating the BSI on that achievement, and the enormous contribution it has made to businesses and the everyday life of people throughout the United Kingdom since 1901.

British standards have helped with everything from saving lives with medical devices to air raid shelters during the war, crash helmets and now addressing suicide. I thank colleagues from the BSI for being here in the Public Gallery today to raise awareness of their organisation’s hard work, particularly on the new standard BS 30480: “Suicide and the Workplace”. I know that the BSI has a positive impact on society through its work. As chair of the APPG on suicide and self-harm prevention, I am pleased to have supported work on that standard. I am also delighted that the House has endorsed the standard and is seeking to adopt it following internal consultation.

The publication of the world’s first standard on suicide and the workplace represents a significant milestone in supporting mental health and wellbeing at work across the UK and beyond. The BSI, acting as convenor, brought together many leading individuals and organisations to develop it. The standard itself calls for assigning a named senior leader to take responsibility for the organisation’s suicide prevention strategy and provide targeted training so that line managers are confident in spotting warning signs.

[Lee Pitcher (Doncaster East and the Isle of Axholme) (Lab)]

My hon. Friend is a true champion for mental health and has been quite an inspiration to me since I have been in Parliament. The standard is an amazing step forward for mental health in the workplace and is hugely welcome. It will save lives and help people in their everyday lives who experience suicide happening around them. Does my hon. Friend agree that we need to be proactive and open up channels of communication really early to prevent suicide? We should encourage things such as mental first aid training in the workplace, which is really important.

[Liz Twist]

I absolutely agree with my hon. Friend. Indeed, the whole purpose of this debate is to encourage us to be proactive and work with other organisations and employers to ensure that the standard is implemented and lives are saved.

Additionally, the standard encourages businesses to collaborate with workers to help design individual safety plans that outline coping strategies and emergency contacts at times when they need help or support. I was glad to work with the BSI on the standard. It represents the outcome of a huge amount of work involving employers, and mental health and suicide prevention organisations such as Samaritans, trade unions and BSI staff, some of whom are in the Public Gallery today. I was especially pleased that Mr Speaker granted permission to help launch BS 30480 in Speaker’s House last November.

I pay tribute to Professor Ann John, director of the National Centre for Suicide Prevention, who chaired the BSI committee, and within that, Marcus Long, who led the communications group, and Peter Kelly, who led the drafting panel. I also thank the BSI staff I have worked with over the past few months—Jane Packer, Lachean Humphreys and Robert Jervis-Gibbons—for their leadership on the standard. It has been a great pleasure working with all of them, but now we have to make sure that the standard is rolled out by employers. There has been a great deal of enthusiasm from employers to date, with 11,500 downloads of the standard so far.

How can the Government promote the standard? I believe the standard will help many workplaces across the UK, and I am sure the Government will work with me and the BSI to promote it to businesses. For example, Heathrow airport has publicly spoken about its adoption of the standard, and so has the Inclusion Education, in a recent BSI webinar in which I took part. Can we please encourage more to follow their lead? I believe we need the Government’s help to do this.

As we have heard, the standard offers clear guidance for organisations of all sizes and sectors, including public bodies, charities, social enterprises, businesses and commercial enterprises. I hope the Government can actively promote it, especially within high-risk, male-dominated industries, by leveraging their new and existing partnerships, such as the upcoming three-year collaboration with the Premier League, aimed at improving men’s health, literacy and suicide prevention. Furthermore, the Department of Health and Social Care could work with the Health and Safety Executive to ensure that workplace first aid and safety guidance emphasises the importance of managing risks to mental health using the standard. I am pleased the Government mentioned the standard in the men’s health strategy earlier this year, and that was significant. That is a good starting point for ensuring that employers start to implement the standard. The focus of today’s debate is how the Government can help with that task and help BS 30480 contribute to the national suicide prevention strategy.

April is Stress Awareness Month in workplaces, and I hope the Minister will agree to some actions today, maybe on behalf of his colleagues in the Department for Business and Trade. First, will his Department help to promote this important standard with business, public sector bodies and throughout Government? Secondly, will he commit to jointly organising and attending a roundtable with me, the BSI, the Department for Business and Trade, key UK businesses, SMEs and the unions to discuss the roll-out of the standard across UK workplaces. Thirdly, will he say how the Government will ensure that small and medium-sized enterprises can access the trauma-informed training required to implement the standard effectively?

We want to ensure that the standard not only raises awareness, but gives organisations the tools they need to reduce risk, intervene effectively and encourage conversations, breaking down the myths and the stigma that talking about suicide causes people to feel. With help from the Government and colleagues in this place, we can all work together to achieve our ambition of seeing fewer people die by suicide.

--- Later in debate ---

[Liz Twist]

Can I tempt the Minister to go a little further? I specifically requested a roundtable to encourage take up of the standard. Is something that he can look at and mention to the other parties I discussed?

[Dr Ahmed]

My hon. Friend is trying to steal the conclusion of my speech, so I will bring it forward. I am always delighted to meet her, and she knows I am happy to contribute to any roundtable that she feels needs my attendance. I can charge my officials with the task of getting that organised.

Those community-based mental health centres are co-delivered with primary care specialist services that can be drawn on as required. People can receive psychological therapies, medication and other interventions, while also having access to expertise that can help with wider issues that may be impacting on their wellbeing and recovery, such as issues with housing, employment and peer support.

Our suicide prevention support pathfinder programme for middle-aged men will invest up to £3.6 million over three years in areas of England where middle-aged men face the greatest risk of suicide. It will support new ways of embedding effective, tailored support for middle-aged men within their communities and will create clearer, more joined-up pathways into existing local suicide prevention systems.

Today’s discussion has without doubt highlighted that suicide prevention truly is everybody’s business. Every person, organisation and service has a role to play. We can all do more to ensure that we are equipped with the skills that can and will save lives. Our suicide prevention strategy sets out a comprehensive, evidence-driven plan to reduce the number of lives lost to suicide across our country. It highlights the important role that employers and organisations can and should play in supporting their staff to get the support they need. Guidance such as the BSI’s “Suicide and the Workplace” standard brings welcome visibility to just how important that role is. I extend my thanks to everyone who contributed to and was involved in the development of the standard.

In conclusion, I know how personally painful debates such as this can be, but all hon. Members will know that the impact of these discussions goes well beyond the four walls of our Parliament and into the streets. That awareness is so important, and I am grateful to my hon. Friend the Member for Blaydon and Consett for securing this debate. I would be delighted to meet her and to organise the meetings I outlined.

Question put and agreed to.

Ehlers-Danlos Syndrome and Craniocervical Instability

Liz Twist Excerpts

Thursday 26th March 2026 Westminster Hall

[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.