Sudden Unexpected Death in Epilepsy

Dave Robertson Excerpts

Wednesday 22nd April 2026 Commons Chamber

[Dave Robertson (Lichfield) (Lab)]

I thank the hon. Member for bringing to light the Clive Treacey checklist, because it is a really fitting way to remember Clive. It is important to remember, however, that although it is named after Clive, he is not defined by his epilepsy; he was not defined by his learning disability and he does not need to be defined by his death. Clive loved to paint and was a really talented gardener, and his family are eager that he be remembered for those memories that they carry of him. I want to make sure that I take the opportunity to put that on the record.

It is also very clear from the Clive Treacey checklist that SUDEP risk for people with learning disabilities and epilepsy is three times higher—300%—but the actual risk of SUDEP can be cut by 84% if people have an annual check-up. That is part of what the Clive Treacey checklist advises NHS trusts to follow. I again thank the hon. Gentleman and invite him to do all he can alongside me—and, I am sure, many other Members—to make sure that every single NHS trust introduces and follows the Clive Treacey checklist to protect some of the most vulnerable people in our society.

[Olly Glover]

I thank the hon. Gentleman for his intervention and his tribute to his constituent, and I look forward to working with him and others on this issue.

The checklist, commissioned by NHS Midlands and developed by SUDEP Action, is designed for commissioners and providers of care. There is hope that it will be red-flagged in annual health checks for people with learning disabilities, as the hon. Gentleman has said. Despite the existence of this high-risk cohort, most families were, like Clive’s, unaware of SUDEP and epilepsy risk despite learnings from earlier deaths. They were never given the information they needed, and the mistakes of the past continue to be repeated. Recent research by the European Journal of Neurology surveying neurologists found that only one fifth discussed SUDEP with all patients. That speaks to an unacceptable systemic failure. More than 20 years after national guidance was introduced, young people and their families are still being left in the dark.

So what needs to be done? SUDEP Action has developed practical safety tools to empower neighbourhoods: the SUDEP and seizure safety checklist; the EpSMon app, which helps people understand their personal epilepsy risks; and the Charlie card to support risk reduction and communication across care settings. We know that where the adult checklist is used, the rate of SUDEP conversations has risen from 20% to 80% and risks have fallen. But the challenges are vast. Progress is fragmented, it is far too slow, and at a time of rising inequalities all too often the risks are getting worse. The series of prevention of future deaths reports into epilepsy reflects broader patterns: missed opportunities; a SUDEP and epilepsy risk communication gap; a failure to act; and a culture that too often fails to listen to families.

--- Later in debate ---

[The Parliamentary Under-Secretary of State for Health and Social Care (Mrs Sharon Hodgson)]

I thank the hon. Member for Didcot and Wantage (Olly Glover) for securing this important debate. At the outset, I will say that I am happy to meet him to discuss all the action points he raised at the end of his speech—and as for where that meeting will take place, we can discuss that.

Sudden unexpected death in epilepsy, or SUDEP for short, is a vitally important issue for those directly and tragically affected, and for many Members. We must learn lessons when deaths occur and make the changes needed. We must also ensure timely access to the right specialist support for people with epilepsy. We must tackle long waits for neurology appointments, and continue to build the evidence base, so that innovative treatments, such as medicinal cannabis, where clinically appropriate, are available in a safe and consistent way. I will set out the actions that we are taking with the NHS and partners to reduce risks as well as improve outcomes for people living with epilepsy.

First, there is a statutory duty for organisations to respond to a prevention of future deaths report issued by a coroner when their investigation identifies circumstances that create a risk of future deaths. That provides a clear mechanism for organisations to set out the actions that they will take to address those risks. Alongside the PFD process, it is essential that the NHS continues to strengthen how it identifies and acts to mitigate risk in day-to-day epilepsy care. That is why, when it comes to epilepsy, we are working with the NHS and partners to embed structured risk assessments and consistent risk communication in routine practice, so that known risk factors are identified early, addressed where possible, and discussed openly with patients and families, in line with best practice.

Cutting waiting lists, including for neurology services, is a key priority for this Government. We have committed to achieving the NHS constitutional standard, which is that 92% of patients should wait no longer than 18 weeks from referral to treatment, by March 2029. We have already delivered 5.2 million additional elective appointments in our first year in government. Waiting lists overall are coming down, but we recognise that they remain too high, with neurology remaining a particularly challenged specialty.

For patients with epilepsy, timely access to specialist advice, supported by clear referral routes and co-ordinated care across primary care, community services and hospitals, is critical to good outcomes. Nationally, NHS England’s neurology transformation programme developed a model of integrated care to support integrated care boards in delivering the right service at the right time to patients, as close to home as possible.

For those with refractory epilepsy who need highly specialised input, NHS England’s updated service specification for specialised adult neurology services is clear that specialised neurology centres must include services for the assessment and management of refractory epilepsy.

Progress is being made on the treatment backlog. Between February 2025 and February 2026, the number of incomplete neurology pathways reduced by over 10,000, the average waiting time reduced from 16.5 weeks to 15 weeks, and the proportion of patients seen within 18 weeks increased to 57.9%. We will continue to work with the NHS to improve access and reduce delays for patients, including those with epilepsy, and families.

Research is central to improving outcomes for people with epilepsy. The Department funds research into epilepsy through the National Institute for Health and Care Research—the NIHR—and, in the five years from April 2020 to March 2025, we committed almost £19 million to 15 epilepsy research projects. The NIHR welcomes applications on all topics, including epilepsy.

I fully understand why patients and families continue to press for safe and equitable access to medical cannabis, particularly for children with drug-resistant epilepsy. There is one licensed cannabis-based medicine, Epidyolex, that is available for prescribing on the NHS, where clinically appropriate, following clear evidence of its safety and clinical and cost-effectiveness. Most cannabis-based medicines that patients are seeking are unlicensed and have not been assessed for their safety, quality or effectiveness. Until the evidence base improves, the NHS will not routinely fund them, and clinicians will rightly be cautious about prescribing. That is why, through NIHR and NHS England, the Government are investing over £9 million in clinical trials of cannabis-based medicines for drug-resistant epilepsy, to strengthen the evidence and support consistent, safe decision making.

We know that around 30% of people with epilepsy have a learning disability, as my hon. Friend the Member for Lichfield (Dave Robertson) set out, and that the risk of SUDEP is higher for those with a learning disability. The most recent “learning from lives and deaths” report found that epilepsy was one of the most common underlying causes of death for people with a learning disability between 2021 and 2023. That highlights how crucial it is that information and support for patients with epilepsy who have a learning disability is tailored to their individual needs.

[Dave Robertson]

I thank the Minister for delineating everything that the Government are doing to support people with epilepsy. I was fortunate enough to secure an Adjournment debate a couple of months ago to talk about the Clive Treacey safety checklist. The Under-Secretary of State for Health and Social Care, my hon. Friend the Member for Glasgow South West (Dr Ahmed), said at the Dispatch Box that he expects every NHS trust to follow that checklist. Does she agree with him, and will she send the message that all trusts must follow that checklist?

[Mrs Hodgson]

I welcome the development of the Clive Treacey safety checklist. It is an important part of Clive’s legacy, notwithstanding the comments that my hon. Friend made about his legacy being much wider than that. We would encourage commissioners and service providers to use the checklist and its accompanying guidance as a key tool when designing services for their local populations, and to ensure that steps outlined in the checklist are followed whenever a patient experiences a significant change in their care. We hope that is being rolled out, followed and used.

At the national level, there are a number of programmes and tools supporting safer, more consistent epilepsy care. NICE guidance recommends that people with a learning disability have monitoring reviews at least annually, and information should be tailored and adapted. They should have access to specialist care and co-ordinated, multidisciplinary support. NICE is clear that where young people are transitioning into adult services, planning should begin early. While NICE guidance is not mandatory, the Government expect commissioners and service providers to take it fully into account when making decisions on how best to meet the needs of their local communities.

NHS England’s RightCare programme has developed an epilepsy toolkit to support commissioners and clinicians in improving epilepsy care and reducing preventable deaths. The toolkit makes structured risk assessment and risk reduction, and proactive conversations about SUDEP, a core part of guidance, and it signposts practical resources, such as the SUDEP and seizure safety checklist, to support consistent risk communication in line with NICE guidance.

Health Education England, which is now part of NHS England, has developed an epilepsy programme in collaboration with SUDEP Action. That includes evidence-based training modules, delivered through the NHS England e-learning for healthcare platform, covering practical diagnosis and management, medication adherence and SUDEP risk factors. Alongside that, Government-supported frameworks, including the national bundle of care for children and young people with epilepsy, are helping to drive more equitable access to timely intervention and rehabilitation.

In closing, I thank the hon. Member for Didcot and Wantage for securing this very important debate; it is great to see it so well attended. I thank all hon. Members who took part in it and made interventions, including my hon. Friend the Member for Bracknell (Peter Swallow), the hon. Member for Strangford (Jim Shannon), and my hon. Friends the Members for Stroud (Dr Opher), for Lichfield, and for Southgate and Wood Green (Bambos Charalambous). They made a number of very important points, and if I need to follow up on any of them with colleagues in other Departments or in my Department, I definitely will.

I also thank those with lived experience of epilepsy, and the families who have lost loved ones to SUDEP. Their courage in speaking out continues to drive change through the work that we do in this place. We will continue to work with partners across the health system to support people with epilepsy and, ultimately, reduce deaths from epilepsy.

Question put and agreed to.

Wheelchair Provision: Independent Review Body

Dave Robertson Excerpts

Tuesday 21st April 2026 Westminster Hall

[Dave Robertson (Lichfield) (Lab)]

What a pleasure it is to serve with you in the Chair, Dr Murrison. I thank the Backbench Business Committee for scheduling this debate and my hon. Friend the Member for Bexleyheath and Crayford (Daniel Francis) for all the work he has done not only to secure this debate, but to champion wheelchair users in his constituency and all of ours. We are lucky to have him on the green Benches.

As we talk about the provision of wheelchairs across the country, I want to share the story of one of my constituents. Dozens of constituents have written to me, but I want to draw this story out because it is a particularly jarring case of how the system is failing people. My constituent Lisa has a severe condition that affects her nerves. She cannot stand, feed herself or use the bathroom unaided, and she has a tracheotomy to help her breathe. In July 2024 she was referred to AJM, the company contracted to the NHS in Staffordshire at that point to provide wheelchairs. It took almost a year, and Lisa’s family contacting me for help, to even get her measured for an appointment by AJM. She was then told that it would be at least another year before she got the wheelchair that she needs. Without that, she can leave her house only for hospital appointments, because the chair that she had was impacting her breathing and putting her life at risk.

AJM did finally provide a better wheelchair in January 2025. It took 18 months—not 18 weeks, but 18 months—and Lisa still did not get the wheelchair she needed. She got a better wheelchair—a less bad wheelchair—but it still did not meet her needs. We are unsure of the timeline for when she will get the wheelchair that she needs to be able to live her life.

Lisa’s is not an isolated case. It does not surprise me that my hon. Friend the Member for Scarborough and Whitby (Alison Hume), who we have just heard from, has also had problems with AJM. We know that it is a national issue and that AJM is failing the people of Staffordshire. Indeed, I am sure my hon. Friend the Member for Stoke-on-Trent South (Dr Gardner) will raise a similar point shortly.

Since 2023, complaints to the Parliamentary and Health Service Ombudsman about that firm have shot up. To refer to the point made by the hon. Member for Strangford (Jim Shannon), it is very clear from looking at that data that there are systemic, nationwide failings. The ombudsman asked AJM to investigate but, from what we are hearing today and have heard previously in this place, sufficient action has not been taken across the country.

In Staffordshire, the local NHS commissioners issued AJM with a performance notice last August and have now retendered the contract, but until October the contract remains with AJM and, unless massive changes are made, it will continue to fail my constituents and those around the country. AJM has clearly lost the trust of people in our area. The long waits have had a really serious impact not just on the physical health of wheelchair users, but on their mental health and dignity, and on their friends, their families and the community that support them. We can never look at one person in isolation—it takes a family to raise a child and it takes a community for us all to be part of, and these effects have really serious impacts on entire communities as well as on wheelchair users themselves.

This is really not good enough. Staffordshire ICB has finally stood up and made the decision to retender the contract and award it elsewhere. However, my major concern is that this contract was not working, it was clear that it was not working and none of the interventions made it work. That is a real problem. It appears that, if everything works fine, everything works fine—but if things start to go wrong, what is the mechanism to fix them? How do we make sure that things are fixed?

The suggestion that there should be a national body to oversee wheelchair provision is one that would give my constituents and indeed all our constituents confidence that somebody will examine this issue, and that failings will not continue to be brushed under the carpet and ignored. They simply cannot be ignored. Wheelchairs are far too important to far too many people, and I place on the record my absolute support for the proposal.

Clive Treacey Safety Checklist

Dave Robertson Excerpts

Monday 17th November 2025 Commons Chamber

[Dave Robertson (Lichfield) (Lab)]

It is an honour and a privilege to lead this debate on Government support for the Clive Treacey safety checklist. I secured this debate in Clive’s name, and I want to start by telling the House a little bit about him. I did not have the pleasure of meeting Clive, so I am drawing here on the words of his family, who knew him best. Clive’s sister, and his father Michael, are in the Public Gallery this evening, and I am really glad that they are able to see proceedings. They have been tireless advocates for Clive, making sure that his voice is heard, and I hope that I can do their efforts justice tonight.

Clive was born in Lichfield, in my constituency, in 1969. He was soon diagnosed with a learning difficulty, and, between the ages of 8 and 10, with epilepsy. I will cover both those factors today. Sadly, they are important to understanding Clive’s death and the failures in care throughout his life, but they do not define what Clive’s life was. I want to ensure that the House hears who Clive was. Clive was a talented artist and gardener, gifted with a brush and able to make plants spring seemingly from nothing. He loved music, especially Elvis Presley, and was often singing and dancing—his family remember him as the life of the party. He wanted to work in a garden centre, helping to raise plants; to have his own home, close to family; to own a cat; to learn to drive; and to go on holiday to Blackpool and Somerset. Clive was as devoted to his family as they were to him. He was known as the family calendar, never forgetting a card for a birthday, Christmas, Easter or any other reason. Clive’s sister Elaine says that her brother was

“engaging, humorous, gentle, and loving”.

His parents, Pauline and Michael, have said his heart “knew no bounds”, and describe their son’s “magical qualities” throughout his life. In all the accounts of Clive, his love and optimism shine through.

Clive passed away in 2017 at just 47 years of age, after a seizure caused by his epilepsy brought on cardiac arrest. This is known as SUDEP—sudden unexpected death in epilepsy. Clive had been living in residential placements for years up until that point, moving often. Before he died, Clive’s family had become worried about his deteriorating health—and, tragically, so had Clive. He left a message on his dad’s phone, which was not received until some days after his death, saying that he was dying and needed an ambulance. Clive was not listened to, and his family were not listened to, and the consequences were devastating.

After that terrible event, Clive’s family had to fight hard for answers. They had to fight to secure an inquest into his death, and later to secure an independent review. When that review was completed in 2021, four years after Clive died, it confirmed what they had suspected all along: the independent review found that Clive’s care fell far short of what should be expected for somebody with drug-resistant epilepsy, and it identified multiple system-wide failures in delivering his care and treatment, which put him at greater risk. It found that his death was potentially avoidable, and that he had been failed both in life and in death.

What did that mean in practice? It meant that the management of Clive’s epilepsy was fragmented, and the link between his epilepsy and the sometimes challenging behaviours that he could exhibit when stressed, such as not taking his medication, withdrawing to his room, or not communicating, were often overstated. Those behaviours disproportionately impacted the generally held view that Clive required a hospital setting, and despite the fact that he had long expressed a wish to live in his own home, care in the community was discussed with him and his family only towards the end of his life. That is where Clive’s life was, and if we move on past his death, it is important to pay tribute to Clive’s family. Throughout all the suffering, they have been relentless in their focus on ensuring that other families do not go through what they had to. That is why we are here today, and for me, that is entirely what this debate is about.

[Jim Shannon (Strangford) (DUP)]

I congratulate and thank the hon. Gentleman for securing this debate. His choice of words, his tone, and the compassion in his voice are a real tribute to Clive Treacey, and to his family in the Gallery. The hon. Gentleman has paid a wonderful tribute to Clive, and it is right to put that on the record. I am an Elvis Presley fan as well; he could probably sing better than I can, but that is by the way. Does the hon. Gentleman agree that although nothing can bring back the life of this young man, his legacy can be life-changing for so many others? This checklist, rather than being best practice, must be rolled out as a recommended tool to each trust and area of this United Kingdom of Great Britain and Northern Ireland, as a tribute to Clive Treacey.

[Dave Robertson]

I thank the hon. Gentleman. That is my first intervention from him. He raises an important point, and when he asked that question, I thought back to a couple of weeks ago, when I was asked at a community event, “What gives you hope, Dave?”. I thought for a while. So often, we hear in this place stories of people who have gone through unimaginable hardship, but who somehow find the strength within themselves not to turn that into anger. They do not turn inwards; they turn outwards, and campaign to make sure that the same does not happen to other people. That is an example of what we have here. It is the very best testament to the human spirit that we see so many people who are able to do that.

Like a quarter of people with a learning disability, Clive had epilepsy. By contrast, one in 100 of the general population has epilepsy. Coupled with that, epilepsy is the second most frequently reported preventable cause of death for people with a learning disability, so not only are people with a learning disability more likely to have epilepsy, but the risks they face from their epilepsy are higher. The risk of SUDEP—that is what killed Clive—is more than three times higher for those with epilepsy and a learning disability than for those with epilepsy and no learning disability.

Tragically, Clive’s case is not an isolated example of these failures; this is a story that is far too common across the country, but there are things that we can do to change the story. Research suggests that annual health checks can significantly reduce the chance of premature death in people with a learning disability and autism who have epilepsy. Indeed, the chances of death were reduced by 84% for people with a learning disability and epilepsy who had a review of their epilepsy in the past 12 months.

That brings me to the Clive Treacey safety checklist. The checklist is a tool developed after Clive’s death, and an important part of his legacy. I place on record my thanks to Professor Mike Kerr and Professor Rohit Shankar for their work on the checklist, alongside the charity SUDEP Action, NHS England Midlands, and the Cornwall partnership NHS foundation trust.



The checklist was designed for commissioners and service providers, whether the care is provided in a specialist hospital setting or out in the community, and it outlines the steps that should be gone through annually, as well as whenever a patient moves between services or has a big change in their care, such as a new team looking after them. It recommends up-to-date health plans, genuine consultation with parents and families—not box ticking, but genuine consultation—and proper epilepsy training for staff. The Clive Treacey safety checklist is not a document that should be put in a drawer somewhere in an integrated care board, left alone and looked at once every so often when someone asks a question about it. It is a practical tool and the accompanying guidance, at just 24 pages long— for the NHS, a short story at best—is packed with information, and it is a document that can save lives.

Since Clive’s death, a number of NHS regions have reviewed the way that they care for patients with learning disabilities and epilepsy using the checklist. That includes the NHS in the midlands, where 11 integrated care systems carried out a detailed appraisal using the self-assessment tool developed by the charity Epilepsy Action, based on the work of Professor Shankar, to find the weaknesses in their services and take concrete steps to improve them. More recently, six integrated care boards in the north-west, north-east and North Yorkshire have done the same. It is detailed work, bringing health and care services together, and using joined-up thinking, which we do not hear enough about in Whitehall, to tackle the problem and normalise best practice. That best practice, like the Clive Treacey safety checklist, should be more widespread. I again pay tribute to Elaine and to Clive’s family more broadly for the work that they have done to drive this entire piece of work forward.

The problem is that we still have a postcode lottery. Different parts of the country do and do not follow the checklist; different parts of the country have and have not gone through that detailed work to update their practices. In this House, we cannot tolerate a situation where local outcomes are so varied, so I hope that we hear from the Minister what more we can do, both here in this place and through the Department of Health and Social Care, to ensure that people with learning disabilities are not dying of preventable causes, and to see the very best practice, as set out in the Clive Treacey safety checklist, adopted up and down the country, so that we can end this perverse postcode lottery.

Baby Loss

Dave Robertson Excerpts

Monday 13th October 2025 Commons Chamber

[Dave Robertson (Lichfield) (Lab)]

I place on record my thanks to the co-sponsors of today’s debate and to all Members who have shared their personal experiences. It has been a very difficult debate for many of us on such an important but such a difficult subject.

Like many Members today, I am here to speak on behalf of my constituents. Tim and Hannah lost their son Zack when he was just 14 hours old. Zack’s inquest found that there was a total and complete failure in his care. I genuinely do not know how parents can receive an inquest verdict like that and find the strength to put themselves back together, but Tim and Hannah did—I am sure that is something we will see in many of the people in the Gallery today. They found the strength to put themselves back together and start looking to what comes next.

Zack’s story is that he caught a group B strep infection as he was born. It is incredibly common—20% to 40% of women have it on any given day—and it is generally symptomless in adults, but if it passes from mum to baby during labour, it can be fatal. On average, one baby a week in the UK dies of a strep B infection. Group B strep is common in mums and highly dangerous to babies, but the UK does not routinely test for it during pregnancy. Instead, we rely on risk factors to identify expecting mums who have it, and too often—as in Zack’s case—that approach is not working.

I am pleased that a major trial, the GBS3 trial, is under way to look at whether we would be better off routinely testing, and is due to report later this year. It is no overstatement to say that that trial is a once-in-a-lifetime opportunity to look at our approach to the safety of babies in this situation. I really hope that it reports and moves us towards a situation in which we can routinely test for this condition during pregnancy. The gold standard test costs just £15, and can save lives—potentially, a life a week. We must do all we can to protect babies like Zack and ensure that no more parents go through what Tim and Hannah have had to.

Maternity Services

Dave Robertson Excerpts

Tuesday 25th February 2025 Westminster Hall

[Dave Robertson (Lichfield) (Lab)]

It is a pleasure to serve with you in the Chair, Sir Christopher. I thank the hon. Member for Chichester (Jess Brown-Fuller) for securing this debate. Fundamentally, it is about giving kids the best start in life and giving mums the best care. There are few subjects of more importance to us, right across the House.

The evidence is clear that midwife-led maternity units are great for babies and mums. They are every bit as safe as the big hospitals we have heard many hon. Members talk about today, and one of the benefits they offer is the option of a more natural birth, with less intervention from health professionals, unless it is necessary. Mums who deliver in a midwife-led unit are less likely to need a caesarean or help from forceps or a vacuum. While those procedures can be life-saving, and we should thank the people who use them every day to support babies into this world, they come with downsides. Caesareans increase the risk for mums, including haemorrhage, blood clots and infections in the womb, and they take much longer to recover from. The potential side effects of forceps and vacuums are less severe but are, nonetheless, very real.

As the hon. Member for Epsom and Ewell (Helen Maguire) said, choice is important for mums. So that people can have the birth they want, we should make sure that, when they come to the end of their pregnancy, they can choose where they want to deliver—be that at home, in a more clinical setting if there are additional risks, or in a midwife-led unit.

In Lichfield, we were lucky enough to have a fantastic midwife-led maternity unit at Samuel Johnson community hospital. The unit was closed during the pandemic for reasons we all understand, given the national crisis, but it has never reopened. The closest maternity unit is at Queen’s hospital in Burton, 11 miles up the A38. When High Speed 2 is not destroying the transport infrastructure in my constituency, that is not necessarily a significant trip in an ambulance, but it presents barriers to those who do not have access to their own transport. It is currently the only option available to people in Lichfield.

However, mums in Lichfield will soon not be able to choose that midwife-led unit because it is on the chopping block. That would be a huge loss. The service gives women in Lichfield, Burntwood and the surrounding villages somewhere close to home to deliver in a calmer, quieter setting than the big hospital. Where that is appropriate, I think everybody in this room, and people much more widely, would want to support it.

Shutting the midwife-led unit would mean less choice for mums, and potentially worse outcomes for mums and babies. I have met many people whose children were born in that unit and who are so happy to have had the option. When I mentioned that I was taking part in this debate, one of my staff members said, without prompting, that she had had four kids—two in the clinical setting of a big hospital, and two at the Samuel Johnson community hospital. She was so much happier with her experience in the midwife-led unit. She was not, in any way, talking down what happened in the other hospital, but the more natural, quieter and more relaxed environment was a benefit as she was going through childbirth.

I thank everybody who works in maternity services, and I particularly thank those who champion midwife-led units.

Speech and Language Therapy

Dave Robertson Excerpts

Monday 27th January 2025 Westminster Hall

[Dave Robertson (Lichfield) (Lab)]

I beg to move,

That this House has considered e-petition 657935 relating to speech and language therapy.

May I say what a pleasure it is to lead this debate with you in the Chair, Mr Vickers? Before I turn to e-petition 657935, I beg your indulgence to mention that today is International Holocaust Memorial Day and the 80th anniversary of the liberation of Auschwitz-Birkenau. Given that it is possibly the last significant anniversary on which many of the survivors will be with us, it is really important that we mark today, because we must never, ever forget the crimes that were committed in the early part of the last century. I stand four-square behind the work of the International Holocaust Remembrance Alliance in making sure that we never forget and that we can turn darkness into light.

Today I am introducing a debate on a topic that we so often take for granted, particularly those of us who have the opportunity to contribute to the debate. Communication, and our ability to speak and to put our views on the record, is fundamental. It is fundamental to Members of Parliament because of the job that we do, but it is also fundamental to everybody across this country and, in fact, across the globe. The power of communication is in our ability to speak and to express our thoughts, our feelings, our hopes, our needs and our politics. In its simplest definition, it is how we connect with each other.

For some people, however, it is not so simple. The words, feelings and thoughts are there, but they cannot quite find how to get their words out. That is so difficult for many people, and we should never overlook it, because every single human being has the ability to communicate and a need to connect with people. Supporting people to make sure that they can always find the words, and that they can always communicate and reach out to others, is something that I am sure everybody would support.

That is where speech and language therapy steps in—not just as a treatment, but as a lifeline and a way to help people to find the words. It is about helping people to find their voice and to overcome the barriers that keep them from being heard. If we cannot communicate, we can feel invisible and alone, which is a huge challenge in itself. Speech and language therapy is more than just a clinical service; it is absolutely vital to a huge number of people across this great country. It is the bridge between silence and expression, and between isolation and inclusion. Speech and language therapists are the unsung heroes who help people to rediscover their ability to speak, to listen and to engage with the world, regardless of whether they are a child who struggles to form words, an adult recovering from a stroke, or someone with a lifelong condition that affects communication.

Last week, I had the great privilege of speaking to Mikey, who created this fantastic petition. One thing that struck me in that meeting was not just how thoughtful, well prepared, well read and on top of every single part of the issue he was, but his determination that this debate should not just be about him. It is not about Mikey’s treatment or his journey, although he is very able and willing to discuss them with people; it is about Mikey standing up for people who find themselves in a similar situation to him. When we meet somebody who is a true campaigner, and who is willing to spend their time and effort supporting people across their community, we should applaud them. I place on the record my thanks to him for his work.

When I spoke to Mikey, he told me that he is actually one of the lucky ones. A year and a half after he was diagnosed with apraxia, he was offered an hour of speech therapy a week. That was a huge boon to Mikey’s ability to take part, develop and just be part of the world. He feels lucky for that one hour, because the ability to access speech and language therapists is a postcode lottery, but it should not be a matter of luck. Getting help for something so important should be a minimum; in fact, the Royal College of Speech and Language Therapists recommends four sessions a week for Mikey’s condition. Mikey raised that not because he did not feel supported, but as an example of the fact that current provision and support do not meet the need, even for people like Mikey, who, in his own words, is lucky to have the support that he has had.

Just over 23,500 adults and more than 67,000 children and young people are on a waiting list for speech and language therapy. Every one of those lives can be touched and immeasurably improved by ensuring that they have the treatment they need to rebuild the confidence that they may have lost. Mikey told me that, after his treatment, his confidence has grown, he is less anxious, he is able to speak publicly with strangers and friends, and he has been able to get a job and catch up in education. That is all down to the speech and language therapists who have supported him to reach his goals. Not everything is down to the therapists, obviously—Mikey is responsible for a huge amount of what he has done—but his ability to express himself, and to show the world where he is coming from and what he does, is down to the language therapists who have supported him.

I met representatives of the Royal College of Speech and Language Therapists and Speech and Language UK last year, and the most striking thing that came out of those meetings was how important it is to look at this issue through the lens of social justice. The most striking piece of data that they shared is that 25% of all children, when they go to primary school, have some form of diagnosed or undiagnosed speech, language and communications need. If one looks at the most deprived areas of the country, that percentage rises to 50%.

On top of that, more than 60% of children in young offender institutions have communication difficulties. That information—that reality—is too stark to be an accident; something could be driving that. Reaching out and ensuring that people can express themselves and engage with the world at large, whether that is school, friends or family, can support them to access the world and prevent them from going down a path that could end with them making some difficult decisions and finding themselves incarcerated.

However, it is not just about young people; it is also about adults who develop conditions such as dementia, Parkinson’s, which is close to my heart, or long covid, which we will be talking about a lot over the coming years in the post-pandemic world. The speech and language difficulties that can come with long covid have driven demand since the pandemic, although there was significant demand for speech and language therapists before that.

I will touch briefly on Parkinson’s, because a close family member—my mum—suffers with it. Mam learned English to go to school, as her family spoke Welsh at home, and since she moved to England, where she brought up me and my brothers, she has spent her whole adult life communicating in her second language. Mam was also fluent in French. Seeing where she has gone with her Parkinson’s—just not being able to find the words—is a real challenge for all of us who know her. Helping her to find that word and communicate is something that I think everybody who knows her would support, and I am sure that anybody with a relative in a similar position would also be eager to support them with that.

Parkinson’s UK did an audit of its members in 2022 and, of the people it spoke to, just 40% had access to speech and language therapy. Only 15.5% were referred to therapists at the diagnosis stage and only 8% were seen. That is one example—I beg the House’s forgiveness for raising one of such significance to me; I picked it because that is where I have a lot of direct experience—but there are many, many conditions that can be supported through speech and language therapy.

Returning to the postcode lottery that I mentioned, there are areas of this country where integrated care boards are spending less than £1 per person receiving therapy—I think 58p was the smallest number that I saw. In the best-funded area for speech and language therapy, the ICB was spending £16.35 per child who was receiving therapy, which is a vast difference. Now, I am not going to say that ICBs are not doing their job; we are all aware that there are regional disparities and that ICBs have to cut their cloth according to the funding available. When we see such a significant disparity, however, with around 30 or 32 times the amount being spent in one area compared with another, it highlights that for far too many people, it is a real fight to get the support that they need because the funding is not there.

In the Minister’s response, I am interested to hear whether anything can be done in the long-term 10-year health plan for the NHS to set minimum standards or whether the Government intend to level the playing field between different areas. Many people, especially those from disadvantaged communities, live in areas where services are scarce and where waiting times are long. That can exacerbate some of the issues faced by those communities, as well as by the individuals affected.

We know that it is not always about just funding or putting more money into the system. Where money is needed, it should be there, but recruiting and retaining speech and language therapists is vital. No amount of funding in the world can replace a human being actually doing that role, or the skills, training and care that they provide for the people they are supporting.

There is a shortage of therapists in our system, and many are leaving the profession due to burnout, insufficient support and unsustainable workloads. When I spoke to the royal college, it was absolutely clear that recruitment is one side of the coin, but retention is the other. It is not just an operational necessity, but how we increase the number of speech and language therapists available and make sure that the more experienced people can train, support and mentor people who are less experienced to get through those grades, from grade 5 to grade 6 and so on.

A survey by the royal college found that 17% of speech and language therapy roles are currently vacant. That is a huge number: almost one in five. Ensuring that we have the right number of people to support the vital care that people need would have a profound effect across the country. The biggest shortages are in bands 6 and 7 in the NHS, which are the more specialist roles.

Across the board, therapists are saying that they want to do the job. Nobody goes into healthcare for the money, but because it is a vocation and they want to support their community and support people where they need it. To support them, however, we have to do something about caseloads to ensure that they can devote enough time to each person they see.

I am proud that the Government will bring forward a 10-year plan to offer a vision of a healthier, more resilient NHS. However, given how well supported this petition has been and how important speech and language therapy is for people who need it, I am very eager to hear that the Government are taking the issue seriously and making sure that speech and language therapy is fully integrated into that 10-year plan, so that we can look much more at preventive care, get community services to deliver support where it is most needed, and prevent those acute issues developing.

I am very glad to see so many hon. Members from both sides of the House in the Chamber. Ultimately, this debate is an opportunity for us to talk about speech and language therapy, and to make sure that it has the place that it deserves at the heart of our health system. I am sure that there is much more that other hon. Members will want to say, and I look forward to the contribution from the hon. Member for Meriden and Solihull East (Saqib Bhatti).

[Several hon. Members rose—]

--- Later in debate ---

[Dave Robertson]

I place on record my thanks to all the hon. Members who have contributed to the debate, starting with the hon. Member for Meriden and Solihull East (Saqib Bhatti), who made an excellent contribution, as I think we would all expect. I congratulate him on his campaigning on this important issue. I thank my hon. Friend the Member for Wolverhampton North East (Mrs Brackenridge) for raising the story of her constituent Samantha, who I am sure will be watching the debate closely.

I thank the hon. Member for Leicester South (Shockat Adam) and my hon. Friend the Member for Hyndburn (Sarah Smith) for reminding us of the importance of supporting the next generation and all those who come after. I thank my hon. Friend the Member for Altrincham and Sale West (Mr Rand) for raising the issue of unacceptably long wait times for speech and language therapy. I thank my hon. Friend the Member for Stoke-on-Trent North (David Williams) for highlighting the caseload faced by speech and language therapists in Stoke-on-Trent and the great county of Staffordshire. I also thank my hon. Friend the Member for Dulwich and West Norwood (Helen Hayes) for discussing the need for early intervention and the remarkable impact that it can have.

I thank my hon. Friend the Member for North Warwickshire and Bedworth (Rachel Taylor) for the story of her father’s experience in speech and language therapy. I thank the Liberal Democrat spokesperson, the hon. Member for Winchester (Dr Chambers), for his excellent contribution on the need to raise awareness around aphasia, which does not necessarily get spoken about enough in the community.

I thank the hon. Member for Sleaford and North Hykeham (Dr Johnson), on behalf of His Majesty’s official Opposition, for her considered remarks and for avoiding making the issue a political football. It is really important to highlight where we do agree, because there is often more agreement than people realise in this place. By working together, we can achieve those goals.

I especially thank the Minister for Care, my hon. Friend the Member for Aberafan Maesteg (Stephen Kinnock)—did I get that right?

[Stephen Kinnock]

Not bad.

[Dave Robertson]

Mam never quite got round to teaching me the Welsh that she speaks. I thank the Minister for his kind words about her and for outlining the complicated funding scenario that currently exists for speech and language therapy, along with the Government’s desires for the future of this therapy as an example of the three shifts that the Government will introduce in the NHS, and the need for people to engage thoroughly with the NHS 10-year plan consultation as a vehicle to securing those changes.

I thank the Petitions Committee for allowing me to lead the debate. It has been a real pleasure, not least because my constituency was the fourth most supportive of the petition. Finally, on behalf of all hon. Members who have been able to contribute today, I say an enormous thanks to Mikey, without whose campaigning we would not be here discussing this issue.

Question put and agreed to.

Resolved,

That this House has considered e-petition 657935 relating to speech and language therapy.

Hospice and Palliative Care

Dave Robertson Excerpts

Monday 13th January 2025 Commons Chamber

[Dave Robertson (Lichfield) (Lab)]

I thank the hon. Member for Wimbledon (Mr Kohler) for securing this debate. Like many Members here, I am here to talk about my local hospice. Just over the constituency border in Whittington, St Giles hospice has been doing its vital work for more than 40 years. However, 2024 was a challenging year for the hospice, with rising costs, plus the impact of the cost of living crisis making fundraising more difficult, leading it to make some impossibly hard decisions last summer. St Giles had to close one of its wings and make a number of redundancies among its clinical staff. That was due not to reduced need across Lichfield, Burntwood, the surrounding villages and further afield, but only to the financial situation that the hospice faced.

I commend my constituent Sean Collins, who is leading St Giles’s urgent funding appeal. The hospice supported Sean and his children following the loss of their mother and wife, Felicity, at just 38 years old. I am not sure I would be strong enough to turn that tragedy into something as positive as Sean has, but he has all my support.

The generous donors to St Giles do so much to care for people they have never met with their donations. In a recent meeting with Elinor Eustace, the CEO of the hospice, she mentioned how much she values all that they do, but said that she does not want to have a fully funded model, because of the value that fundraising brings to the entire community around the hospice. Having said that, Government support is essential to making sure that hospices across the country can continue to do everything they do for all our communities, so I welcome the £100 million of additional funding that the Government announced just before Christmas. However, we must find ways to ensure that all hospices remain sustainable in the long term.

St Giles receives just 18% of its funding from the NHS, which is less than £1 in every £5 when the national average is £1 in every £3. Levelling that playing field cannot come fast enough. In addition, St Giles has to deal with five different integrated care boards. That is five different NHS organisations for five different geographies, all with different funding formulas, different grant processes, different reporting mechanisms, different key performance indicators and different timescales. That is all for grants that add up to nothing more than an administrative nightmare. Simplifying and standardising that process will ensure that St Giles can spend less time securing grants from the NHS and more time on caring for the community in my constituency and further afield. I ask the Minister to look very closely at that point, because there is a real opportunity to secure significant benefit for hospices across the country.

Musculoskeletal Conditions

Dave Robertson Excerpts

Tuesday 17th December 2024 Westminster Hall

[Sonia Kumar]

I agree with the hon. Gentleman. I have worked in paediatrics where many patients get diagnosed late and suffer with late onset. That affects their whole life from the beginning, including their ability to get involved with physical activity and to build relationships, or their mental health and sleeping patterns. Getting an early diagnosis is one of the solutions I want to put forward. I would like the Minister to consider involving physiotherapists from early on, at nursery stage, to find out why we are not picking up MSK conditions from a really young age so that we can provide health and wellbeing from day one.

[Dave Robertson (Lichfield) (Lab)]

I hear my hon. Friend’s point about early intervention and making sure that we diagnose MSK conditions as soon as possible. A member of my extended family suffers from pregnancy-related osteoporosis, which needs to be picked up as soon as possible so that appropriate treatment can be put in place and mothers supported through it. A new charity has been set up specifically for pregnancy-associated osteoporosis, and it is pushing for the #MeasureThatMum campaign to make sure that midwives are trained to pick up the condition at that point, as early as is physically possible. Does my hon. Friend support that?

[Sonia Kumar]

Of course. One of the things MSK physiotherapists look at is spinal fractures, 70% of which happen in the thoracic spine, generally in older women who have had poor bone health. It is essential to look after bone health from a really early age, while women are in their 40s, so that when they are older, in their 50s, 60s, 70s and 80s, they are on the right medication and doing bone health exercises to help for the future. For MSK conditions and osteoporosis, physiotherapists are essential. Spinal fractures are very often undiagnosed, and those who suffer spinal fractures as they get older are more likely then to have a hip fracture, after which the mortality rate becomes really high. My hon. Friend makes a very good point.

Let me explain why MSK physiotherapists and MSK care are so important. By 2035, two thirds of the population are expected to have two or more long-term conditions, which include MSK conditions. Versus Arthritis reports:

“Arthritis and related musculoskeletal conditions affect 20.3 million people in the UK.”

That means that one in six people has arthritis, which is a staggering amount. MSK conditions cost the NHS £5 billion a year, accounting for one in five GP appointments, 1.6 million hospital admissions and 30 million prescriptions a year. People with low confidence who feel that they cannot manage their conditions are more likely to attend hospital, while those who are most confident with long-term conditions have 38% fewer hospital admissions.

That is what we can do for the economy, but this issue is also about first-contact practitioners, as I mentioned at the beginning. With first-contact practitioners, we can save so many GP appointments. It is part of the long-term plan, which has been created to improve the impact on GP care and allied health professions that work in general practice. Working adults with MSK conditions are twice as likely to be economically inactive compared with those with long-term conditions. Of the people who are economically inactive due to ill health, 21% report having MSK conditions. It is about not just health but the economy and the wellbeing of the society that we are hopefully building together now that we are in government.

It is really important that we look at this issue in a holistic way. MSK conditions affect not just affect somebody’s mental health but their relationships and how they build them. They affect whether they can get into bed and sleep well, as well as their sleep hygiene. Perhaps a person eats poorly because they cannot get out, so they put on lots of weight. A person’s emotions, self-esteem and ability to work can be affected. I do not believe there is a silver bullet or that if we manage MSK conditions it will just fix one part. It has to be effective in respect of all the facets of somebody’s general wellbeing. We cannot tackle waiting lists and return people to work without that, and we need a strong workforce to plough back into the economy. It is incredibly important for people to understand that it is about holistic management and how we can improve health literacy and self-efficacy for people with MSK conditions.

I came to this debate to talk about solutions, as I am a solution-led person. We need to recognise the allied health professions in the NHS and build a workforce for MSK physios. That includes not just MSK physios but paramedics, podiatrists and every single person in the 14 allied health professions, all of which help to build resilience in the NHS, reduce waiting lists and build a healthier society.

MSK assessments need to happen from day one in nursery. We cannot expect paediatrics or care to be delivered well if we wait until the future, look back and say, “We should have done a better job when that person was younger.” If we looked at MSK conditions from day one—early in a child’s development and in their early years of support—there would not be a massive impact on society later in that person’s life because of having to do delayed diagnosis with multiple appointments and to look after their general wellbeing.

We also need to embed into society notions of what good health looks like from day one. That includes keeping active, going to classes and going to rehabilitation. We need a bigger awareness campaign about what being well looks like. It should not just be that the person leaves school and that is it; it needs to be lifelong. In the same way that people do continuous professional development, they should learn what looking after their body entails, and that should be translated into health policy.

We also need to increase the scope of physiotherapists’ practice. At the moment, they do not do DEXA scans, but they look at bone health in every other way. We look at X-rays, and work in fracture clinics, rehabilitation and trauma orthopaedics, but we do not look at the full picture of bone health. Will the Minister consider inputting that in future?

We need to increase the roll-out of community appointment days. We must provide same-day services for patients, including assessments, advice, health promotion and rehabilitation, and the community and volunteer sectors should provide support in a non-medicalised environment. If somebody has shoulder, knee or back pain, there should be a one-stop shop where they can be assessed appropriately, and they can then move on and get the right care at the right time.

We also need to put community care services on high streets and in places of worship. There are people who are not getting access, and there are massive health inequalities, so how do we promote care and health in difficult-to-reach communities? I would love to see care being put into places of worship and other locations people do not normally think of. I very much welcome the fact that the Government are already moving away from hospital care.

We also need to increase the number of first-contact practitioner places. A consultation with an FCP physio is £30 cheaper than the traditional GP-led pathway. MSK issues are one of the most common reasons to visit GPs, accounting for about 20% to 30% of appointments. Will the Minister meet me to discuss more of the solutions that I think need to be put forward to manage MSK issues? Would he be happy to visit my constituency to look at our fracture liaison service? I hope we will continue to fund that and that the service will be rolled out nationally.

Access to Primary Healthcare

Dave Robertson Excerpts

Wednesday 16th October 2024 Commons Chamber

[Dave Robertson (Lichfield) (Lab)]

I congratulate the hon. Member for Newton Abbot (Martin Wrigley) on his excellent maiden speech. I am sure he will be a fierce advocate for the people of Newton Abbot and the surrounding area over the coming years. I look forward to working with him.

I am very glad to be able to speak in this debate, because primary care is an important issue that affects all our constituents. During the election campaign, it was absolutely the No. 1 issue that came up on the doorstep across Lichfield, Burntwood and the villages in my constituency.

We are effectively here to discuss the centralism and poor decision making that typified the last decade and a half of incompetence by the Conservative party on primary care. There can be fewer more obvious examples of that than the fate of Burntwood health and wellbeing centre in my constituency. The building was home to a GP surgery serving almost 5,000 residents in the town. The contract for the surgery expired in March last year, but no replacement facility was ready for that date. The surgery could not move, which meant it had to close. The building itself is still in use by the integrated care board and the practice was happy to seek an extension, but that was not allowed by NHS England.

As a result, more than one in eight people in the town have had to be redistributed to other surgeries because a process in London did not allow organisations in Staffordshire to deliver the best solution for my constituents. It is centralist and wrong. It was wrong then and it is wrong now, and it needs to change. Even worse still is that the proposed replacement facility, originally scheduled for completion in October 2023—last year—is nowhere near ready. We are expecting planning permission sometime in early 2025 and who knows when it will actually be completed.

This is such an important issue for my constituents in Burntwood, as we all know the potential knock-on effects that delays in accessing primary care can cause. The staff at the remaining surgeries are doing all they can to support the community, but at some point increased patient rolls like this cannot be mitigated. It is one example of the challenges people face in seeing a GP. It is not the only one in my constituency and very far from being the only one across the whole country. It cannot be fixed overnight; 14 years of it going wrong will take longer than 14 weeks to fix. However, I applaud the Health Secretary for going as far as he has so quickly: cutting red tape to allow 1,000 new GPs to be taken on and commissioning the Darzi review of the NHS so that this party, the one that created the NHS, can ensure that we build a health service that is fit for the 21st century.

[Madam Deputy Speaker (Caroline Nokes)]

I thank the hon. Gentleman for not using all his time. I call Tom Gordon to make his maiden speech.