Down’s Syndrome Regression Disorder

Tuesday 8th July 2025 Westminster Hall

16:30

[Jen Craft (Thurrock) (Lab)]

I beg to move,

That this House has considered Down’s syndrome regression disorder research.

I am honoured to serve under your chairship, Sir Jeremy.

Down’s syndrome regression in a mild form is not uncommon among people with Down’s syndrome. It represents the loss of previously acquired developmental skills, which can include a slight decline in the ability to speak, reduced interest in social activity, or increased dependency on caregivers. With the right care or behavioural support, people experiencing mild regression often make a complete recovery, and yet in a small proportion of people with Down’s syndrome, there is a much more dramatic and devastating loss of skills.

The regression such people experience is profound and the onset stark. Typically, it occurs in young adults, who almost overnight can retreat into themselves and become uncommunicative, catatonic and uninterested. As more medical professionals have encountered that aspect of Down’s syndrome in the past 20 years, it has become known as Down’s syndrome regression disorder.

[Josh Dean (Hertford and Stortford) (Lab)]

I am grateful to my hon. Friend for securing this important debate. My constituent Ruth’s son has DSRD, which has impacted his mobility, and means that he is prone to outbursts and is struggling to access education. It took a long time for Jude to be diagnosed. In the UK, I understand, no diagnostic or treatment plan is in place. Does my hon. Friend agree that research into the area is critical and that, were a neurotypical person to present with such regression, it would be treated as the medical emergency that it is?

[Jen Craft]

Without wishing to get ahead of myself in my speech, I very much agree with my hon. Friend. I also add my thanks to Ruth for sharing her and Jude’s story. It had a significant impact on me when I heard it.

As I was saying, the condition is truly horrific, and it has been largely under-researched and overlooked. Existing studies of Down’s syndrome regression disorder are few and far between. A study in 2021, “A systematic review” by Walpert, Zaman and Holland, examined the existing body of work. It identified that cases of extreme regression have often been wrongly dismissed as a late diagnosis of autism or early-onset dementia, but the nature of those conditions and the age at which they present are categorically distinct from regression disorder. Symptoms of autism present in early childhood, while dementia typically causes a gradual loss of skills from the age of 40 upwards. Neither of those condition profiles matches the dramatic loss of developmental skills in young adulthood caused by Down’s syndrome regression disorder.

While no single cause has been identified, a clear trend is that significant life events can closely precede the onset of regression disorder. The 2021 review found that the most common example was a change in environment, such as leaving school, moving home or being separated from parents. Other life events, such as a death or serious illness, were also identified in the data. The lack of research presents challenges in diagnosis. There is no consistency in the naming and definition of regression, hindering the clinical recognition and study that is a necessary precursor to evaluating treatment. As a result, no condition-specific care is available in the NHS.

Without proper understanding and in the absence of treatment, the human impacts of the condition are terrifying. Families helplessly watch their child become almost unrecognisable in the space of months, weeks or even days. Young people who have previously held down jobs or voluntary positions, and who led rich lives with interests, hobbies and friends, lose everything.

I will mention the story of Fran, who had just started secondary school when she was involved in an incident when one of her peers hurt and threatened her. As her mum Cristina described, the altercation caused Fran to shut down. Over a few days, she refused to engage in anything. Cristina was alarmed and took her daughter to the GP, who found high thyroid levels. Fran was prescribed thyroxine, but that only made her condition worse. She soon stopped talking altogether, and she only signed. Having been attending a mainstream school, she lost her independence. She wanted to be held the whole time, would not make eye contact, and was vacant behind the eyes. Cristina said she looked lost and sad.

After many more blood tests the thyroxine was stopped, and a referral to Great Ormond Street hospital was made for specialist help. As time went on, Fran slowly began to talk, read and write again, but nowhere near her previous standard. Great Ormond Street has carried out further tests, and the doctors believe that she has suffered trauma, which has caused her regression. Cristina says she just wants the old Fran back.

For Olivia’s story, she was 16 when she began to display symptoms of regression. As her parents Dimitri and Viviana have set out, Down’s syndrome regression disorder transformed their once vibrant, semi-independent daughter into someone they barely recognised. Prior to the onset of symptoms, she was engaged in school, participating in swimming lessons and actively engaging in family life. Now, her parents say it is as if she exists in a parallel world, spending most of her time isolated in bed and disconnected from life. She becomes distressed doing basic daily tasks, with screaming and physical resistance. They said their happy, loving daughter who once thrived has disappeared.

Through research online, Dimitri and Viviana identified Olivia’s condition as potential regression, and found themselves in the unprecedented position of having to educate healthcare professionals about the condition. Since, the paediatrician and neurologists have agreed with that diagnosis. As the mother to a daughter with Down’s syndrome, I cannot begin to imagine the torture of seeing your child’s personality slip away before your eyes, to then be met with only confusion and uncertainty when seeking professional support.

Parents of children with regression disorder often describe being bounced around the system between NHS services and staff, as few practitioners have the expertise to diagnose properly. When they finally manage to speak to the right clinician, some are even told to take their child to A&E. I do not say that to criticise healthcare professionals, but rather to highlight that they need to be given the right tools for the job—the right guidance and training—and to suggest that doctors should be able to say, “I do not know what this is,” when faced with a seemingly unique condition, instead of attempting to rule out every practical possibility.

The challenges faced by parents of children with regression disorder speak to a wider point: people with learning disabilities can be treated differently by our healthcare system, with their needs all too readily overlooked and their symptoms far too often attributed to their disability by clinicians who simply do not know them. As we all know, if a neurotypical child stopped eating and speaking overnight, or if they became incontinent, catatonic and lost all their personality, they would be in an ambulance straight to the hospital and it would be treated as a medical emergency.

I am glad that the Minister is here today to hear these testimonies, and some that my other colleagues will be sharing, because it is important that we understand the terrible effects of this condition. I do not think it is an exaggeration to say that Down’s syndrome regression disorder is destroying lives.

[Ayoub Khan (Birmingham Perry Barr) (Ind)]

I thank the hon. Member for securing this debate. In Birmingham, we certainly have hundreds—I do not have an exact figure. Does she think that those who are suffering from Down’s syndrome should have a letter written to their GP outlining that there is this other condition—one of regression? This is so that, when and if the worst occurs, at least the general practitioner’s notes, which are now shared across the NHS, would reflect that potential scenario.

[Jen Craft]

I will just say with kindness that people do not suffer from Down’s syndrome—I know it was a turn of phrase—but we tend to say they have it. It is a condition; it is a disability and is part of the make-up of what makes a person a person. I think it is fair to say that people do suffer if they have Down’s syndrome regression disorder, and their families do as well.

The hon. Member touches on a wider point—the real need for education of healthcare professionals and those who come in contact with people with Down’s syndrome to be aware that this regression can occur, in order to spot the early signs, because the earlier they intervene, the better the outcomes. They need to understand that it might not be attributable to late autism or early dementia, but is something in and of itself, and we need to look at how we spread that knowledge more widely.

As I have said, Down’s syndrome regression disorder is destroying the lives of those it impacts, but there is hope for those affected. Trials of treatment in the USA have produced positive results: the use of intravenous immunotherapy was shown to help approximately 20% of individuals who are experiencing regression.

I will not wade into the complex debate about the merits or otherwise of specific types of medication or treatment, but what I am calling for, and asking of the Minister, is a commitment to action. We must work towards the creation of a clear assessment pathway, with uniform diagnostic criteria, to improve the identification and awareness of regression. Health and educational practitioners working in the space of special educational needs and disabilities need guidance to fill the current void in knowledge. Anyone who might come in contact with a young person with Down’s syndrome needs to be aware that regression can occur, whether in mild or more severe forms.

We desperately need to research regression further to understand its causes, investigate the mental health dimension of the condition, interrogate the efficacy of potential treatments and roll out treatments where they are determined to be effective. I look forward to hearing the Minister’s thoughts on how we might work together to achieve that, and I would welcome a determined commitment to meeting those who are already deeply involved in the research, treatment and experience of Down’s syndrome regression disorder.

I thank those who brought the condition to my attention, the Down’s Syndrome Association for its ongoing work in this space, and the Down Syndrome Medical Interest Group. I also thank the clinicians, including Dr Ella Rachamim for her work in this area, and my friends at Upwards with Downs. To the families who have shared such personal accounts of this horrifying condition, I hope that today is a start of a long-overdue and much-needed process of getting recognition of the condition and the treatment pathway that families and people with Down’s syndrome deserve.

[Several hon. Members rose—]

[Sir Jeremy Wright (in the Chair)]

I remind all colleagues that they should continue to stand if they wish to be called.

16:41

[Jim Shannon (Strangford) (DUP)]

It is a real pleasure to serve under your chairship, Sir Jeremy. I thank the hon. Member for Thurrock (Jen Craft) for raising the issue, and for how she participates in all debates—with obvious knowledge, compassion and understanding. We thank her for that. Having this debate enables us to contribute.

I am going to give an example of a constituent in Newtownards who went through Down’s syndrome regression and describe the impact that that is having on mum, dad and child. The condition is not always understood—it is only understood by those it directly affects. Down’s syndrome regression disorder is a condition in which individuals with Down’s syndrome experience a sudden loss of previously acquired skills and abilities. I am going to explain that in relation to the couple in Newtownards and their child—she is a young lady now, to be fair. The condition may involve a change in eating patterns, such as not wanting to eat, and extreme slowness and low energy, which may or may not be associated with weight loss. These are things that their child never had before, but all of a sudden they do. There can be enhanced insomnia, obsessive-compulsive behaviours, a loss of independence in activities or a need for significant assistance with activities. Problematically, the person may also be aggressive, not because they are aggressive, but because their frustration sometimes leads to that. They may display anger or frustration, with or without behavioural outbursts. Those are all things that happened.

When I think about this condition, I think of a family I helped last year with their daughter’s disability living allowance renewal. They are in their late 70s and care for their daughter, who has Down’s syndrome. She walks the floors, night and day, in pain. She is in her 50s, and her joints are reacting to the continued walking. Because she is in pain, she has begun to lash out, not because that is her nature—that was never her nature. Her mum and dad have lovingly cared for her for more than 50 years, but their age and the regression mean that they cannot do so in the way that they did. They find it more difficult.

This week, I had the awful news that the father has been diagnosed with cancer. The question for the family is this: how will they cope without their dad? I helped them with the DLA renewal—I understood the issues and tried to put them across as best I could—but I often wonder why someone has to have a DLA or personal independence payment renewal for Down’s syndrome. It is almost inconceivable to me that it happens. But the question is not just about that. What happens while the dad, nearing 80, is battling cancer? What happens if he passes on from this world? Those are questions not simply for that family in Newtownards, but for families throughout the United Kingdom of Great Britain and Northern Ireland who are ageing and wondering what the next step will be for their adult vulnerable child—an adult in so many ways, but also a child in others.

The underlying need for that family, and for so many others like theirs, is support. They do not know how to handle their child who has stopped responding to them, and feel alone with the changes. As a society, we have rightly moved away from institutionalising Down’s syndrome children. But, with great respect, I believe we have also abdicated our responsibility towards adults with Down’s syndrome and their families—and that needs to change.

In Northern Ireland, the incidence of Down’s syndrome is one in 770 births. That shows the level of support needed for families, and for us back home. My gut feeling is that the numbers are probably the same over here on the mainland. It is not acceptable to throw PIP at a family and walk away. They need respite care for weeks, maybe longer, and day support classes to give their child routine and something to live for.

I am involved with an organisation called East Coast Day Opportunities. It is run by two ladies, Janine Patton and Llewellyn McClurg, in Portavogie in the Ards peninsula where I live. They worked for 20 years at the Tor Bank special school and were touched by the fact that after their education ended at the age of 18, vulnerable adults were left at home all day, so they fought for a form of funding. I know it is not the Minister’s responsibility—it is not about that—but they are still fighting to ensure that individual young people receive their funding. There should be no battle. Dedicated support should be available to enable families to keep their child at home with them. I think in particular of that family in Newtownards who are under such pressure.

In conclusion, support and succour are needed, and that is what we look to the Minister to provide. Regression must not necessarily mean the end of home care. The only way around this is to acknowledge that we have a hard obligation that we must do better in fulfilling.

[Several hon. Members rose—]

[Sir Jeremy Wright (in the Chair)]

Three Back Benchers are seeking to speak. I hope it will assist colleagues if I say that I intend to start calling Front Benchers at about 5.08 pm.

16:47

[Andrew Cooper (Mid Cheshire) (Lab)]

It is a pleasure to serve under your chairmanship, Sir Jeremy. I declare an interest as co-chair of the all-party parliamentary group on Down syndrome, along with the right hon. Member for East Hampshire (Damian Hinds).

I congratulate my hon. Friend the Member for Thurrock (Jen Craft) on securing this important and timely debate on Down syndrome regression disorder—a subject on which she always speaks with authority. I thank her for so eloquently explaining the devastating impact it has on families, the difficulties around its diagnosis, and the need for greater awareness and action.

We have already heard that Down syndrome regression disorder is a heartbreaking condition that affects around 1% to 2% of young people with Down syndrome, typically during adolescence and early adulthood. Despite the profound effects it has on many families across the country, it remains largely in the shadows and is widely under-recognised in our healthcare and support systems.

Down syndrome regression disorder is marked by a sudden and often severe loss of previously acquired skills—language, mobility, self-care and social interaction. Imagine a young person who once spoke fluently, dressed themselves and engaged joyfully with others suddenly becoming mute, withdrawn and dependent. For many families, this is not a nightmare: it is their reality. For them, it is like watching their loved one vanish before their eyes.

The emotional and psychological toll on these families is immense. A recent study published in the Orphanet Journal of Rare Diseases found that the caregivers of individuals with DSRD experience significantly higher levels of depression, financial strain and social isolation compared with the caregivers of individuals with other neurological conditions. Many parents described the experience as traumatic, grieving the loss of the child they once knew while navigating a healthcare system that often lacks answers. That is because in the UK awareness of DSRD is limited.

We have excellent support networks for individuals with Down syndrome, but DSRD falls into a blind spot. There are no standard diagnostic criteria in current NHS guidelines, research funding is scarce, and few clinicians are trained to recognise or treat the disorder. The referral pathways are often unclear, leaving families in limbo during what may be the most frightening period of their lives.

We must recognise that this is not just a medical issue; it is a human one too. One of the greatest challenges with DSRD is the difficulty in diagnosing it. For many parents, their first concern is dismissal by medical professionals. When a young person with Down syndrome begins to show signs of regression, the common response is often that it is simply part of their developmental journey—a phase that will pass. Concerns are too often brushed aside, leaving families feeling unheard and helpless. This dismissive attitude can delay proper diagnosis and treatment, worsening the young person’s condition.

Medical professionals, although experts in their field, may not be aware of this specific disorder and, as a result, may not recognise the signs when they appear. For parents who already face the complexities of raising a young person with Down syndrome, having their worries minimised is an additional burden. Their instinct is to protect and advocate for their child, yet they find themselves in a constant struggle for acknowledgment.

But there is hope, if we act. We need more research in the UK that investigates how this disorder presents in our healthcare and social environments. We must also push for clinical trials in the UK, because similar trials in other countries, particularly the US, have shown that with the right interventions it is possible to help children with this condition to return to their baseline level of functioning.

We need clear diagnostic and treatment pathways to be developed by the NHS and the National Institute for Health and Care Excellence, in collaboration with experts in Down syndrome. Doctors and mental health professionals must be trained to identify the early signs of regression and respond with urgency and compassion.

We must listen to parents. When they voice concerns, we need to take them seriously. They are experts on their children, and dismissing their worries can delay crucial intervention. Families deserve real support, not dismissal. They need practical guidance, better access to care and peer networks that they can turn to during moments of crisis.

The public need to hear more about this condition, because the more we talk about it, the closer we get to funding solutions and saving futures. Every person with Down syndrome deserves the chance to thrive without fear of losing the progress they have made, and every family deserves to be believed, supported and empowered when regression strikes. Let us give Down syndrome regression disorder the attention it desperately needs before more voices are silenced, more smiles fade and more potential is lost.

16:52

[Damian Hinds (East Hampshire) (Con)]

I rise to speak briefly in support of the case put so comprehensively and powerfully by the hon. Member for Thurrock (Jen Craft).

The APPG on Down syndrome, of which the hon. Member for Mid Cheshire (Andrew Cooper) and I are both members, was given a very striking presentation on Down syndrome regression disorder by Dr Ella Rachamim. We were told of the case of a young person with Down syndrome who went from being socially and physically active, able to get dressed, have a shower and enjoy swimming and playing basketball, to becoming stiff and catatonic, losing the ability to balance and walk upstairs, soiling and wetting himself frequently, and refusing food and drink to the extent that he became so dehydrated as to need hospitalisation.

As colleagues have said, Down syndrome regression disorder is a sudden loss of previously acquired and present social, motor and language skills. It is clearly a devastating development for any family, and it is often compounded by a lack of awareness and misdiagnosis. As the hon. Member for Thurrock said, it is taken for autism or early-onset dementia. We are all very grateful to the hon. Lady for securing this important debate, and to the Backbench Business Committee for granting it. I know that she intended to raise awareness of Down syndrome regression disorder in this debate, and she has certainly done so.

Clearly, more research is needed. Dr Rachamim shared with us various treatments, advocated for work-up and treatment plans to be put in place, along with trials and treatment options, and argued that to help this community, increasing professional awareness is key—key to preventing misdiagnosis and to ensuring that patients receive the right care and support. By increasing awareness of Down syndrome regression disorder, more support can be put in place both for the individuals affected and for the parents and carers who are so heavily impacted. This debate is part of that work. Again, I am grateful to the hon. Member for Thurrock, and I hope the Minister will take note.

16:54

[Amanda Martin (Portsmouth North) (Lab)]

It is a pleasure to serve under your chairmanship, Sir Jeremy. I thank my hon. Friend the Member for Thurrock (Jen Craft) for securing the debate, and for her opening words on Down’s syndrome regression disorder.

As we have heard, Down’s syndrome regression disorder is a little known but deeply distressing condition that affects between 1% and 2% of young people with Down’s syndrome, typically between the ages of 10 and 30. It is sudden and life altering. Young people who have developed essential social, motor and communication skills can rapidly lose those abilities, sometimes in a matter of weeks or even days.

One of the greatest challenges facing families is the lack of awareness. It is often misdiagnosed as early-onset Alzheimer’s, late-onset autism or schizophrenia. Without accurate diagnosis, access to the right treatment is often delayed, leaving families to navigate a terrifying and bewildering situation on their own.

I would like to share the story of one of my constituents, whose son Ewan experienced not just one but two severe episodes of this regression. Each time, his descent was sudden. He became consumed by paranoia, withdrew from his life, took to his bed and suffered significant mental health distress. His personality changed dramatically: once a happy, sociable young man, he became fearful and was convinced that Government agents were following him. His family described feeling shocked, heartbroken and completely unprepared. Despite persistent efforts, they struggled to get timely support. They battled to ensure that they were included in care decisions, and had to fight hard for regular reviews from the specialist.

While Ewan has since made a remarkable recovery—I pay tribute to him, and I am proud to say that he has just celebrated one year of work experience, part time at Lidl—and he is now once again his warm, bubbly self, his family’s ordeal has left a permanent impact. They now view his happiness as their priority, recognising his enduring vulnerability.

Research into DSRD remains limited. Though the condition has been recognised since as far back as 1946, there is still no national diagnostic pathway, no agreed treatment protocol and very little professional training. However, 80% of those who receive appropriate and timely treatment show significant improvement. To get there, we need to raise awareness. We must improve diagnostic clarity and ensure that support services are properly resourced and accessible, and that families are listened to, because they know their young people best.

Today, along with colleagues, I am calling for greater clinical awareness of DSRD across health and social care; the development of UK-wide diagnostic and treatment guidelines; and investment in further research to better understand this condition and its triggers. For the families affected, timely intervention can mean the difference between recovery and long-term suffering. I hope that this debate will be a step towards giving young people like Ewan and their families the understanding, support and hope that they deserve.

16:54

[Jess Brown-Fuller (Chichester) (LD)]

I thank the hon. Member for Thurrock (Jen Craft) for securing this important debate, and for her ongoing advocacy on behalf of people with Down’s syndrome and those with special educational needs. The hon. Lady was in the Chamber yesterday when the Secretary of State made her statement about Best Start centres, and her contribution was really valued across the House. Her commitment to raising these issues, both in Westminster Hall and in the main Chamber, does not go unnoticed, and the voices of the individuals and families she raises, who are too often overlooked, are heard loud and clear.

I am grateful to Members from across the House for their contributions to this debate, and for shining a light on the often overlooked but deeply distressing reality of Down’s syndrome regression disorder, which is a little known but profoundly distressing condition that affects individuals when they are at a vulnerable point in their life, often during adolescence or early adulthood. As the hon. Member for Portsmouth North (Amanda Martin) said, it can be sudden and life altering for those with Down’s syndrome and for those who love them. This is not a rare curiosity that can be quietly ignored. It is a heartbreaking and complex condition that strips people of skills, independence and identity, often rapidly and with devastating consequences—and right now, families are being left to navigate it alone.

Regression in this context is the sudden and unexplained loss of previously acquired developmental abilities, including speech, motor skills, self-care and social interaction. It is not autism or dementia—it is entirely different—and it is something that we must understand far better than we currently do. There is currently no single known cause for the regression, which can be triggered by significant life stresses, mental health deterioration, underlying medical issues, infections, nutritional deficiencies, exposure to toxins or, as the hon. Member for Thurrock spoke about, extreme moments of stress. She shared a heartbreaking story about the young person who had a heartbreaking moment in school and did not really recover from it.

Despite its impact, frontline care staff have often never heard of the condition, and when symptoms emerge, diagnosis is often delayed or missed entirely. We need urgent investment in research to better understand the condition and develop evidence-based responses. It is a crisis of unmet need, because 80% of young people can make huge progress if it is caught and supported early enough. Families describe watching their loved ones retreat into silence, lose mobility or withdraw emotionally, often over just weeks or months.

I do not have a child with Down’s syndrome, but I think it is the same for every parent—watching their child change in a way that is indescribable, losing all the things that make them who they are, must be the most distressing thing that they can go through. The impact must be devastating. These families need answers; they need access to specialist assessments, co-ordinated care and, above all, hope that with the right support, their loved one might regain some of what has been lost. Right now, there is no clinical consensus on treatment, no national guidance and very little research funding.

In Chichester, my constituents are very lucky to have an incredible charity, the Chichester and Arun Down Syndrome Support Group, which works tirelessly to fill the gaps left by failings in public service provision. Ahead of this debate, the charity highlighted to me many of the challenges that their young people with Down’s syndrome face, particularly in accessing the support that they need throughout their education. Families have told me that, in hospital, when their Down’s syndrome child was born, they were presented with information from the Down’s syndrome group in Portsmouth, but were unable to access that service because they do not live there. Nationally, there needs to be support for every single child who is born.

The Liberal Democrats are calling for three clear things. First, we would like regression disorder to be embedded in professional training for care workers, supported by new national standards set by a national care agency and a professional framework overseen by a royal college of care workers. The frontline workforce needs to be equipped to recognise and respond to the condition early and effectively. Secondly, we need the Down Syndrome Act to be properly resourced. That means far more than just warm words: it means access to speech and language therapy, occupational therapy, mental health support, physiotherapy and primary care. It means making good on the promise of joined-up, lifelong support, not just at school age but well into adulthood. Thirdly, we need real action on social care. We need bold, cross-party agreement on a long-term settlement now—not in a decade—and we must give unpaid family carers the deal that they deserve, with paid leave, guaranteed respite and long overdue recognition.

Healthcare provision is also lagging. The NHS rightly recommends access to a wide range of specialists for people with Down’s syndrome, from physiotherapists and occupational therapists to speech and language support and mental healthcare, but too often families report waiting lists, postcode lotteries and providers that are simply not equipped to deal with complex needs such as regression. People with Down’s syndrome are often more likely to become seriously unwell from common infections such as flu and pneumonia, yet we are still not doing enough to ensure vaccine uptake. That is why we are calling for everyone with a disability or chronic health condition to have access to a named GP, to ensure early intervention, better diagnosis and ongoing support.

Too many people with Down’s syndrome are being let down by the education system, the care system and the NHS. The regression that some experience in young adulthood is not inevitable; in many cases, it can be managed or even reversed with the right support, but that support needs to be in place for every young person. In my constituency I have seen the strength of local charities such as the Chichester and Arun Down Syndrome Support Group, and organisations such as Together Our Community, but we cannot continue to rely on charitable good will to cover the cracks left by a failing system.

When a young person with Down’s syndrome starts to withdraw, lose speech or motor function or disconnect from their surroundings, their family do not need to be told to wait in a queue. They need a co-ordinated, knowledgeable and compassionate response, and they need it fast, so the question we must answer in this House today is simple: are we content to let families carry the burden alone, or are the Government ready to put in place the policies, funding and professional care that people with Down’s syndrome deserve? What steps will the Government take to drive forward research into Down’s syndrome regression disorder, get stronger training into the hands of those who need it, and guarantee that the joined-up care that people with Down’s syndrome so desperately deserve is finally delivered?

17:05

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

It is a pleasure to serve under your chairmanship, Sir Jeremy. I pay tribute to the hon. Member for Thurrock (Jen Craft) for securing this debate. We thought we were going to have it a few weeks ago, and then things moved around, so I am pleased that she has been able to secure this time slot, because the issue is extremely important. I would not normally speak in Westminster Hall as the shadow Secretary of State, but this is a very important issue on which I know she has spoken powerfully since her election to this House.

This is not only an important debate, but one that has been conducted in a tone that does credit to this House, without party politics. Instead it has focused on those who are genuinely impacted by the topic we are debating. This Chamber so often succeeds in giving a voice to those who might not normally have their voice amplified in political debate, or indeed in the main Chamber, to the extent that it should be. In that sense, this is extremely useful. Although Down’s syndrome has been debated in the broadest sense by this House on numerous occasions, Down’s syndrome regression disorder has been debated rather less so. I recall that in March the hon. Member for Thurrock talked about it in a speech. Today’s debate has helped do something that was among her objectives, which is to raise the profile of this very important issue and draw greater attention to it.

Right hon. and hon. Members have already highlighted the nature of Down’s syndrome regression disorder, how it works, and what happens. It is important to note that, according to research, 1% to 2% of young people with Down’s syndrome between the ages of 10 and 30 can experience it. As the hon. Member for Thurrock and others have highlighted, one of the great challenges, and one of the most impactful parts of this, is the speed with which regression can occur, often without warning, or possibly with warning for those who know what to look for, as she touched on. She spoke very movingly about Fran, giving a real life example of how regression can happen, its impacts, and what can bring it about. It is important to remember, as hon. Members have highlighted, the impact on family when regression disorder occurs.

The hon. Member for Thurrock set out clearly the challenges: the speed with which regression can occur; the lack of knowledge among many, including some in the medical and caring professions, of Down’s syndrome regression disorder; and the challenges around getting a diagnosis and treatment. Like others, I pay tribute to the work of the Down’s Syndrome Association for its campaigning on the broader issues, and specifically on this one, and the helpful briefing and advice that it sent to right hon. and hon. Members.

It is a pleasure to serve opposite the Minister for Care. Although we might occasionally tussle on some things, I know he is a very thoughtful Minister who understands his brief. I therefore look forward to his response; I know it will be considered and measured. I have a few questions for him, which will come as no surprise. First, in 2021, the Down’s Syndrome Association supported research undertaken by the University of Cambridge. I would welcome from the Minister his thinking on how that can be built upon, and what further work can be done around that. Having been a Minister in the Department, I know that it is not always directly within the Minister’s gift to do x and y, because often it will be undertaken by arm’s length bodies or different parts of the system, but I would be grateful if the Minister could set out how the Department can drive forward an increased focus on research.

We have heard about some trials—some treatments—in the US that may offer a positive way forward. To echo the words of the Liberal Democrat spokesperson, the hon. Member for Chichester (Jess Brown-Fuller), I would be grateful if the Minister could set out what more can be done to create clearer diagnostic and treatment pathways for young people with Down’s syndrome regression disorder. I am conscious that, in 2022, Sir Liam Fox secured the passage into law of his Down Syndrome Act, but the guidance on it is still outstanding. Does the Minister have a timeline for when that will be produced, and might that guidance offer an opportunity to wrap in some of the issues around Down’s syndrome regression disorder, to better inform people and raise awareness?

I am conscious that the Minister needs time to reply, and I suspect the hon. Member for Thurrock will want to have a few minutes at the end. I will therefore conclude here. I hope that today’s debate is one of those in this place in which we can see broad agreement across both sides of the House and, in the Minister’s remarks, the potential way forward. As well as debating this and raising awareness, what we all want to see is progress. I very much hope that the Minister will be able to give me succour in that respect.

17:11

[The Minister for Care (Stephen Kinnock)]

It is a pleasure to serve under your chairship, Sir Jeremy. I thank and pay tribute to my hon. Friend the Member for Thurrock (Jen Craft) for securing this important debate. I commend her for the work she is doing to raise such an important issue, and for sharing her personal experiences in a moving and powerful way, as a parent of a child with Down’s syndrome. I also pay tribute to all the hon. Members who have spoken so powerfully and movingly in this debate.

Last week, we launched our 10-year health plan for the NHS, which creates a new model of care, fit for the future. The neighbourhood health service will help to improve life outcomes for disabled people, including people with Down’s syndrome, by providing access to holistic, ongoing support that is closer to home. Through local commissioning, we will ensure that neighbourhood health services work in partnership with family hubs, schools, nurseries and colleges to offer timely support to children, young people and their families, including those with special educational needs and disabilities.

We have heard powerful testimonies about the challenges associated with Down’s syndrome regression disorder, both for people with Down’s syndrome and for their families and carers. As we have heard, regression describes the loss of previously acquired cognitive and developmental skills in an individual. Down’s syndrome regression disorder is a specific, rare type of regression, which usually presents in adolescence or early adulthood.

People with Down’s syndrome can live full lives pursuing their personal interests, taking up employment, and living independently. However, regression can have a devastating impact for people with Down’s syndrome; the loss of developmental skills can affect daily living, language, motor abilities or social interaction. We know that symptoms can often be overlooked, or misdiagnosed as dementia. We have heard that further awareness and understanding of the disorder is needed. Like with other support for people with Down’s syndrome, it is important that care for regression disorder is personalised and takes into account the specific needs of the individual.

As my hon. Friend the Member for Thurrock so clearly explained, there is currently limited understanding of Down’s syndrome regression disorder. We know that experts in the field have looked into regression and developed a position statement on regression in adolescence and early adulthood experienced by people who have Down’s syndrome. This includes recommended healthcare actions for people with Down’s syndrome who show signs of loss of skills or cognitive decline.

There has been some academic research into regression, but there is still much to learn about this disorder and why it happens to some people. We understand that many factors may come into play in causing regression, but the specific underlying cause of Down’s syndrome regression disorder is still unclear. Through its research delivery arm, the National Institute for Health and Care Research, the Department of Health and Social Care welcomes high-quality funding applications from researchers seeking to better understand this condition, and to inform enhanced management and care.

More broadly, patients will receive the most cutting-edge treatment years earlier than planned under the Government’s 10-year health plan, which will speed up clinical trials so that the UK becomes a hotbed of innovation. Millions of people will now be able to search for and sign up to life-changing clinical trials via the NIHR Be Part of Research service on the NHS app, allowing patients to browse and find the trials best suited to their interests and needs.

The Government are committed to improving life outcomes for people with Down’s syndrome, including those who have regression disorder. In order to achieve this, it is vital that we raise awareness of the needs of people with Down’s syndrome. We know that despite many positive developments, such as increased life expectancy, people with Down’s syndrome do not always receive the care and support they need to lead the lives they want to lead in their communities.

[Ayoub Khan]

First, I apologise to the hon. Member for Thurrock for using clumsy language—I meant no discourtesy. We have been discussing PIP and how it could impact many people who require care. Regression can happen very suddenly for people with Down’s syndrome, which is concerning because we are still looking at research and the methods for getting a final determination. Will the Government incorporate something, such as financial care packages and so forth, to deal with the additional care required by those individuals?

[Stephen Kinnock]

As the Government have made clear throughout the debate on reforming the welfare system, those who need to be supported and protected will be supported and protected, so I can reassure the hon. Gentleman on that point. There is clearly a lot of work to do through the review that will be led by the Minister for Social Security and Disability, my right hon. Friend the Member for East Ham (Sir Stephen Timms). This will be an important part of his work.

Through the implementation of the Down Syndrome Act 2022, we will improve awareness and understanding of the needs of people with Down’s syndrome and how to meet them. The Act requires the Secretary of State for Health and Social Care to give guidance to relevant authorities, including local authorities, education and housing services, on the appropriate steps they should be taking to meet the needs of people with Down’s syndrome in exercising their relevant functions.

Work to develop the statutory guidance under the Act is being taken forward as a priority, with a view to issuing it for consultation in the autumn. The shadow Minister, the right hon. Member for Melton and Syston (Edward Argar), asked about that. We looked at publishing it over the summer, but we received feedback from stakeholder groups that parents in particular are often busy with their kids over the summer, so it is better to wait until the autumn. That is what we are doing, and we will be publishing it as soon as the school holidays are over.

Officials have considered a range of evidence and engaged extensively with sector partners to inform the development of the guidance. This includes a national call for evidence, which received more than 1,500 responses. A summary report of its findings will be published ahead of, or alongside, issuing the draft guidance for consultation. Based on what we were told during the call for evidence and our subsequent engagement with sector partners and experts, a needs profile has been developed setting out the different needs of people with Down’s syndrome, including people with Down’s syndrome regression disorder. We intend to publish the needs profile paper alongside the draft guidance this autumn to ensure full transparency.

The guidance itself will raise awareness of the specific needs of people with Down’s syndrome, including health needs such as unexplained regression. The guidance will also set out practical steps that relevant authorities should take to meet the needs of people with Down’s syndrome.

We have made significant progress in developing the guidance. We are working closely with relevant Government Departments and sector partners to ensure that it is helpful, accurate and fully reflective of the latest developments in Government policy. Crucially, that engagement has involved people with lived experience of Down’s syndrome, as well as organisations that support people with Down’s syndrome, other conditions and/or a learning disability.

On 4 June, I met the all-party parliamentary group on Down syndrome and provided an update on the latest progress on the guidance. We discussed how we can ensure that the guidance is as effective and impactful as possible. The latest version of the draft guidance, which has had input from all relevant Government Departments, was also shared with sector partners in June for their feedback.

Officials are reviewing that feedback ahead of issuing the guidance for consultation this autumn, which will provide a further opportunity for individuals and organisations to share their views. We remain committed to delivering high-quality guidance that supports improved outcomes for people with Down’s syndrome, while bringing wider benefit where possible. To support implementation of the guidance, NHS England published statutory guidance on 9 May 2023 requiring that every integrated care board must have a named leader for Down’s syndrome.

The 10-year health plan will ensure a better health service for everyone, regardless of condition or service area. We want disabled people’s access to and experience of healthcare services to be equitable, effective and responsive to their needs. Significant engagement took place as part of the 10-year health plan’s development, and informed the final plan. That engagement included a roundtable on learning disability, at which we heard directly from people with Down’s syndrome about their experience of the NHS. We also received contributions from organisations that support and advocate for Down’s syndrome across the health and social care sector.

The 10-year health plan sets the vision for what good, joined-up care looks like for people with a combination of health and care needs, including people with Down’s syndrome regression disorder or other disabilities. The neighbourhood health service will support disabled people to be more active in the delivery and management of their own care. That includes increasing uptake of personal health budgets, which provide individuals with greater choice and flexibility on how their assessed wellbeing needs are met. We know that there are many disabled people, including people with Down’s syndrome, who want to work. The 10-year plan will break down barriers to opportunity by delivering the holistic support that people need to access and thrive in employment.

A number of hon. Members raised questions about training. The guidance will raise awareness of the specific needs of people with Down’s syndrome, including people with regression disorder. We understand that training is an important part of that picture. Under the Health and Social Care Act 2008 and the Health and Social Care Act 2008 (Regulated Activities) Regulations 2014, providers registered with the Care Quality Commission must ensure that staff receive appropriate professional development necessary for them to carry out their duties. Specific training on learning disability and autism, appropriate to the staff member’s role, is also mandated under the Health and Care Act 2022. We expect that providers should consider whether specific training on Down’s syndrome is required for their staff.

Members also raised questions about funding research into regression disorder. The Department funds health and social care research through the NIHR. The NIHR welcomes funding applications for research into any aspect of human health and care, including Down’s syndrome regression disorder. Such applications are subject to peer review and are judged in open competition, with awards made on the basis of the importance of the topic to patients and to health and care services, value for money, and scientific quality. That enables maximum flexibility, both in the amount of research funding that can be awarded to a particular area, and in the type of research that can be funded.

The NIHR works closely with other Government funders—including UK Research and Innovation, which is funded by the Department for Science, Innovation and Technology and includes the Medical Research Council—to fund research to improve care and prevent poor health outcomes for people with Down’s syndrome.

The shadow Minister asked a couple of specific questions. I think he mentioned Down’s Syndrome Association-supported research by Cambridge University, and the trials in the United States of America. If it is okay, I will write to him on those points. I am not in a position to address them today.

I hope I have addressed the points raised by hon. Members in this debate. I end by thanking all those who have committed so much time and effort to supporting the development of the guidance under the Down Syndrome Act. We are grateful for the invaluable input that individuals and organisations continue to provide on the draft guidance. Their feedback has been, and is, instrumental in helping us to ensure that the final guidance has maximum benefit. Officials will continue to work with sector partners to ensure that the communities they represent are aware of the forthcoming consultation and can share their views.

I once again thank my hon. Friend the Member for Thurrock for securing this important debate, and for all the incredibly important work that she is doing in this area. I also thank all hon. Members for their contributions.

17:26

[Jen Craft]

I thank all colleagues who have taken part in today’s debate. I hope it has been a chance to raise awareness of this much overlooked and under-researched condition. I thank colleagues who shared stories of their individual constituents. My hon. Friend the Member for Portsmouth North (Amanda Martin) shared the story of Ewan, and my hon. Friend the Member for Hertford and Stortford (Josh Dean) shared Jude and Ruth’s moving story.

I also appreciate the contribution of the hon. Member for Strangford (Jim Shannon), who talked about the wider implications for families of caring for someone with Down’s syndrome, as well as the contribution from the hon. Member for Birmingham Perry Barr (Ayoub Khan), who raised the need for more awareness of Down’s syndrome regression disorder.

I thank the Liberal Democrat spokesperson, the hon. Member for Chichester (Jess Brown-Fuller), for her kind words and for talking about the need for co-ordinated care and lifelong support for those with Down’s syndrome. I am also grateful to the right hon. Member for East Hampshire (Damian Hinds) for his contribution. He spoke about the need for more research, and for better support and care for the families of people with Down’s syndrome.

My thanks also go to my hon. Friend the Member for Mid Cheshire (Andrew Cooper) for sharing a passionate plea to listen to parents and families, as we are the real experts. That is something I would like the Minister to embed in the guidance under the Down Syndrome Act—listening to those who are experts in the condition. Fairly often, when a person does not receive timely treatment for things like Down’s syndrome regression disorder, it is because those who know them best are not listened to. They are seen the way they have presented on the day, without their entire history being taken into account.

I also thank the shadow Health Secretary, the right hon. Member for Melton and Syston (Edward Argar), for saying that this is very much a cross-party issue. I hope we can move forward in that spirit and see it as something that is beyond the political sphere. We need to act on it so we can come to a resolution for those who are affected by this horrifying condition.

Finally, I thank the Minister for his comments, and particularly on his commitment to publishing the Down Syndrome Act guidance in the autumn, which I am sure will be welcomed by many. I hope there will be specific measures to raise awareness of Down’s syndrome regression disorder, and a pathway so that parents, carers and those with Down’s syndrome regression disorder can get support. Signposting can often be helpful in showing them where to go.

One thing that comes up time and again, when speaking to parents of children or young people with Down’s syndrome regression disorder, is that they are often unaware of it until it happens. It is helpful to understand that what is happening to their child is not unique, and that it is a recognised condition for which treatment is available. That is one of the more helpful things that the Government can do.

Again, I thank everyone for taking part in this debate, and I hope this is the start of real progress on the issue.

[Sir Jeremy Wright (in the Chair)]

I add my thanks to all who participated.

Question put and agreed to.

Resolved,

That this House has considered Down’s syndrome regression disorder research.

17:29

Sitting adjourned.