Down’s Syndrome Regression Disorder

Jess Brown-Fuller Excerpts

Tuesday 8th July 2025 Westminster Hall

[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?