Contribution
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.