Down’s Syndrome Regression Disorder Debate
Full Debate: Read Full DebateDepartment: Department of Health and Social Care
Damian Hinds
Main Page: Damian Hinds (Conservative - East Hampshire)Department Debates - View all Damian Hinds's debates with the Department of Health and Social Care
(1 day, 19 hours ago)
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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.