Down’s Syndrome Regression Disorder

Debate between Josh Dean and Jen Craft

Tuesday 8th July 2025 Westminster Hall

[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.

Mental Health Bill [ Lords ] (Ninth sitting)

Debate between Josh Dean and Jen Craft

Committee stage
Tuesday 24th June 2025 Public Bill Committees

[Jen Craft (Thurrock) (Lab)]

I beg to move, That the clause be read a Second time.

I will speak briefly to the new clause, which was tabled by my hon. Friend the Member for Sheffield Hallam (Olivia Blake). Its aim is to close a loophole in the current framework by which use of restraint is recorded. Currently, the use of restraint is governed by the Mental Health Units (Use of Force) Act 2018, which mandates that where force or restraint is used in a mental health unit, that must be recorded and reported. There are, however, a number of patients who are treated outside mental health units and therefore do not fall within the scope of the Act. My hon. Friend the Member for Sheffield Hallam has spoken about the issue, to which her attention was particularly drawn in the context of the treatment of patients with eating disorders. This happens quite often, either where there is a shortage of beds in a mental health unit or where the patient in question has co-occurring physical health conditions that require treatment outside such a unit.

Restraint is used regularly and often on patients with eating disorders, by which I mean restraining them to force them to eat, but there is currently no mechanism by which its use must be recorded. If a patient, particularly a young person, who is in hospital but is not in a mental health unit is subject to this restraint, which may be deemed necessary to preserve life and in their best interests, there is currently no mechanism by which that is recorded.

[Josh Dean]

We touched earlier on the safeguards around electroconvulsive therapy. Does my hon. Friend agree that when someone with an eating disorder is restrained, particularly in circumstances that involve the administration of nasogastric tube feeding, such safeguards are really important because of the invasive nature of the treatment and the potential restraint used in delivering it?

[Jen Craft]

My hon. Friend is absolutely right. The crucial purpose of the new clause is to ensure that the use of restraint is recorded at all times, as well as highlighting that quite often the restraint may be carried out not by a member of the medical staff, but by hospital security, for example. I think we can only imagine the real horror and force involved in that.