Jen Craft MP: speeches

Speeches

• 16 Oct 2025 · Business of the House · Hansard source

  More

  Thameside theatre in Grays is the only public purpose-built theatre in Thurrock. It is a vital cultural asset and has provided the first experience of the performing arts for a number of people, including myself, who trod the boards there for five years as a member of Thurrock’s local scout and guide gang show. My colleagues on Thurrock council are desperately searching for a way to secure the long-term future of the theatre and the wider complex, recognising that once it is gone, it is gone. Will the Leader allow a debate in Government time to talk about how vital cultural assets such as community theatres are and how we can work together to ensure their sustainability?

• 16 Oct 2025 · Health and Social Care Committee · Hansard source

  More

  I very much welcome the report and the leadership that my hon. Friend the Member for Birmingham Erdington (Paulette Hamilton) has shown throughout its production. I have the honour of serving on the Health and Social Care Committee, and this is one of the standout pieces of work that we carried out while she was interim Chair. One of the things that stood out to me as we undertook this investigation was the huge need for cultural change in maternal care, which struck me as very impactful. How can a woman at the most vulnerable point in her life feel safe receiving healthcare from a trust that has been called racist? The need for that cultural change was the key takeaway for me. Does my hon. Friend agree that, on a widespread basis across maternal services in the NHS, this change is desperately needed?

• 14 Oct 2025 · Mental Health Bill [Lords] · Hansard source

  More

  I will not, because I am aware that I am almost out of time. My new clause would ensure that the Government have to set out, within six months of this Bill receiving Royal Assent, a road map that engages in a co-productive way with people with learning disabilities or autism, their advocates and organisations that champion their rights. The road map will design what they need to support them to lead independent dignified lives in the community, and there will be a report every year to say how we are getting community services to a sufficient place so that these much-needed clauses in the Bill can be switched on. This Bill updates mental health legislation and brings it into the 21st century. It is only right that it does so for everyone in our society, including the most vulnerable.

• 14 Oct 2025 · Mental Health Bill [Lords] · Hansard source

  More

  Thank you very much, Madam Deputy Speaker—I will be as brief as possible. I will speak to new clause 37, which stands in my name and which seeks to support the Government in ending the scandal of the inappropriate detention of people with a learning disability and/or autism. I declare an interest as the chair of the all-party parliamentary group on learning disability. Currently, a learning disability or autism, in and of itself, can be grounds for detention under the Mental Health Act. As we all know, this is an absolute scandal—something from a previous age that should be a source of moral shame to everyone in our community. The Bill seeks to address this by removing autism or a learning disability, in and of themselves, as criteria for detention under the Mental Health Act. That offers a lifeline—a light in the tunnel of darkness that a number of people who are detained under the current Act face. However, the impact assessment for the Bill states that the proposed changes to the detention criteria in clauses 3 and 4 “will only be switched on when systems are able to demonstrate sufficient level of community support”. The families and carers of those have a learning disability or autism and who are detained under the Mental Health Act, and the organisations that support them and people who advocate for them, know that too often this vulnerable group of people are pushed to the bottom of a list of competing priorities, and very often slide off it. We know that this Government and the Department of Health and Social Care have a number of competing priorities to deliver on, and the concern for people who fall into this bracket under the legislation is that their concerns just will not be addressed and that this absolute scandal will continue in perpetuity. People who have a learning disability or autism will be detained because our community services just are not up to snuff; we have so categorically failed them that the only thing we can think to do is to lock them away from society.

• 15 Sept 2025 · Children with SEND: Assessments and Support · Hansard source

  More

  It is a pleasure to see you in the Chair, Dr Huq. I am grateful to have the opportunity to speak in this clearly popular debate. As many Members will know, I have the privilege of being mum to two incredible girls, one of whom has additional needs. Like many parents of a disabled child, I feel keenly the unfairness and the challenges that my child will face throughout her life—challenges that are exacerbated throughout her childhood by a system that is far too often adversarial, baffling and unsupportive. Many of my constituents have gone through that experience when trying to access the right support for their children. I carried out a survey and a roundtable, and I will share some comments that drive home what people have experienced. One said: “It’s like living in a world where you feel no one believes your children and their struggles, and all you can do is be on constant fight or flight mode.” Someone else said: “Everything is looked at like a system, like a machine…all the compassion is gone.” Another said: “It’s a constant battle to get help, support and anything our children need.” Someone else said, heartbreakingly, of their son: “In his mind, he will go in, get no help, get in trouble and go home.” The system currently fails our children, but what can be done? There is a lot: truly inclusive schools; a commitment to meeting need wherever it arises; support for teachers and, crucially, school support staff; training for people who deal with our children on a day-to-day basis; early intervention; speech and language support; social, emotional and mental health support; funding for high-needs placements; holistic partnership working between local authorities; education placements; healthcare services; incentives for inclusivity, and sanctions for schools that do not pull their weight on SEND. Above all, we need an acknowledgment that every single child deserves an education.

• 15 Sept 2025 · Children with SEND: Assessments and Support · Hansard source

  More

  Absolutely. It is crucial that those with experience of the system are heard. The only way we can fix it is by taking the approach of those who have experienced it. My interest in my child does not stop at the school gates; it is holistic, looking forward to her life as she goes through childhood into young adulthood and adulthood. This is a matter of social justice, fairness, equality and equity. Like many parents of a disabled child, I am tired, I am constantly anxious and I am constantly ready to go into battle for my child, but what I am not, and what my beautiful child is not, is a burden. We did not cause this crisis, but we want to fix it. We want to work with the Government to make things better for our children. I do not want a single other parent to have to fight for the very basic rights of their child—for what parents of non-disabled children do not have to fight for. The Disabled Children’s Partnership was in Parliament today talking to MPs about its “Fight for Ordinary”. So far, our rights have been hard fought for and hard won. We hope that the next generation of children and families will have a much easier time.

• 22 Jul 2025 · Changing Places Toilets · Hansard source

  More

  I want to add a personal note of thanks to my hon. Friend for being such an outstanding advocate for families such as ours. We share a strong union on that point. Does he agree that it is not enough just to have a Changing Places facility, because it is also important for staff in those areas to have had training so that they know how to direct people to it? I reflected on that the other weekend when we went to a splash park, having seen that it has a Changing Places facility, which was amazing. However, when we asked the person opening the café, who allowed us to go in, how we could access the Changing Places facility, they just did not know, which made it inaccessible. Does he agree that it is so important that training is given to staff where there is a Changing Places facility, so that they can adequately direct people to it?

• 22 Jul 2025 · Changing Places Toilets · Hansard source

  More

  I very much appreciate my hon. Friend giving way again. Does he agree that when you go somewhere and you are unable to access adequate facilities to change your child, the message that is sent to you and your family is, “You are not welcome here. We do not want you.”? Conversely, when you go somewhere that has a Changing Places facility, you feel welcomed and part of the community.

• 22 Jul 2025 · Changing Places Toilets · Hansard source

  More

  Will my hon. Friend give way?

• 22 Jul 2025 · Topical Questions · Hansard source

  More

  Last Friday I brought together GPs, housing developers, the local authority, the ICB, and anyone else you care to name, to try finally to solve the issue of our having one of the most under-doctored areas in the country for primary care. Among the many issues raised was a particularly niche one: thanks to NHS Property Services demanding a late payment from a couple of GP surgeries, which were unaware that they were due to pay this rent, those surgeries now face the possibility of having to pay a bill that equates to the cost of one GP’s salary for a year. That cannot be right.

• 21 Jul 2025 · SEND: Education, Health and Care Plans · Hansard source

  More

  On Friday I had the privilege of spending a good few hours with SEND parents in my constituency, talking about what does not work under the current system and what we would like to see changed. There was a lot of frustration and a lot of tears. They were honest and open about their upset at the current system, but there were also a lot of ideas and a determination to make change happen, so that those who come after us do not have to go through the same stress and anxiety that we do as SEND parents. Will the Secretary of State guarantee that the voices of parents, carers and families will be integral to forming the schools White Paper that is due out in the autumn?

• 8 Jul 2025 · Down’s Syndrome Regression Disorder · Hansard source

  More

  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.

• 8 Jul 2025 · Down’s Syndrome Regression Disorder · Hansard source

  More

  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.

• 8 Jul 2025 · Down’s Syndrome Regression Disorder · Hansard source

  More

  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.

• 8 Jul 2025 · Down’s Syndrome Regression Disorder · Hansard source

  More

  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.

• 7 Jul 2025 · Giving Every Child the Best Start in Life · Hansard source

  More

  Frankly, I am shocked that Opposition Members seem to be suffering from collective amnesia when it comes to figuring out how we got into this state in the first place. As a SEND parent, when I was struggling over the past seven years I would have welcomed some of the concern they are showing today for those who have children with SEND in early years. Parents are anxious and worried. That has not risen from a void, but anxious and worried they are. What reassurance and commitment can the Secretary of State give that parents and families of children with SEND will be listened to and their voices heard in any changes to the SEND system in the forthcoming White Paper? Change is desperately needed, but parents, families and children must be at the heart of that.