Jen Craft

IN THEIR OWN WORDS

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539 held · 519 searchable for Jen Craft. The searchable lines are below in date order, each linked to its source. Free to read, in full, without an account. Page 5 of 10.

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1. “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.”

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2. “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.”

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3. “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.”

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4. “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.”

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5. “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.”

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6. “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?”

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7. “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.”

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8. “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.”

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9. “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.”

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10. “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.”

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11. “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?”

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12. “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.”

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13. “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?”

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14. “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.”

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15. “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.”

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16. “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.”

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17. “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.”

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18. “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.”

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19. “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.”

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20. “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.”

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21. “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.”

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22. “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.”

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23. “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.”

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24. “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.”

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25. “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.”

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26. “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.”

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27. “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.”

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28. “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.”

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29. “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.”

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30. “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.”

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31. “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.”

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32. “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.”

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33. “10. What assessment the Church Commissioners have made of the potential impact of the £25,000 cap in the listed places of worship grant scheme on levels of church repairs.”

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34. “The changes to the grant scheme, and the uncertainty over its future, present significant challenges for historic churches in need of maintenance, as my hon. Friend has just set out so well. These include the grade I listed St Nicholas church in Ockendon, in my constituency of Thurrock, which, as the warden told me this week, carries a significant burden in repair work due to its age. Can my hon. Friend assist me to understand what support is available for parishes facing these challenges to ensure that they continue to thrive at the heart of communities, as they have done through hundreds of years of history? I will be lobbying DCMS as well.”

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35. “Will the Leader of the House allow for a debate in Government time on how we tackle the blight of derelict buildings in our town centres?”

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36. “A couple of weeks ago, I held a meeting in my constituency with the new owner of the State cinema in Grays town centre. This is a wonderful art deco building that has been closed for the best part of my life. I have never, unfortunately, set foot in it, despite turning 40 a couple of weeks ago and despite being born, bred and living in that place my whole life. There is hope, finally, for the State cinema that it might once again be somewhere that people in the town centre can view with pride and visit, bringing their children and grandchildren. However, there are a number of other derelict buildings in my constituency: the Jack O’Lantern pub in Ockendon, the Calcutta Club in Tilbury, the Bricklayers Arms in Grays—I could go on.”

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37. “Thank you, Mr Deputy Speaker. The heart, soul and lifeblood of our NHS are the people who work in it. I doubt there is anyone in this House who does not owe a personal debt of gratitude to a health care worker. Can the Secretary of State reassure me that the fingerprints of NHS workers are all over this 10-year plan, and that it has been designed and produced with all their valuable inputs?”

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38. “It would alleviate that congestion—the congestion that will still exist after about five years of the lower Thames crossing’s operation. In the meantime, the Government should look at other ways to support the return of this absolutely vital, crucial service for my constituents and those of my hon. Friend.”

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39. “Someone said, “We don’t have lots of nice things in our part of the world—the things that we do have, we want to keep, and the things that we did have, we want back.” It was absolutely delightful. Coincidentally, the Tilbury ferry is exactly the right amount of time that any child can spend on a boat before going mad and getting bored: five minutes. They see the boat, get on the boat, and are excited; then they want to leave the boat, but by then the boat is at Gravesend—brilliant. It is a fantastic day out. My plea to the Minister is to consider what my hon. Friend the Member for Gravesham has said, particularly in relation to using some of the money that will be generated by the lower Thames crossing; a minuscule proportion could fund the running of this service in perpetuity.”

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40. “Within about a week of starting a petition to try to bring back the Tilbury ferry, I had received 500 signatures; it now stands at a little over a thousand. We asked people to share their memories and share why they want to bring the ferry back. If we are looking at someone coming on board—a potential private partner—we want to show that there is an appetite for the ferry and that it will be used, because it was always used. There was never an empty ferry when it was running; it was always busy throughout the day, any day of the week that it was running. People have shared things like wanting to go on the ferry one more time before they die—things that are really quite moving. They have shared memories of taking their grandchildren and great-grandchildren on it and going on day trips out, as well as travelling for work.”

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41. “We share a lot of health services, so people would take the ferry over the river for that; I used to see my orthodontist in Gravesend when I was a teenager, which was something I looked forward to less than day trips out and visiting the cafés, shall we say. However, it was important. Some of my constituents commute over to go to the grammar schools in Kent. We also have quite a lot of people who take the river to travel to work; I understand that the Port of London actually puts on a small boat for their staff who live either side of the river. Indeed, my brother lived for a time over the river, just a short hop on the ferry away—again, that is no longer possible. It is really quite upsetting and sad for a lot of us.”

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42. “Clearly, that needs to be addressed. My hon. Friend spoke eloquently about why we do not feel that the lower Thames crossing is necessarily the way to answer the problem of congestion, but I would like to add my voice to say that the Tilbury ferry provided a public transport alternative to using the roads. That is the direction of travel we should be looking at: making public transport open, accessible and easier to use. When the Minister rises, he may say that the Government are not in the habit of funding boat and river services. My answer would be that we should perhaps explore the art of the possible, and look at what it is possible to do and how we can restore this service. The ferry was not only something wonderful, cultural and historic; it was actually a key part of public transport infrastructure in my part of the world.”

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43. “Friend’s side of the river going to the cafes and there is a lovely shop that sells boardgames—in case hon. Members cannot tell, I have a penchant for geekery and boardgames are very much up my alley. There is a lovely pub called the Three Daws, where I have spent many a happy time. Sadly, we are no longer able to visit, because it would mean a 45-minute to an hour trip over the Dartford crossing and around. Indeed, there is congestion daily on the Dartford crossing. When there are more severe issues, as there are today—my husband rang me to say he had to get my daughter from school as her bus cannot pick her up due to traffic backing up right into my constituency—it is a huge issue for us. Many of my constituents will tonight be sat about 10 minutes from their house, unable to get there because of the issues with congestion.”

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44. “I thank my hon. Friend the Member for Gravesham (Dr Sullivan) for securing this debate. We call each other our sisters across the river, as we are separated by a small stretch of the River Thames. I want to very briefly add my contribution on the importance of the Tilbury ferry, as we call it on my side of the river. My hon. Friend has spoken at length about the history of the Tilbury ferry, and it does have a long and proud history. We always refer to it as having been granted to us by Henry VIII. It ran continuously for the best part of 500 years until bankruptcy by a Tory council in Thurrock took it out. I am really determined to see its return. The ferry is personal and special for me. I have many childhood memories of taking the Tilbury ferry across the river to Gravesend to spend a delightful day on my hon.”

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45. “On that specific point, my hon. Friend and I have asked in the past whether it would be possible to use some of the bus funding, which has received an uplift, to fund the Tilbury ferry. The answer has been that it would not be possible, because it is not a bus—it is fairly obvious that it is not a bus. Will the Minister perhaps consider reclassifying the Tilbury ferry as a river bus?”

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46. “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.”

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47. “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.”

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48. “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.”

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49. “We acknowledge that such involvement has a massive impact on the patient’s ability to heal, get better, recover from their mental illness and, in some cases, get well enough to go home. It is vital, if people are subject to restraint and the use of force, that it is recorded in an appropriate manner. This new clause seeks to mandate the recording of its use by staff, as well as information such as the member of staff who applied the force, whether they are medical, and, vitally, demographic data. My hon. Friend the Member for Southend East and Leigh—I hope I have that right—”

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50. “I completely agree. The long-term implications and impacts of restraint on health and wellbeing have been widely documented and acknowledged. It is vital, if a patient is subjected to these measures, that their use is recorded and the patient, in turn, can understand why. The Committee has spent significant time talking about the importance of patient inclusion in their treatment plans. Earlier clauses, which I will not revisit at length, deal with the importance of enabling patients to select how and where they are treated, as well as advance choice documents. They are vital to the patient experience, because they involve and include them in how they are treated.”

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