Jen Craft
MP for Thurrock · Labour · United Kingdom
“On a visit to Basildon hospital last week, I was told by staff how dealing with the unprecedented demand due to the heatwave was compounded by working in a building that is fundamentally unfit to cope with extreme heat, not least with A&E working above capacity, with absolutely no windows.”
“My local hospital, Basildon university hospital, is in the 40th worst trust for delivering hospital care. Does my hon. Friend agree that not having the right community equipment, such as community disability aids and home adaptations, can quite often be a leading cause of delayed discharge?”
“Many colleagues have spoken about the importance of sports, activity and physical health, and how it is not just a nice to have or an add-on, but something that is absolutely vital if we are to deliver our goals, particularly on creating a healthier ageing population and a healthier population in general.”
“I very much welcome the report and Baroness Amos’s work to highlight the failings across our maternity system. It is pure and utter medical misogyny that has led us here. The value that we place on the lives and experiences of women has been brought to the fore, and it is very, very low.”
“If someone’s kid decides that they are going to start legging it towards the massive ring road that goes around the side of the rugby field, we are all running after them. No one is left out, and parents do not need to arrange 5 billion different support workers just so that their kid can take part.”
“In my constituency there are some fantastic groups that look to address that shortfall, such as JTD Arts and the excellent Ace network. Disability sport for young people is very important, and I believe that we should try to address the lack of accessibility on a national level.”
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“I would like to pay tribute to my constituent Henry Nowak, who sadly lost his life in an incident a few days ago. He was 18 years old, had just started university and had his whole life ahead of him. My thoughts, and I am sure those of the whole House, are with his family and those who loved him. May I ask the Leader of the House what the Government are doing to support victims of knife crime, and whether he will find time for a debate on this important matter?”
“My mum, a former shop steward, always drummed it into me that there are no winners in a strike. Never is that as stark as in the situation we are facing now. There will be healthcare workers in my constituency, already under tremendous pressure, who will be looking at the situation coming up in the next few weeks with dread. That includes resident doctors who will be looking at that uncertainty and wanting some surety as to where they should go. The Secretary of State has been incredibly reasonable and has set out a plan that I plead the leadership of the BMA to get on board with. Call off these strikes to get us through winter and through this difficult period for the benefit of patients and for the whole NHS. Will the Secretary of State join me in echoing that plea?”
“They remind us that welfare standards slip when no one is watching, particularly aboard deep-sea vessels. Many workers live in cramped conditions, performing physical roles with limited opportunities for rest. When crews are small, long shifts mean that sleep deprivation and chronic fatigue are common. This can be incredibly dangerous, especially when staff are handling complex machinery. It also drives poor mental health among crews. Loneliness and isolation are common, as they are separated from their families for often months at a time.”
“Some 95% of this country’s goods and services arrive by sea, with Thurrock’s ports receiving more than 65 million tonnes of cargo a year to quite literally keep our country moving. It is easy to forget the people at the heart of the industry: the seafarers who staff the ships to bring goods to our shores. Their impact in Thurrock and the country as a whole is profound. More than 160,000 seafarers work in the UK shipping industry. Without them, and international seafarers, our supermarket shelves would be empty within seven days. As we enter the run-up to Christmas, the busiest time of the year for the shipping industry, many of us will be opening presents brought here on ships. Yet the workforce are often overlooked. Seafarer charities call this phenomenon sea blindness—out of sight, out of mind.”
“I beg to move, That this House has considered seafarers’ welfare. It is a pleasure to serve under your chairship, Sir Christopher. The UK is an island nation. Our history and economy have been defined by maritime trade. That is certainly true in my constituency of Thurrock. Part of our local identity is shaped by our position as a key port in the Thames estuary—from the instrumental role Thurrock played in the D-day preparations to the arrival of the Empire Windrush at Tilbury to help to rebuild the nation in the post-war period. The shipping industry has driven economic growth. The port of Tilbury in my constituency, and the nearby London Gateway, act as key links in the supply chain that keeps our country moving, bringing significant investment and economic opportunity into the region.”
“It would make a huge difference and give the organisations that work tirelessly to support them financial security into the future. The Government are making historic progress on seafarers’ welfare, but it is vital that we continue to build on that momentum in ports and at sea. I look forward to the implementation of the mandatory seafarers’ charter and the Employment Rights Bill, which will deliver significant change, but we can go further in supporting the seafaring community, whose needs are often overlooked. The Government have a key role to play, working with ports, shipping companies, trade unions and international partners to drive better employment standards and improve welfare support. We must all remember what seafarers do for our country: their contribution is invaluable and cannot be overlooked.”
“However, in ports where intervention is more limited, ships that often pay £100,000 or more in fees will regularly refuse to make a £25 donation. Currently, the total income generated from levies represents only 3% to 4% of the funds that UK charities require. I urge the Government to look into the idea and to work with ports and shipping companies to explore how to scale up schemes across the country. Several other countries, including France, Germany and New Zealand, already have successful models in place. I encourage Members with significant ports in their constituencies to contact the local port authority to ask whether they would consider implementing an opt-out levy. For many vehicles, £50 represents less than 0.03% of docking costs. A levy would create a reliable, long-term funding stream for seafarers’ welfare.”
“There are long-term solutions that could be explored. A small opt-out levy charged to vessels entering UK ports could be a game changer. Just £50 per visit would make a significant difference. To put it in perspective, the cost of bringing a large ship into port often exceeds £100,000, so a small £50 donation would represent only a fraction of that cost. Throughout the country, 25 ports have already implemented similar schemes, with varying levels of success. Levies have been most effective where port owners communicate with shipping companies, emphasising the importance of independent welfare support. Humber port, for example, raised over £72,000 last year by being proactive with its levy system.”
“Facilities like the Queen Victoria Seafarers Rest in my patch exist at only about 40% of all UK ports. Where services are available, many face financial uncertainty. Meeting their running costs can be a challenge, with most sites needing £170 a day to keep the doors open. Their funding comes from a variety of sources: funds from the Government, donations from shipping companies or port authorities, and fundraising efforts by the centres themselves. Some welfare centres have strong partnerships with the local port, but that is not the case across the board. In practice, voluntary organisations bear most of the financial burden for welfare support, relying on fundraising efforts to fill the financial shortfall and subsidise the costs that should fall to shipping companies to care for their own workforce.”
“Importantly, they all receive a handwritten card thanking them for their efforts, on behalf of the people who are on the receiving end of all their hard work. For many people, this is the only Christmas present they will get. While I was at the Seafarers Rest, one of the volunteers shared the story of a sea captain who came to visit. He was 17 the first time he went to sea, and he spent Christmas away from home. He was Norwegian, and he went to a similar set-up—not in this country but abroad—and was given a Christmas present. He still remembers it and still has the woolly hat that someone, somewhere knitted for him. He said it meant the world and lifted his spirits. So the efforts the volunteers put in do not go unnoticed, and we should all be grateful for what they do. Unfortunately, such support is not in place across the country.”
“I offer my thanks for their tireless efforts, and for the tireless work of their volunteers—especially those who serve in my constituency at the Queen Victoria Seafarers Rest in Tilbury. I am incredibly impressed by their support for seafarers who come into port. They offer a brilliant service, including port transport, free wi-fi and fresh food. They also run a bar, host social events and assist with safeguarding concerns when necessary. The latest Seafarers Rest project, wrapping 3,000 Christmas presents for seafarers, is well under way. I was pleased to lend a hand last month. Every seafarer receives either a hat, scarf or pair of mittens; SIM cards so that they can contact their family; a little bit extra and a chocolate bar.”
“The issue has grown increasingly severe, and 2024 was the worst year on record, with more than 2,000 seafarers left to fend for themselves. Many have family at home who rely on their income. When a ship is abandoned, whole communities suffer. The issue is more common abroad, but the UK has been affected on several occasions. Even when vessels are not abandoned, seafarers may find themselves stuck for weeks following ship arrests. This has happened several times in my constituency, with a notable incident at Purfleet-on-Thames last year that also highlighted why port-side support services are so important. Several charities do excellent work in this space, including the Queen Victoria Seafarers Rest and the Merchant Navy Welfare Board.”
“It is encouraging to see our Government working to combat the issues, teaming up with signatories to the international maritime convention to drive up standards together. Tackling abuse and malpractice in the seafarer sector will, however, require a co-ordinated international approach. I would welcome any update from the Minister on engagement with our international partners to that effect. Next year, new amendments to the international maritime convention come into force, including measures to strengthen repatriation rights. They will be critical for seafarers. Across the world, ship owners who face legal disputes or financial challenges are abandoning vessels in ports. Crew are left without pay, food or access to vital medical equipment.”
“The Employment Rights Bill is a critical step, paving the way for a legally binding seafarers’ charter that will help to root out poor practice in the industry. It aims to limit maximum periods of work at sea, improve safety training and strengthen laws around mandatory rest. Importantly, the Bill also combats unacceptable fire-and-rehire cycles. Trade unions such as the RMT have shone a light on these issues and stood up for British workers when they have been at the sharp end of the practice in the past. The challenge now is to ensure that our interventions make a real difference for workers. If international partners are able to sidestep their obligations, UK nationals will lose out. We must not allow a situation in which the welfare and pay protections afforded to British seafarers put them at a competitive disadvantage.”
“I thank my hon. Friend for her intervention. I will come on to talk at length about the charitable contribution made by organisations such as the Queen Victoria Seafarers Rest. I am familiar with its work in her constituency and in mine. I do not think we can overstate the contribution that organisation makes to the welfare of seafarers, and to maintaining the shipping industry as a whole. Mental health among crews is at a low and, tragically, suicide rates are higher among seafarers than among the wider population. We must do a much better job of supporting seafarers and ensure that they receive the same support as our domestic workforce. The Government have a key role to play in that.”
“The Minister also updated us on some of the work he has been doing internationally, particularly in looking at reducing the pay differential between UK-based seafarers and others. I look forward to working with him and colleagues to make sure that those who make their living on the sea, to whom we all owe a debt of gratitude, receive proper remuneration and thanks from the nation. Question put and agreed to. Resolved , That this House has considered seafarers’ welfare.”
“For example, sexual assault against female seafarers is on the increase, but women often fail to find the justice they need. Perhaps that is something we can pursue. I thank my neighbouring MP, my hon. Friend the Member for Gravesham (Dr Sullivan)—we are separated by only a body of water—for raising the work of the RNLI. I am incredibly grateful for the work that it does saving lives at sea. Without its vital voluntary contribution, I am sure the lives of many more who make their living at sea would have been lost. I welcome what the Minister said about looking at how we can promote the levy system and take it further. That is one thing that would make a real difference to onshore welfare provision for seafarers.”
“I thank everyone who has taken part in the debate. The 3 pm shift on a Thursday is not a great one, especially when we are low on numbers, so I am grateful to Members for being here. I offer my thanks to all those who go to sea. The hon. Member for Dumfries and Galloway (John Cooper) spoke eloquently about the call of the sea, but also its inherent dangers. My right hon. Friend the Member for Hayes and Harlington (John McDonnell) highlighted a specific example. The loss of James Elliott brings home the real dangers for those who make their living at sea and the debt of gratitude that we all owe them. My right hon. Friend also spoke about flags of convenience, which is a real problem and an issue when it comes to investigating crimes at sea.”
“In the case before us, it is a chain of nurseries and in the case I am referring to it is a multi-academy trust. It raises questions as to whether the body can be trusted with safeguarding more widely. Are there plans in place to look at corporate responsibility and to look at these things across the piece, rather than just as individual isolated incidents? Another parallel is that I understand a whistleblower brought this case to the attention of the police in the first place. What measures will be introduced to protect whistleblowers in such cases, particularly when the person and the organisation to whom the whistleblower is reporting may be compromised?”
“All our thoughts are with the families of the children affected by this appalling case. We cannot even begin to understand the impact it will have on those children throughout their lives. A whole load of support will need to be brought in to protect them and deal with the knock-on effects that they experience. It brings to mind a case that has been brought to my attention involving another group of extremely vulnerable individuals. These are older children with complex and severe learning disabilities. I cannot talk too much about it, because it is a live case, but a parallel that struck me was that serious safeguarding concerns have been identified and given weight in one setting, when the organisation is part of a larger chain.”
“Since becoming a Member of Parliament, I have heard far too often from my own constituents that when they have approached the police, particularly with complaints about coercive control, they have felt dismissed, not listened to and not taken seriously. Will the upcoming violence against women and girls strategy look at the root cause of violence against women and girls, which is rampant misogyny in our institutions and society?”
“I would also like to extend my sympathies to the family of Sarah Everard. Like many people, I found that my trust in the police service was fundamentally shaken by the events that led up to Sarah Everard’s murder. That was reinforced later when I saw how badly the vigil was handled—or mishandled—by the Metropolitan police and how women who had gathered to grieve and show their solidarity and support for Sarah Everard’s family were treated compared with how a football celebration, predominantly attended by men, was policed. It filled me with rage, shook my trust and made me question who the police are operating for and whether they take seriously the concerns of women, particularly of women who face violence and sexual abuse.”
“The right hon. Gentleman is talking about two completely opposite ends. He says his party wants to invest in and find a way forward on social care, but he is opposing something minimal that will raise the living standards of those who work in the industry. Which one is it: does he want to invest in social care or not?”
“I thank my hon. Friend for giving way and for mentioning our campaign. As she said, we both care very much about the return of the Gravesend-Tilbury ferry, which is a vital part of local public transport infrastructure. Our plea is for a very small proportion of the projected toll of the lower Thames crossing to be used to pay for the return of the ferry in perpetuity.”
“Q12. Last week, the covid inquiry reported that 23,000 deaths occurred in England in the first wave of the pandemic that could have been prevented due to the UK response being too little, too late. Those were not just 23,000 deaths; they were 23,000 people who had family and friends who loved them, and valuable lives that were cut short due to an abysmal failure of leadership by Boris Johnson and his Government. Those people were categorically failed by a Prime Minister who prevaricated, delayed and prioritised political expediency over making the tough decisions that could have averted tragedy. If the Prime Minister were to lead us through the next pandemic, would he value saving lives above all else?”
“Last week I had the honour of joining the Commonwealth War Graves Commission and Jan and Len—AKA Team Pritchard—in West Thurrock cemetery in my patch to learn more about their work. Thurrock has 82 Commonwealth war graves, and Jan and Len have volunteered to take care of them and make sure that all the names are visible so that the sacrifice of those men and women is properly remembered. As we come to the month of remembrance, will the Leader of the House join me in thanking volunteers like Jan and Len for all that they do to make sure that those who sacrificed so much for our country are properly acknowledged and that tributes are paid in the most appropriate way?”
“I strongly welcome this strategy today, particularly the commitment that the Prime Minister and the Secretary of State have made to guarantee all 16-year-olds a college place. However, will she commit to working towards closing the legislative gap, where children between the ages of five and 16 with SEND can access home-to-school transport, as can those with SEND from age 19 to 25, but between the ages of 16 and 19 there is currently no statutory provision for them to have home-to-school transport. An estimated one in seven disabled young people, equating to 13,500 people, were unable to access college this year alone as a result.”
“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?”
“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?”
“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.”
“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.”
“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.”
“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.”
“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.”
“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?”
“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.”
“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.”
“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.”
“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.”
“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?”
“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.”
“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?”
“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.”
“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.”
“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.”
“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.”
“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.”
“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.”
“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.”
“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.”