Oral Answers to Questions

Josh Dean Excerpts

Tuesday 22nd July 2025 Commons Chamber

[Ashley Dalton]

We are already delivering. The hon. Lady is absolutely right to identify that a number of plans are being brought forward. We take this matter very seriously, and we want to ensure that we get it right. We plan: we plan so that we perform effectively, and we plan for success. The national cancer plan will be coming later this year, and I am sure that we will be able to outline a timetable for all other plans. I assure her that planning is not doing nothing; planning is making sure that we get this right and that we deliver.

[Josh Dean (Hertford and Stortford) (Lab)]

9. What steps he is taking to increase metachromatic leukodystrophy screening provision for infants.

[The Parliamentary Under-Secretary of State for Health and Social Care (Ashley Dalton)]

I thank my hon. Friend for raising this issue and congratulate his constituent David Kiddie on the 190-mile walk he completed earlier this year to raise awareness and funds for those with MLD and their families. The Government are committed to listening to those with MLD and their families and acting with compassion and care to support them. The UK National Screening Committee, which advises the Government on all screening matters, is consulting on the outcomes of an evidence review looking at whether to screen for MLD.

[Josh Dean]

In 2024, two-year-old Lily Stock was diagnosed with metachromatic leukodystrophy, a rare and progressive disease that will, in her family’s words, “slowly take Lily away”. Libmeldy, a lifesaving gene therapy, is available through the NHS, but I understand that it must be administered before symptoms develop. Sadly, that means it is too late for Lily to benefit from the treatment. Emily and Sean, Lily’s parents, are campaigning for MLD screening to be added to the heel-prick test on newborns, so that MLD can be identified early and treated effectively and no family will have to go through this devastating experience. Will the Minister and her officials look into adding MLD screening to the heel-prick test, and will she and the Secretary of State join me to meet Lily’s family and hear their story at first hand?

[Ashley Dalton]

I thank my hon. Friend for raising this matter. Lily’s story really lays bare the heartbreak that rare diseases can bring and the vital role that early diagnosis can play. I am happy to meet my hon. Friend and Lily’s family. May I suggest that we meet when the UK National Screening Committee has completed its review, so that the Government have received advice on this important matter? We can then discuss that advice together.

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[Wes Streeting]

I can certainly give the right hon. Gentleman the assurance that we are looking right across NHS estates to make sure we are making best use of them, particularly in the context of neighbourhood health. I have heard the case he has made about how neighbourhood health services could be provided on that site. I hope commissioners have heard the case, but if not I will make sure that they do and that he gets the relevant meetings he needs.

[Josh Dean (Hertford and Stortford) (Lab)]

T4. My ADHD—attention deficit hyperactivity disorder—diagnosis in May this year helped to answer questions about my life and to put support in place to improve it, but we know that over 300,000 children are waiting for an assessment and that untreated ADHD affects educational attainment, employment prospects and health outcomes. Will the Secretary of State set out the Department’s plans to improve access to assessments and treatment for ADHD? Will he work across Government to develop a long-term, joined-up approach to ADHD care?

[The Minister for Care (Stephen Kinnock)]

I commend my hon. Friend for bringing his personal experience to bear on this important matter. NHS England’s independent ADHD taskforce is looking at how to provide support for people with ADHD and how to improve it. We are considering the taskforce’s interim report and look forward to the final report later this year. The taskforce is joined up with expert groups established across Government to provide advice on meeting the needs of neurodivergent children and young people in education, and on boosting neurodiversity inclusion at work.

Down’s Syndrome Regression Disorder

Josh Dean Excerpts

Tuesday 8th July 2025 Westminster Hall

[Jen Craft (Thurrock) (Lab)]

I beg to move,

That this House has considered Down’s syndrome regression disorder research.

I am honoured to serve under your chairship, Sir Jeremy.

Down’s syndrome regression in a mild form is not uncommon among people with Down’s syndrome. It represents the loss of previously acquired developmental skills, which can include a slight decline in the ability to speak, reduced interest in social activity, or increased dependency on caregivers. With the right care or behavioural support, people experiencing mild regression often make a complete recovery, and yet in a small proportion of people with Down’s syndrome, there is a much more dramatic and devastating loss of skills.

The regression such people experience is profound and the onset stark. Typically, it occurs in young adults, who almost overnight can retreat into themselves and become uncommunicative, catatonic and uninterested. As more medical professionals have encountered that aspect of Down’s syndrome in the past 20 years, it has become known as Down’s syndrome regression disorder.

[Josh Dean (Hertford and Stortford) (Lab)]

I am grateful to my hon. Friend for securing this important debate. My constituent Ruth’s son has DSRD, which has impacted his mobility, and means that he is prone to outbursts and is struggling to access education. It took a long time for Jude to be diagnosed. In the UK, I understand, no diagnostic or treatment plan is in place. Does my hon. Friend agree that research into the area is critical and that, were a neurotypical person to present with such regression, it would be treated as the medical emergency that it is?

[Jen Craft]

Without wishing to get ahead of myself in my speech, I very much agree with my hon. Friend. I also add my thanks to Ruth for sharing her and Jude’s story. It had a significant impact on me when I heard it.

As I was saying, the condition is truly horrific, and it has been largely under-researched and overlooked. Existing studies of Down’s syndrome regression disorder are few and far between. A study in 2021, “A systematic review” by Walpert, Zaman and Holland, examined the existing body of work. It identified that cases of extreme regression have often been wrongly dismissed as a late diagnosis of autism or early-onset dementia, but the nature of those conditions and the age at which they present are categorically distinct from regression disorder. Symptoms of autism present in early childhood, while dementia typically causes a gradual loss of skills from the age of 40 upwards. Neither of those condition profiles matches the dramatic loss of developmental skills in young adulthood caused by Down’s syndrome regression disorder.

While no single cause has been identified, a clear trend is that significant life events can closely precede the onset of regression disorder. The 2021 review found that the most common example was a change in environment, such as leaving school, moving home or being separated from parents. Other life events, such as a death or serious illness, were also identified in the data. The lack of research presents challenges in diagnosis. There is no consistency in the naming and definition of regression, hindering the clinical recognition and study that is a necessary precursor to evaluating treatment. As a result, no condition-specific care is available in the NHS.

Without proper understanding and in the absence of treatment, the human impacts of the condition are terrifying. Families helplessly watch their child become almost unrecognisable in the space of months, weeks or even days. Young people who have previously held down jobs or voluntary positions, and who led rich lives with interests, hobbies and friends, lose everything.

I will mention the story of Fran, who had just started secondary school when she was involved in an incident when one of her peers hurt and threatened her. As her mum Cristina described, the altercation caused Fran to shut down. Over a few days, she refused to engage in anything. Cristina was alarmed and took her daughter to the GP, who found high thyroid levels. Fran was prescribed thyroxine, but that only made her condition worse. She soon stopped talking altogether, and she only signed. Having been attending a mainstream school, she lost her independence. She wanted to be held the whole time, would not make eye contact, and was vacant behind the eyes. Cristina said she looked lost and sad.

After many more blood tests the thyroxine was stopped, and a referral to Great Ormond Street hospital was made for specialist help. As time went on, Fran slowly began to talk, read and write again, but nowhere near her previous standard. Great Ormond Street has carried out further tests, and the doctors believe that she has suffered trauma, which has caused her regression. Cristina says she just wants the old Fran back.

For Olivia’s story, she was 16 when she began to display symptoms of regression. As her parents Dimitri and Viviana have set out, Down’s syndrome regression disorder transformed their once vibrant, semi-independent daughter into someone they barely recognised. Prior to the onset of symptoms, she was engaged in school, participating in swimming lessons and actively engaging in family life. Now, her parents say it is as if she exists in a parallel world, spending most of her time isolated in bed and disconnected from life. She becomes distressed doing basic daily tasks, with screaming and physical resistance. They said their happy, loving daughter who once thrived has disappeared.

Through research online, Dimitri and Viviana identified Olivia’s condition as potential regression, and found themselves in the unprecedented position of having to educate healthcare professionals about the condition. Since, the paediatrician and neurologists have agreed with that diagnosis. As the mother to a daughter with Down’s syndrome, I cannot begin to imagine the torture of seeing your child’s personality slip away before your eyes, to then be met with only confusion and uncertainty when seeking professional support.

Parents of children with regression disorder often describe being bounced around the system between NHS services and staff, as few practitioners have the expertise to diagnose properly. When they finally manage to speak to the right clinician, some are even told to take their child to A&E. I do not say that to criticise healthcare professionals, but rather to highlight that they need to be given the right tools for the job—the right guidance and training—and to suggest that doctors should be able to say, “I do not know what this is,” when faced with a seemingly unique condition, instead of attempting to rule out every practical possibility.

The challenges faced by parents of children with regression disorder speak to a wider point: people with learning disabilities can be treated differently by our healthcare system, with their needs all too readily overlooked and their symptoms far too often attributed to their disability by clinicians who simply do not know them. As we all know, if a neurotypical child stopped eating and speaking overnight, or if they became incontinent, catatonic and lost all their personality, they would be in an ambulance straight to the hospital and it would be treated as a medical emergency.

I am glad that the Minister is here today to hear these testimonies, and some that my other colleagues will be sharing, because it is important that we understand the terrible effects of this condition. I do not think it is an exaggeration to say that Down’s syndrome regression disorder is destroying lives.

Mental Health Bill [ Lords ] (Ninth sitting)

Josh Dean Excerpts

Committee stage
Tuesday 24th June 2025 Public Bill Committees

[Natasha Irons (Croydon East) (Lab)]

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

The new clause seeks to ensure that if a patient dies while in detention under the Mental Health Act, an independent inquiry into their death will be required. Unlike deaths in prison or police-related deaths, deaths while a person is detained under the Mental Health Act are not automatically investigated independently. Currently, if a person dies while detained under the Act, the trust responsible for their care should carry out an internal investigation into their death to find out what happened and whether lessons can be learned. Those investigations, known as serious incident investigations or root cause analysis, do not have any independent oversight and can vary a lot from trust to trust.

Inquest, the only charity in England and Wales providing expertise on state-related deaths and their investigation, has found that the current system for investigating such deaths is not fit for purpose. In its statement to the Lampard inquiry, it outlined an anonymised case from 2010 in which there was a stark contrast between the findings of the NHS trust that investigated the death of a patient detained under its care and the inquest that took place two years later. The trust found very few failings in care, whereas the jury at the later inquest were critical of the patient’s treatment, which directly led to their death. The question we must ask ourselves is why we would allow deaths while in detention under the Mental Health Act to be investigated by those in charge of custody, when deaths in any other setting would not be. We do not allow the police to judge their own actions if a death occurs in custody, so why should it be any different for those detained under the Mental Health Act?

[Josh Dean (Hertford and Stortford) (Lab)]

My hon. Friend is making a fantastic speech. In the really dire circumstances of a death in detention, we are dealing with the most difficult and, for family members and loved ones, the most devastating circumstances. Given that, does she agree that it is important to make sure that the circumstances are reviewed thoroughly and independently?

[Natasha Irons]

My hon. Friend is absolutely right. This is about transparency and providing answers for the families of patients when the very worst happens.

Independence has allowed investigations into deaths in places of custody to improve significantly. As outlined by the independent advisory panel on deaths in custody, patients detained under the Mental Health Act now have the highest mortality rate across all places of custody. Indeed, the rate is three times higher than in prisons, when taking into account estimates of time in custody and the number of people in each setting. Behind each of these tragedies are families who have unanswered questions and who have had to fight to find out what happened to their loved ones, and vulnerable people who should have received better care.

In my constituency, there is the story of Catherine Horton, who died in 2017 while in the care of the South London and Maudsley NHS trust. The inquest into her death found that the risk assessment was not properly updated, with no formal risk assessment conducted, and no care plan on her arrival or while at the facility. There is also the story of Tia Wilson, who died in 2021 in the care of the same trust. The inquest into her death found that there were multiple failures in managing her risk, which contributed to her death. Then there is the story of the brother of one of my constituents, who absconded from his care, went missing, and was later found dead in a wooded area a stone’s throw from her home.

For each of those cases, we know that internal reviews will have taken place and assurances of improvements will have been made, and yet issues with risk assessments remain and families are left pushing for answers. This is not unique to south London; the internal review process is failing to deliver the necessary improvements across the country. Without embedding independence into the process, we risk undoing a lot of the good work that the Bill seeks to achieve. Adding independence into the investigation of these incidents where the very worst things happen gives trusts a genuine space to learn the lessons. It would improve patient safety and provide families with the transparency they need.

Although we must all acknowledge the incredible work that trusts do across our country to provide care for people at their most vulnerable, we must also provide a proper framework for challenge and improvement. The new clause is an opportunity to treat the deaths of people detained under the Mental Health Act with the same seriousness and care as deaths in other custody settings, to embed transparency, and to make the meaningful improvements that all patients deserve.

--- Later in debate ---

[Jen Craft (Thurrock) (Lab)]

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

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

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

[Josh Dean]

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

[Jen Craft]

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

Mental Health Bill [ Lords ] (Eighth sitting)

Josh Dean Excerpts

Committee stage
Thursday 19th June 2025 Public Bill Committees

[Zöe Franklin (Guildford) (LD)]

It is a pleasure to serve under your chairmanship, Mrs Harris. I thank the Minister for his comments on new clause 17, but I will speak to it briefly along with new clause 20, and then consider not pressing it later.

New clause 17 aims to end the harmful and inappropriate practice of detaining children on adult mental health wards. We know that children in mental health crises are among the most vulnerable in our care system. Placing them in an adult ward is not only developmentally inappropriate; it risks causing further trauma and harm. The practice continues not because it is clinically justified but because of a lack of specialist child and adolescent mental health provision.

Despite the existing statutory guidance under section 131A of the Mental Health Act, hundreds of children are still admitted to adult settings each year. That is a systematic failure. The new clause sets a clear goal: reduce the number of children detained on adult wards to zero within five years. It would also require the Secretary of State to publish within six months a concrete plan of how this will be achieved, including how children’s mental health services will be expanded. It is a question of not just capacity but political will. I urge the Committee to support the new clause if we press it to a Division. I say to the Minister that we are still looking for timelines. We need to protect young people from going into inappropriate adult mental health settings, as I have heard too often from residents in my constituency.

New clause 20 would place a statutory duty on the Secretary of State to report within 18 months how to improve transitions between in-patient settings for children and young people and those for adults. I heard a particularly distressing case in my constituency recently, where an individual turned 18 and almost the next day was placed in an adult mental health setting. It was completely inappropriate for that individual, and no real transition work had been done. I appreciate that the Minister says that there is clear guidance, but that guidance has clearly not been adhered to at all times.

The new clause would require statutory guidance for integrated care boards, local authorities and providers, covering essential components, such as clear pathways and timelines, joint working across services, early identification of those needing transition support, and updates to care plans that reflect changing needs. We believe that the new clause is clear, proportionate and achievable. It asks for a plan and for consultation and guidance that can support more stable, person-centred care at a critical point in a young person’s life.

The Minister has indicated that he will not support the new clause. If he is unwilling to do so, my request is that he sets out how the Government will ensure the issues around transitioning between child and adult mental health services are addressed—particularly a clear timeline. He has mentioned a number of documents coming forward that start to address these issues, but as I have expressed, clearly the guidance already exists but it has not been adhered to in all cases, so we would like to see the timeline.

[Josh Dean (Hertford and Stortford) (Lab)]

It is a pleasure to serve under your chairship once again, Mrs Harris. The Minister has set out in detail the function of clause 54, so I will not cover that in detail for reasons of time. I welcome the clause, which represents a step forward in regulating the placement of children and young people in adult treatment settings, and in ensuring their safeguarding. I welcome the fact that it recognises the need to review the existing safeguards available to young people.

The independent review of the Mental Health Act made recommendations in this area, including that when an under-18 is placed on an adult ward, the CQC should be notified within 24 hours, and that the reasons for and the proposed length of the placement should be recorded. I would be grateful if the Minister would set out what consideration the Government have given to those recommendations, and whether they will form part of the review.

I turn to the important matter of children and young people who are under 18 placed in adult treatment settings. I think we all recognise the extremely difficult context in which these detentions take place. We know that there is a serious shortage of specialist in-patient beds for children and young people, which means that places are often full or may not be available at a time of urgent crisis.

When someone under 18 is placed in an adult treatment setting, they are more likely to witness or even experience high levels of restraint, be denied support from their peers, and lack access to educational opportunities. These placements can actually cause further harm to children and young people’s mental health, and therefore be detrimental to their recovery. I will be grateful if the Minister can assure me of the actions that the Government will take to further safeguard those children and young people who hit crisis point and find themselves in adult treatment settings because of the shortage of beds. How will we ensure that they are protected from being placed in inappropriate treatment settings?

I do not wish to test your patience, Mrs Harris, but before I conclude I want to examine the point about children and young people a little further, given the interaction of clause 54 and associated new clauses with their treatment. I welcome the Government’s consistent restatement of the importance of getting the Bill right for children and young people. I know that the Minister takes such matters incredibly seriously, and I have listened carefully to what he has said this afternoon and throughout the Committee.

The Minister has stated that a number of the reforms relating to children and young people will be addressed in the code of practice, but that contrasts with the approach of many of the welcome safeguards set out for over-18s in the Bill. Will the Minister clarify why these issues are being addressed differently when it comes to children and young people, compared to adults? Children and young people are a uniquely vulnerable group.

On the point about the code of practice, I note that any deviation from that would need to be justified, but my understanding is that the code cannot impose duties on practitioners or require them to exercise their functions under the Act. I am concerned that putting safeguards for under-18s on a different footing from those for adults could make it harder for young people to access those safeguards. I welcome much of the work being done by the Bill, and I want to make sure that children and young people can also access its safeguards. I will be grateful if the Minister can address those points in his response.

In conclusion, I welcome the step forward that clause 54 represents, because it addresses an important issue that we need to get to grips with. I look forward to the Minister’s response.

[Gregory Stafford (Farnham and Bordon) (Con)]

It is a pleasure to serve under your chairmanship, Mrs Harris. I rise to speak in support of clause 54, but with the caveat that it would be much more effective if new clause 12, in the name of my hon. Friend the Member for Hinckley and Bosworth, were added to the Bill.

Regulation 18 of the Care Quality Commission (Registration) Regulations 2009 requires healthcare providers to notify the Care Quality Commission of certain serious incidents. However, it may not comprehensively cover all mental health-related admissions of minors. Clause 54 responds to concerns about transparency and safeguarding in child and adolescent mental health services, and aims to ensure that all relevant incidents are properly monitored and reported.

Like other hon. Members who have spoken, we welcome the Government’s shift to improve these standards; there is support for that across the Committee. The clauses about children and young people are some of the most vital parts of the Bill. They are vital not only to get the Bill right but, more importantly, to ensure that children are protected. That is why new clause 12, in the name of my hon. Friend the Member for Hinckley and Bosworth, is so essential to strengthen the Bill.

The new clause would amend section 131A of the Mental Health Act 1983, which governs the accommodation of children in mental health settings. It responds to ongoing concerns about the inappropriate placement of children on adult wards, which can be distressing and unsafe, and which is clearly contrary to best clinical practice. The new clause would introduce a requirement that hospital managers must justify such placements in writing, including an explanation of why no alternative was available, and the steps being taken to ensure the child’s safety and transfer to more suitable accommodation. The new clause would also introduce mandatory reporting to regulatory authorities when a child was placed on an adult ward for more than 24 hours, and to local authorities when the placement exceeds 28 days, or involves an out-of-area admission.

The new clause would ensure that children are placed on adult wards only when absolutely necessary. It requires the written justification and formal notification of placements. It involves local authorities and regulators in monitoring prolonged or out-of-area placements, and strengthens and clarifies existing provisions of the Mental Health Act. Most importantly, it aligns with clinical guidance on age-appropriate mental health care.

I turn to new clauses 17 and 20, tabled by the Liberal Democrats. I think that their purpose is in some ways similar to that of our new clause 12. However, they put the cart before the horse, or the horse before the cart —it depends on which way round we are. We are trying to fix the system by ensuring that nobody enters an inappropriate place unless there are exceptional circumstances; new clauses 17 and 20 try to exclude those circumstances, but without necessarily fixing the problem in the first place. Although I understand, as ever, the motivations and sentiments of the new clauses tabled by the Liberal Democrats, I do not think they will have the intended consequences; at least, I do not think they will be effective.

I have two questions for the Minister about clause 54. First, will the Department publish regular summaries of the notifications mentioned in the clause showing trends and disparities across the services or regions? Secondly, will the Care Quality Commission be resourced and empowered to act swiftly where patterns of overuse or misuse emerge?

Mental Health Bill [ Lords ] (Sixth sitting)

Josh Dean Excerpts

Committee stage
Tuesday 17th June 2025 Public Bill Committees

[Stephen Kinnock]

This amendment seeks to overturn the previous amendment tabled—sorry, I should have said “the clause”. The clause seeks to overturn the previous amendment, tabled by Earl Howe and Lord Kamall. Although we support the intention of the amendment, our view continues to be that it would be duplicative.

There are already many ways in which service user feedback is used to inform policy and practice. For instance, every year the Care Quality Commission conducts thousands of interviews and visits with people detained under the Mental Health Act 1983. That may result in the CQC investigating a complaint or requiring an action statement from providers about service improvements. Although there may be room to enhance existing feedback mechanisms, we would prefer to improve what we have rather than create something new that would risk confusion.

If the objective is to provide time and space for the person to reflect on their past experiences post-discharge, I reassure the Committee that that should already form a part of co-producing a person’s care in the community plan. We also intend to create space for individuals to reflect on past experiences when making their advance choice document, with facilitation from a suitably qualified person.

[Josh Dean (Hertford and Stortford) (Lab)]

Young people who have been through detention often report challenging circumstances following that detention. Rather than supporting them, that sometimes increases their trauma. Can the Minister assure me that, as part of the changes he just set out, we will still ensure that young people have the opportunity to feed their experiences back? What specific work will the Government undertake to gather those views from young people?

[Stephen Kinnock]

My hon. Friend makes an important point. We are absolutely committed to ensuring that we create a space for young people to provide feedback. Some of that will be around past experiences when making their advance choice documents, but much broader opportunities for feedback will absolutely be built into the system. We want this to be a learning process. It is important that the code of practice is not just a document that sits on the shelf gathering dust; it should be a live document. That is why the feedback is so important.

It should be noted that although reflecting on past experiences may be therapeutic for some individuals, for others it can be traumatic, so the measure should be entirely service-user led. We also continue to be concerned about the burden that the amendment would place on independent mental health advocacy services, which are already under strain.

--- Later in debate ---

[Aphra Brandreth]

I rise to speak to clause 41, which brings into sharper focus two pillars of a fair and rights-based mental health system: the provision of clear information to patients and the strengthening of independent mental health advocacy. It rightly recognises that, when a person is detained under the Mental Health Act 1983, often during a period of acute crisis and difficulty in their life, they need to feel that their clinical needs are being met, but in a way that respects them as individuals, with the same entitlements to dignity and agency as any other member of our society.

The clause provides for informal patients to be eligible for an independent mental health advocate. I welcome the extension to enable more individuals to access this vital advocacy. It empowers patients to know that independent advocacy is available, but we must ensure that there are sufficient resources so that those who choose this help are given sufficient support when they are in a potentially vulnerable position. As someone representing a constituency that is in England but borders Wales, I also welcome that these changes bring care into line so that advocacy help is offered to informal patients, regardless of which side of the border they are accessing treatment.

The clause places a renewed duty on services to ensure that information is given to patients clearly, promptly and in a form that they can understand. It introduces an obligation for advocacy providers to determine, through an interview, whether a qualifying patient wishes to use the service. This support is important; no person should be expected to navigate the complexities of mental health legislation, or their rights under it, without proper guidance. However, where there is a duty

“on hospital managers and others to notify providers of advocacy services about qualifying patients”,

can the Minister clarify who is meant by “others”? Will there be a list of people and roles who are given this responsibility?

The role of an independent mental health advocate is vital. These individuals can be a lifeline. They can help people to understand their rights and any medical treatment, and crucially, can support an individual to have their say about any treatment. Clause 41 rightly reinforces the importance of independent mental health advocates, and it is important that we match that ambition with the legal and practical steps to support them.

It is entirely right that we welcome the recognition of the role of independent mental health advocates, who serve a vital function in ensuring that patients’ voices are heard and their views represented, especially when navigating what can be an incredibly complex legal and clinical environment. Their independence is fundamental to not only their effectiveness but the confidence that patients and families can place in the system, which brings me back to my point. It is therefore important that we support independent mental health advocates with the resources that they need to do their job effectively.

If we are to rely further on advocates, we need to ensure that they are in a position to deal with that, so that we do not create statutory entitlements that are difficult to act upon. Actions, as well as words, are needed. At present, many areas already struggle with advocacy coverage. If we now place additional expectations on the service, and I believe that we will through this provision, we must ensure that there are sufficient numbers of trained, experienced independent mental health advocates across the country to meet rising demand. Can the Minister reassure the Committee that the necessary people with the skills and training are available to fulfil this expanded role?

We must also consider the patients’ experience, as has been the focus of so many of the remarks made in the Committee today. Again, I emphasise the vulnerability of patients at times of crisis. If we are to tell patients that support in the form of an advocate is there for them, we need to ensure that it is accessible and easy to reach and understand. Clause 41 moves us in the right direction, but implementation is everything. It must be backed by local accountability, adequate funding and clear operational guidance. This includes ensuring that all patients, regardless of background, language or capacity, are given support that is appropriate and effective.

It is vital to consider the wider implications of this clause. The reinforcement of the independent mental health advocate’s involvement should be mirrored by greater investment in advocacy services, stronger integration with care planning and more regular engagement with patients themselves on how these services work in practice. In our earlier discussions, my hon. Friend the Member for Farnham and Bordon suggested that we use trials, which could also be considered here to ensure that, as changes are brought in, they are matched by appropriate service levels.

I am largely supportive of clause 41, which I think moves us in the right direction towards a transparent mental health system that is there for patients, ensuring that they have a voice and are not an afterthought. As long as it is deliverable in practice, and does not give false hope to patients, the clause strengthens the Bill.

[Josh Dean]

It is a pleasure to see you in the Chair, Mrs Harris—when I wrote my speech, it said “this afternoon”, but it now says “this evening”. I rise to speak to clause 41 and schedule 3. I welcome the role that they will play in extending the right to access the services of an independent mental health advocate to voluntary patients in England not detained under the Mental Health Act, and ensuring that all detained patients are offered these services through an automatic referral, creating an opt-out system.

Independent mental health advocates play an important role in supporting patients detained under the Act to understand their rights and participate in decisions around their care and treatment. Clause 41 and schedule 3 seek to ensure that the individual needs of each patient are taken into account, even where they may not be able to engage in decision making about themselves. In doing so, they recognise the patient as an individual. This provides for important safeguards for patients and reinforces the Bill’s principles of autonomy and least restriction, which is a crucial part of bringing mental health legislation into the 21st century. I similarly welcome Government amendments 42 and 43, which seek to further strengthen the important safeguards in the Bill.

I hear the points that the Minister has made on children and young people admitted informally, but I would be grateful if he could address the matter further. As we know, informal patients are those who consent to an admission to a mental health hospital or whose parents consent to an admission on their behalf. Often, they are treated under the same or similar conditions as those detained under the Act. While detained patients will receive an automatic referral to advocacy services under the new opt-out scheme, my understanding is that that will not be the case for those admitted informally, meaning that informal patients would still be required to ask for the support of an independent mental health advocate.

Children admitted informally are likely to experience the same conditions as another child detained under the Act, but without the parity of access to advocacy services through the opt-out system. Because a parent is able to consent to informal treatment on their child’s behalf, they are one of few groups, if not the only one, able to be admitted informally without their own consent. Therefore, there is a concern that children and young people admitted informally may continue to experience problems accessing the support of an advocate. I seek the Minister’s assurance that the Government have considered fully the provision of advocacy services for informally admitted children and young people, and how this gap might be addressed.

I welcome how these parts of the Bill will embed those important principles of individuality, autonomy and least restriction, expanding the important safeguards offered by independent mental health advocates. I would be grateful if the Minister could touch on those points about children and young people in his response.

Parkinson’s Awareness Month

Josh Dean Excerpts

Thursday 1st May 2025 Commons Chamber

[Josh Dean (Hertford and Stortford) (Lab)]

I thank my hon. Friend the Member for Dunfermline and Dollar (Graeme Downie) for securing this important debate and for his eloquent speech. There was not a word that I would disagree with. As he described, Parkinson’s is the fastest-growing neurological condition in the world and around 153,000 people live with the condition in the UK.

In April, we marked World Parkinson’s Day and Parkinson’s Awareness Month. As part of Parkinson’s UK’s event here in Parliament, I had the opportunity to hear directly from people affected. I am especially grateful to Angie, from Parkinson’s UK, for taking the time to share her experience with me, and discuss how we can improve care and support for people living with Parkinson’s disease. It is for people like Angie in Hertford and Stortford that I wanted to contribute to today’s debate. For me, as I know will be the case for other hon. Members, it is personal. Through the experiences of friends and loved ones, I have seen at first hand the impact of a Parkinson’s diagnosis. I would like to briefly share their stories today.

First, the mum of one of my closest friends was diagnosed with Parkinson’s in 2018, a person whom it would be no exaggeration to describe as one of the warmest, kindest and most generous people you could meet—the kind of mum who makes you feel like part of the family and always insists you stay for dinner. She, too, has benefited hugely from the Movers and Shakers group. With the support of Parkinson’s UK, she and a group of friends—all working-age people diagnosed with Parkinson’s—set up the Herts Parkinson’s wellbeing directory. Working with the NHS and other local organisations, their work ensures that Hertfordshire residents diagnosed with Parkinson’s can quickly and easily find information and access local support to help them manage their condition. Residents can access their directory by visiting hertfordshire.parkinsonsuk.group. I thank them for their inspirational work supporting others with their diagnoses.

I also want to talk about Andy. When I first met Andy, he was introduced to me as the husband of my local Labour party’s long-standing—or perhaps long-suffering—election agent, Brenda. I was about 19 at the time, standing in a local council election, in what used to be true blue Hertfordshire, that I was destined to lose. Little did I know just how important Andy and Brenda would be to me by the time I was elected to this place in July last year. In so many ways, I would not be stood here today as the Member of Parliament for Hertford and Stortford were it not for Andy and Brenda.

When I was preparing for this debate, I reflected on the fact that I could not pin down when or how Andy had told me about his Parkinson’s diagnosis. That is a testament to Andy’s innate ability to turn topics that others might find difficult to discuss into everyday conversation—indeed, I learned much about myself through simple conversation while travelling from visit to visit with him during the general election—but it is also a testament to his willingness to speak openly about his Parkinson’s, breaking down the stigma for others with a diagnosis, and knowing that it does not define him and that it can make it easier for others to talk about their condition. Today, Andy Pellant is not just a mentor to me, but a friend. It is my privilege to put his name on the record in this debate.

I would like to take this opportunity to pay tribute to Julie Walker, who has been writing her regular “Parkinality” column in our local newspaper, the Bishop’s Stortford Independent, for the past seven years to help people to better understand life with Parkinson’s. Diagnosed aged 44, every year Julie does something to mark Parkinson’s Awareness Month in the hope that a cure will be found and that there will be no need for another. This year, Julie has compiled all the poems she has written about living with the condition into a book, with the proceeds going to Parkinson’s UK and Cure Parkinson’s. I encourage everyone in Hertford and Stortford, and in this Chamber, to support her work.

I would like to take this opportunity to highlight some of the positive work being done in our community to support those living with Parkinson’s. I was really pleased to read this week that Everyone Active is partnering with Parkinson’s UK for the fourth year running to provide residents with Parkinson’s with free fitness memberships. That means patients in our community will be able to access gym facilities, swimming pools and exercise classes at Hartham leisure centre in Hertford and Grange Paddocks leisure centre in Bishop’s Stortford, alongside up to three of their carers. I encourage any residents in Hertford and Stortford living with Parkinson’s to take advantage of that support.

I welcome the work that this Labour Government are undertaking to deliver the 10-year health plan for England, which will radically reform how people in Hertford and Stortford with long-term conditions like Parkinson’s are treated on the NHS. With hundreds of thousands of patients in England still on the waiting list for neurology services, and almost half waiting for more than 18 weeks to start their treatment, I similarly welcome how the elective reform plan will help to deliver more neurology appointments every year. No one should lay awake at night worrying that their condition is getting worse while they wait to see a specialist. By providing extra appointments, scans and operations in the evening and at weekends, I know this Labour Government will clear the backlog for neurology appointments. However, we can go further, and I do have a few policy questions I would like to raise; I would be grateful if the Minister could reflect on them in her response.

First, as other hon. Members have said today, a number of residents have written to me calling on the Government to implement the five steps set out in the Parky charter, which my hon. Friend the Member for Dunfermline and Dollar set out eloquently. The points around speedy specialists, instant information, a Parkinson’s passport, comprehensive care and a quest for a cure are incredibly important. I will touch on the Parkinson’s passport, because a number of constituents have written to me raising the matter of free prescriptions, to which people with Parkinson’s are entitled in Scotland, Wales and Northern Ireland, but not in England.

Supported by major Parkinson’s charities, delivery of the charter would help to deliver timely diagnoses, comprehensive care and dignity for all those living with Parkinson’s disease. I know the Minister takes these matters incredibly seriously and will have read the charter in detail, so I would be grateful if she could share what consideration she has given to it in her response.

When I spoke to Andy ahead of today’s debate, he highlighted how almost everyone he has met with a Parkinson’s diagnosis recognised that with the benefit of hindsight, the signs of their condition were present years before they were diagnosed. Has the Minister therefore considered the potential benefits of a national education programme to help people to identify the early signs of Parkinson’s disease?

I know that hon. Members across the House will have their own experiences or will have known someone with Parkinson’s disease. We have heard many moving speeches today, and I am sure we will hear more. The unity shown across the House today in support of those living with Parkinson’s and in support of finding a cure is to be commended, and I am grateful for the opportunity to have contributed to the debate.

Eating Disorder Awareness

Josh Dean Excerpts

Tuesday 1st April 2025 Westminster Hall

[Josh Dean (Hertford and Stortford) (Lab)]

It is a pleasure to serve under your chairmanship, Mr Stuart. I thank the hon. Member for Bath (Wera Hobhouse) for securing this important debate, and my hon. Friend the Member for Camborne and Redruth (Perran Moon) for his deeply moving and courageous speech.

As with many mental illnesses, eating disorders often present first in children and young people. Like other hon. Members, I am alarmed by the NHS England statistics that show that in 2023, 12.5% of 17 to 19-year-olds in England were living with an eating disorder. According to YoungMinds,

“Young people can use their behaviour around food and eating to try to cope with…difficult thoughts, feelings and experiences.”

YoungMinds also states:

“Over time, these kinds of thoughts and behaviours around food become very fixed and difficult to change—and may start to take over daily life.”

Early intervention for a young person struggling with an eating disorder is clearly critical if we want to support them to live a healthy, fulfilling life.

I was politicised at school by the disparities in the mental health support received by my peers, and we know that young people today are at the sharp end of the mental health crisis. I, too, have had friends who struggled with eating disorders and disordered eating, and during the general election last year I was contacted by a young woman who had waited four years for her first child and adolescent mental health services appointment. Sadly, that has become the norm, rather than the exception, for young people with mental illnesses.

I welcome this Government’s commitment to cutting NHS waiting lists and investing in talking therapies. I also welcome the commitment this Government have made to getting mental health support into our schools and delivering a network of Young Futures hubs with trained youth workers and drop-in mental health support, so that we can address eating disorders and mental health conditions early, and support our young people.

I have a few specific questions for the Minister, and I would be grateful if he could address them in his response. First, could he set out what the Government are doing to improve the early identification of eating disorders? For example, in 2023, Place2Be called for every professional working with children and young people, including in the healthcare workforce, to be trained to identify young people with potentially impairing eating behaviours. Has the Department had considered that?

Given the huge impact of the pandemic on the mental health and wellbeing of young people, could the Minister further set out what action the Government are taking to specifically support individuals who developed an eating disorder or mental health condition during that time? Finally, could the Minister set out what cross-departmental work the Government are undertaking to ensure a joined-up approach to supporting young people with eating disorders?

Those struggling with eating disorders deserve support and they need action, and we must treat eating disorders as the emergency that they represent. I was particularly moved by the words of the hon. Member for Bath, given her important work on the issue over a number of years, about the frustration of seeing things get worse, not better. I reflect on my experience as a young person going through school and watching my peers struggle with eating disorders and mental health conditions. Now I come into this place to represent my community, knowing that young people today are struggling so much more. That makes the urgency of the task even greater, so I thank the her again for her work and for securing the debate.

[Graham Stuart (in the Chair)]

Last but not least on the Back Benches, I call Luke Charters.