(1 day, 9 hours ago)
Commons Chamber
Jen Craft (Thurrock) (Lab)
People are the backbone of our NHS, and I am incredibly grateful to the healthcare staff who work in it, particularly in Thurrock, and who care tirelessly every day, often in difficult conditions, for my constituents. As a lifelong Thurrock resident, I have experienced their excellent care as a patient, and now as an MP I see at first hand when visiting services in our area that they perform all the time to a high level despite the immense pressure they are under.
This Bill is about supporting our excellent NHS workforce, prioritising home-grown talent to ensure there is a pipeline for the next generation of fantastic doctors and nurses. It is right that it is introduced as emergency legislation, because the former Government left the NHS in a critical condition. The Tories’ botched policies on immigration saw students and junior doctors who study in the UK competing against the world for foundation and specialty roles. Visa and immigration changes meant that thousands more international workers applied for coveted training positions in the NHS. In 2019, there were 12,000 applicants for 9,000 specialty training places. That figure has now soared to nearly 40,000 applicants for 10,000 places, with twice as many overseas-trained applicants as UK-trained ones.
Those bottlenecks mean that we are losing home-grown talent. We are losing people who grew up in our communities, studied at our schools and universities, and know our NHS back to front from personal experience, because they move to jobs abroad or in the private sector. The Bill begins to correct those mistakes. It implements the commitment in our 10-year plan for health to put home-grown talent at the front of the queue for medical training posts, ensuring that UK graduates are prioritised for foundation and specialty training places. It is a signal of this Government’s intent to improve terms, conditions, and opportunities for doctors. It is a downpayment on the tangible progress offered in the deal that the BMA unfortunately rejected in December, and it marks a critical step in supporting long-term sustainable workforce planning for the NHS, ending our—let’s face it—unethical addiction to hiring from abroad. There is also an economic case. Each year, we spend £4 billion on training medical students and doctors, only to not offer those graduates a training place to continue their careers in NHS. By ensuring that we retain that talent, we will ensure that patients in the UK benefit from the investment, which is better for local doctors and the taxpayer.
Retention of staff is particularly vital in Thurrock, where we have a critical shortage of GPs and an acute hospital trust ranked among the bottom in the country. It has always been difficult to recruit doctors to our area, not least because if staff get a job 10 miles down the road—even one mile down the road, in some cases—they can earn significantly more because they will benefit from London weighting. Last year, I held a roundtable with local GPs to ask them why they chose to work in our area and how I could encourage more young doctors to make it their base.
Many young people growing up in Thurrock say that they would like to return home after medical training. They are ambitious to improve our NHS and they want to serve their community. They want to live and work in the area where they grew up. Ensuring that those graduates are prioritised to local places and have local career training, advancing their ongoing professional development, is key to unlocking a sustainable long-term workforce for our area. I urge the Secretary of State to use the opportunity afforded by both this Bill and the upcoming workforce plan to ensure that the right professionals are in the right places geographically, in order to fill historical gaps in provision.
I also urge the Secretary of State to use the workforce plan to ensure that training, recruitment and retention in all professional areas is considered and planned for, particularly in those vital professions that are often overlooked. Allied health professionals, such as speech and language therapists, physiotherapists and occupational therapists, spring to mind and must feature in the plan, particularly those working in paediatric care, where waits for diagnosis are often felt acutely. I add a personal plea for the unique and important role played by learning disability nurses, who are already under strain. The charity Mencap, among others, warns that the role could collapse in three years’ time without urgent Government action. Those nurses are crucial in ensuring that some of the most vulnerable people in our society receive safe, effective healthcare, and in avoiding preventable deaths.
I welcome that the Secretary of State has brought this Bill forward, and the efficiency and speed shown in turning the legislation around at pace. I urge him to use the same efficiency and speed to bring forward the workforce plan, in order to set the right direction of travel to recruit, train and retain home-grown talent. I encourage him to bring forward the workforce plan as soon as possible, to ensure that those gaps in vital provision are addressed and to support our communities through our fantastic NHS well into the future.
(2 weeks, 1 day ago)
Commons ChamberI thank the hon. Member for her almost support for the Bill that we will present later to address much of this problem. Again, we are clearing up the mess we were left by her party, which, by changing the rules in delivering a workforce plan in 2023, essentially ramped up the supply of staff by extrapolating existing trends without any reference to the constraints or needs of the service. Our workforce plan will be different. We do hope for support for the Bill to remove some of the problem with foundation and specialty training places, and we look forward to rigorous debate on that subject.
Jen Craft (Thurrock) (Lab)
Unfortunately, my constituency is not unique in seeing long waits for diagnosis of neurodiversity. From 18 to 24 months is the expected waiting time in Thurrock, and some have to wait much longer. Given that, for a child, a wait of 18 to 24 months can sometimes be their whole lifespan or half their lifespan, will the upcoming workforce plan make sure that there is a plan for paediatric care, particularly for allied health professionals such as occupational therapists, speech and language therapists, and clinical physicians?
The services my hon. Friend outlines cover a number of different areas in different locations, and I think it is very important that the workforce plan we are bringing forward reflects a different model of care. We have seen more services going into secondary care and particularly hospitals, at the expense of community care and particularly primary care. That needs to change across the age spectrum, and the new workforce plan will be designed in lockstep with a new service design, more staff in neighbourhoods and more digital support, as well as to address the issues she outlines.
(3 weeks, 1 day ago)
Westminster HallWestminster Hall is an alternative Chamber for MPs to hold debates, named after the adjoining Westminster Hall.
Each debate is chaired by an MP from the Panel of Chairs, rather than the Speaker or Deputy Speaker. A Government Minister will give the final speech, and no votes may be called on the debate topic.
This information is provided by Parallel Parliament and does not comprise part of the offical record
Mr Bailey
I thank my hon. Friend and constituency neighbour, who raises a powerful point about specialist training. I know she has written to the Skills Minister and lobbied the Department for Work and Pensions directly to help the Minister who is responding today and close the skills gap on behalf of her constituent.
Those are the challenges and the situation that the toolkit is there to address and that its implementation must change. This is also a real opportunity for positive change as the Government’s NHS reform programmes move forward, because better play services for children in every part of England can not only reduce trauma and its long-term consequences, but save money through quicker procedures, lead to fewer cancellations, and reduce the need for anaesthetic.
Jen Craft (Thurrock) (Lab)
Much like my hon. Friend the Member for Stratford and Bow (Uma Kumaran), my constituent Ambia has written to me to highlight the fact that funding has been withdrawn for her level 7 apprenticeship in play therapy. Does my hon. Friend the Member for Leyton and Wanstead (Mr Bailey) agree that if the Government want to see the savings related to therapeutic play that he talks about, they need to invest up front?
It is a pleasure to serve under your chairship, Mrs Harris. I thank my hon. Friend the Member for Leyton and Wanstead (Mr Bailey) for securing this debate on such an important topic. I am grateful to him for sharing Hari’s story, and to Hari and Sarah for making the trip to Parliament. I have always believed in bringing patient voices to the heart of what we do in Parliament, and I hope they both leave safe in the knowledge that this Government are listening.
I strongly agree with what hon. Friends have said about the relationship between play and medicine. I volunteered in a healthcare setting as a play worker many moons ago, but more than 30 years later, the important impact of that work has stayed with me. Play and medicine are not in competition, and it is disappointing that Sarah had to fight so hard for play to remain an essential part of Hari’s care. I am pleased that my hon. Friend the Member for Leyton and Wanstead got a constructive response from Whipps Cross, but he is right to say that coverage of play services varies across the country.
Investing in our children is not just a moral mission; it is a downpayment on a better future. Children do not stop being children when they enter a hospital or a GP clinic. It is important to treat children like children when they are at home, at school or in hospital. There is growing evidence that therapeutic play can mitigate risks of trauma. We recognise that play services are integral to paediatric care, not a nice-to-have. We published the NHS England and Starlight Play Well toolkit in June last year, and I am delighted to see representatives of Starlight in the Public Gallery today. That included the first national guidelines and standards for commissioning and delivering health play services in England. NHS England is making sure that every manager of health play services knows about the Play Well toolkit across a wide range of settings. We are promoting it in community clinics, emergency departments, children’s hospices and acute paediatric wards. A range of communication channels have been used to raise awareness, including engagement with services via professional bodies, messaging via the chief nursing officer, and ongoing promotion through operational delivery networks directly to trusts and with professional groups.
The NHS is also undertaking evidence-based initiatives such as the iSupport programme, which focuses on ensuring children’s rights and wellbeing. The iSupport checklist aims to help professionals deliver safe, compassionate and child-centred care. The programme is already being picked up by children’s wards across the country. I look forward to meeting Starlight. We have been trying to get this meeting in the diary for some time, and I am delighted that we have managed to do that. I look forward to working with Starlight to see where we can go further to help kids like Hari avoid childhood trauma.
Jen Craft
Recently, my daughter had an in-patient stay, and I saw a Starlight notice on the door of the playroom. Having met Starlight, it gave me quite a lot of confidence. In fact, thanks to the play therapist, the most traumatic thing about my daughter’s visit was when she had to leave, as she had such a good time. That was in an inner-city hospital; we also have a regional hospital that does not have the same resources. Can the Minister say how play therapy can be rolled out across the country so that every child can benefit?
As I stated earlier, we are promoting the Play Well toolkit right across the country through a variety of communication methods. We look forward to a variety of healthcare settings using that toolkit to deliver in their local areas.
That moves me on to mental health. Under this Government, all children will have access to a mental health support team in their school or college by the end of this Parliament. We are also committed to opening 50 Young Futures hubs over the next four years, which will bring together services to help young people at a community level. There have been calls for us to go further on the children’s health workforce. The Minister for Secondary Care, my hon. Friend the Member for Bristol South (Karin Smyth), is absolutely committed to making sure that we have the right skills to care for patients, including children, when they need it. We are working through the changes and what they will mean for different professional groups. I know that mental health will be at the top of the agenda, not least for children.
Health play therapists are trained through foundation degrees. The toolkit that has been developed sets out clearly how services should support practical training of specialists. Games and active play build social and emotional skills and support children’s wellbeing. We want every child to feel safe from harm and for their families to feel supported. We know that the poorest children are more likely to develop long-term illnesses. That is why it is shameful that child poverty has increased by 700,000 since 2010.
With more than 4 million children now living in poverty in the UK and 800,000 children using food banks to eat, my right hon. Friend the Chancellor took the necessary decision to fund the biggest reduction in child poverty of any Budget this century. We are expanding free school meals to half a million kids whose parents are on low incomes, and lifting hundreds of thousands out of poverty by removing the two-child benefit cap.
In addition, there is a £126 million funding boost for the family hubs and Start for Life programme this financial year. Best Start family hubs will be rolled out to every local authority from April. We have kept our manifesto promise to restrict junk food advertising targeted at children. We have announced improvements to the soft drink industry levy, and we have invested £11 million in local authorities to deploy supervised toothbrushing for three to five-year-olds in schools and nurseries in the most deprived areas of England.
On neighbourhood health, my hon. Friend the Member for Leyton and Wanstead raised an important point about multidisciplinary teams for children and young people, which should take an holistic approach to looking after children. The aim is to embed general paediatricians in primary care to give specialist paediatric advice and reduce the need for out-patient paediatric referrals. Those discussions ideally bring together wider health, social care and educational specialists. The make-up of the teams is locally determined by integrated care boards, but play specialists could absolutely be involved as part of a neighbourhood team.
(1 month, 2 weeks ago)
Commons ChamberI thank the Chair of the Select Committee for that contribution, which is really important on two fronts. First, she is absolutely right that this really is not the time for this kind of disruption, and I think the BMA knows that. I do not think that those I am dealing with are bad people. I think they are frustrated with me and this Government—they do not think we have gone far enough—and I am equally frustrated with them, and the fact that they do not recognise how far we have come, and how fast, but that is the nature of the dispute. With the extended mandate, there is an opportunity for us all to park this and, in the worst-case scenario, revisit it in January. I hope, even now, that the BMA will seize that opportunity. I think it would do it the world of good in the eyes of the public, and in the eyes of its members and the wider NHS family.
I am really glad that the Chair of the Select Committee raised the point about international medical graduates and the overseas workforce. The NHS has always been an international employer. We have been so fortunate as a country that, since 1948, people have come from around the world to help us build and sustain a national health service. Without them, it would collapse, and we never want to be a country that closes the door to international talent.
What is extraordinary is that many of those overseas doctors, when they see the competition ratios and compare our approach to that of their home country and other countries, think we have lost the plot. They cannot believe we do not already do this, so I think they will understand what we are doing and why. I hope they will be reassured that international recruits who have given service to the NHS will also be able to apply for specialty places, because we want to recruit and retain great talent, but they will also recognise how this is a game changer for the ratios for homegrown talent. I think they will understand that. I think they will respect that. Not least, I have been at pains as Health Secretary, given some of the ugly rhetoric that has come from one corner of this Chamber, to emphasise that, while some people in this House might tell those international recruits to go home, as far as we are concerned they are home.
Jen Craft (Thurrock) (Lab)
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?
I am grateful to my hon. Friend and I hope that point is not lost on the BMA. On the Labour Benches, we are the party of labour. We were created by the trade union movement to represent the interests of working people. That has been our calling for more than a century, since this party was founded. We have shown through our actions, not just our words, that this is a party in government who are committed to defending and extending the rights of working people, to improving pay and conditions, to clamping down on exploitation, and to making sure that this is a Government with and for the people.
The BMA has a willing partner with this Government. I sometimes feel like the Government have changed, the policies have changed and the approach has changed, but the BMA’s tactics towards us have stayed the same. I understand their cynicism about politics and their grievances with the situation they are working in, but I ask them also to recognise the progress we have made when we work together. There is an opportunity confronting them now to make further progress and I urge them to seize it.
(1 month, 3 weeks ago)
Commons ChamberWe will see what happens. It would be interesting to know exactly where the money will come from. [Interruption.] The Secretary of State just said that if the prices go up, there will be no cuts to the NHS budget, but where will the money come from? Which other part of the national health service and social care will the money come from? We will have to wait and see.
The Budget last week made no mention of social care. After all, Labour’s only plan is to delay coming up with a plan for a few more years, despite the urgency and the scale of the challenge. Many of us entered the cross-party talks in really good faith, and they were encouraging, but we have only met once. Surely we should be getting on with it. The message was loud and clear that we want to work together, but we want to get on with it. Please can we have another meeting, so that we can get on with tackling this really important issue?
It is not quite true to say that social care is unaffected by what was announced. The increase in the national living wage will be welcomed by those on the lowest incomes, but the Nuffield Trust estimates that it will cost the social care sector £1.2 billion. The sector is already struggling with last year’s national insurance contributions hike, so who will pay for this? Will there be funding cuts to other parts of the health budget? Will self-funders have to fork out yet more again, or will it be passed on to local authorities, inevitably leading to council tax rises? What impact will this national living wage increase have on wider pay in the sector?
Jen Craft (Thurrock) (Lab)
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 am asking the question of who is going to pay for it. There is no detail in anything this Government do. They are full of plans and no delivery. The sectors I have been meeting are asking those questions—where is the money coming from?
Dr Lauren Sullivan (Gravesham) (Lab)
May I beg your indulgence briefly, Madam Deputy Speaker? This morning, I had the honour of attending the funeral of Makhan Singh, a kind and dedicated public servant in Gravesham. He served as a councillor for 36 years and was the first Sikh mayor in Kent and a freeman. He spent his life living the essence of Sikhism: service to others before oneself. He loved politics, but he loved helping people more, so I would like to send much love to his family as he will be missed.
This Budget delivers on much of the manifesto to help residents of Gravesham. I would like to touch on a few things that will help Gravesham. First, the Budget will help children out of poverty. Children and young people are not just our future; they are here, and the mark of any decent society is how we look after and support our children and young people.
I am delighted to see many of the measures in the Budget, including the removal of the two-child limit, which will help over 3,000 children in Gravesham, as well as money for breakfast clubs and childcare, so that families can balance the competing pressures of work and raising a family. In addition, the youth guarantee scheme will help young people who are starting out.
There is help for Gravesham’s businesses, too. The Chancellor spoke to local businesses in Gravesham about reforming business rates to ensure that high streets have the same opportunities despite the competition with large supermarkets and online retailers. The Budget starts the journey of reforming rates, helping 1,000 businesses and ensuring that warehouses and online retailers pay more, including during the transition.
The Budget will help with the cost of living. Freezing rail fares, reducing energy bills, freezing fuel duty and freezing prescription charges will help in the months ahead, as will keeping the triple lock on state pensions.
In the Budget, the Chancellor mentioned the lower Thames crossing. The Treasury and Transport teams will know of my long-running campaign on that. My hon. Friend the Member for Thurrock (Jen Craft) and I will be holding the Government to account on the promises made to our communities. We have been calling in particular for the permanent restoration of the Gravesend-Tilbury ferry passenger service, which was cut by Kent county council and Thurrock council. We think that a small amount of the lower Thames crossing toll money should be ringfenced to provide that service.
Jen Craft
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.
Dr Sullivan
I could not agree more.
After 14 years of cuts and austerity for local councils, communities like mine in Gravesham have been impacted by so many reduced services. In welcoming the Budget, I call for Gravesham’s fair share of the fair funding formula. The £1.5 million pride of place funding is a fantastic start as a downpayment for investment in Gravesham, but the Budget will be meaningful only if it reaches places like my constituency, which has carried the weight of neglect for years. Gravesham has the potential, talent and ambition to thrive, but it needs sustained investment to unlock that promise. I support the Budget and will continue pressing for the funded services and local infrastructure that my constituents have been denied for so long.
(3 months, 2 weeks ago)
Commons ChamberI call Jen Craft to make the final contribution. All those who have contributed to the debate should make their way back to the Chamber.
Jen Craft (Thurrock) (Lab)
Thank you very much, Madam Deputy Speaker—I will be as brief as possible. I will speak to new clause 37, which stands in my name and which seeks to support the Government in ending the scandal of the inappropriate detention of people with a learning disability and/or autism. I declare an interest as the chair of the all-party parliamentary group on learning disability.
Currently, a learning disability or autism, in and of itself, can be grounds for detention under the Mental Health Act. As we all know, this is an absolute scandal—something from a previous age that should be a source of moral shame to everyone in our community. The Bill seeks to address this by removing autism or a learning disability, in and of themselves, as criteria for detention under the Mental Health Act. That offers a lifeline—a light in the tunnel of darkness that a number of people who are detained under the current Act face.
However, the impact assessment for the Bill states that the proposed changes to the detention criteria in clauses 3 and 4
“will only be switched on when systems are able to demonstrate sufficient level of community support”.
The families and carers of those have a learning disability or autism and who are detained under the Mental Health Act, and the organisations that support them and people who advocate for them, know that too often this vulnerable group of people are pushed to the bottom of a list of competing priorities, and very often slide off it.
We know that this Government and the Department of Health and Social Care have a number of competing priorities to deliver on, and the concern for people who fall into this bracket under the legislation is that their concerns just will not be addressed and that this absolute scandal will continue in perpetuity. People who have a learning disability or autism will be detained because our community services just are not up to snuff; we have so categorically failed them that the only thing we can think to do is to lock them away from society.
Jen Craft
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.
(6 months ago)
Commons ChamberWe absolutely need to look at reducing waste in the NHS, so I would be delighted to pick up that case. Can I also say an enormous thank you to Holly’s family for the work they are doing in such unimaginable circumstances? I really admire people who put themselves forward to serve others in that way after such a painful experience.
Jen Craft (Thurrock) (Lab)
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.
(6 months, 2 weeks ago)
Westminster HallWestminster Hall is an alternative Chamber for MPs to hold debates, named after the adjoining Westminster Hall.
Each debate is chaired by an MP from the Panel of Chairs, rather than the Speaker or Deputy Speaker. A Government Minister will give the final speech, and no votes may be called on the debate topic.
This information is provided by Parallel Parliament and does not comprise part of the offical record
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.
Ayoub Khan (Birmingham Perry Barr) (Ind)
I thank the hon. Member for securing this debate. In Birmingham, we certainly have hundreds—I do not have an exact figure. Does she think that those who are suffering from Down’s syndrome should have a letter written to their GP outlining that there is this other condition—one of regression? This is so that, when and if the worst occurs, at least the general practitioner’s notes, which are now shared across the NHS, would reflect that potential scenario.
Jen Craft
I will just say with kindness that people do not suffer from Down’s syndrome—I know it was a turn of phrase—but we tend to say they have it. It is a condition; it is a disability and is part of the make-up of what makes a person a person. I think it is fair to say that people do suffer if they have Down’s syndrome regression disorder, and their families do as well.
The hon. Member touches on a wider point—the real need for education of healthcare professionals and those who come in contact with people with Down’s syndrome to be aware that this regression can occur, in order to spot the early signs, because the earlier they intervene, the better the outcomes. They need to understand that it might not be attributable to late autism or early dementia, but is something in and of itself, and we need to look at how we spread that knowledge more widely.
As I have said, Down’s syndrome regression disorder is destroying the lives of those it impacts, but there is hope for those affected. Trials of treatment in the USA have produced positive results: the use of intravenous immunotherapy was shown to help approximately 20% of individuals who are experiencing regression.
I will not wade into the complex debate about the merits or otherwise of specific types of medication or treatment, but what I am calling for, and asking of the Minister, is a commitment to action. We must work towards the creation of a clear assessment pathway, with uniform diagnostic criteria, to improve the identification and awareness of regression. Health and educational practitioners working in the space of special educational needs and disabilities need guidance to fill the current void in knowledge. Anyone who might come in contact with a young person with Down’s syndrome needs to be aware that regression can occur, whether in mild or more severe forms.
We desperately need to research regression further to understand its causes, investigate the mental health dimension of the condition, interrogate the efficacy of potential treatments and roll out treatments where they are determined to be effective. I look forward to hearing the Minister’s thoughts on how we might work together to achieve that, and I would welcome a determined commitment to meeting those who are already deeply involved in the research, treatment and experience of Down’s syndrome regression disorder.
I thank those who brought the condition to my attention, the Down’s Syndrome Association for its ongoing work in this space, and the Down Syndrome Medical Interest Group. I also thank the clinicians, including Dr Ella Rachamim for her work in this area, and my friends at Upwards with Downs. To the families who have shared such personal accounts of this horrifying condition, I hope that today is a start of a long-overdue and much-needed process of getting recognition of the condition and the treatment pathway that families and people with Down’s syndrome deserve.
Several hon. Members rose—
Jen Craft
I thank all colleagues who have taken part in today’s debate. I hope it has been a chance to raise awareness of this much overlooked and under-researched condition. I thank colleagues who shared stories of their individual constituents. My hon. Friend the Member for Portsmouth North (Amanda Martin) shared the story of Ewan, and my hon. Friend the Member for Hertford and Stortford (Josh Dean) shared Jude and Ruth’s moving story.
I also appreciate the contribution of the hon. Member for Strangford (Jim Shannon), who talked about the wider implications for families of caring for someone with Down’s syndrome, as well as the contribution from the hon. Member for Birmingham Perry Barr (Ayoub Khan), who raised the need for more awareness of Down’s syndrome regression disorder.
I thank the Liberal Democrat spokesperson, the hon. Member for Chichester (Jess Brown-Fuller), for her kind words and for talking about the need for co-ordinated care and lifelong support for those with Down’s syndrome. I am also grateful to the right hon. Member for East Hampshire (Damian Hinds) for his contribution. He spoke about the need for more research, and for better support and care for the families of people with Down’s syndrome.
My thanks also go to my hon. Friend the Member for Mid Cheshire (Andrew Cooper) for sharing a passionate plea to listen to parents and families, as we are the real experts. That is something I would like the Minister to embed in the guidance under the Down Syndrome Act—listening to those who are experts in the condition. Fairly often, when a person does not receive timely treatment for things like Down’s syndrome regression disorder, it is because those who know them best are not listened to. They are seen the way they have presented on the day, without their entire history being taken into account.
I also thank the shadow Health Secretary, the right hon. Member for Melton and Syston (Edward Argar), for saying that this is very much a cross-party issue. I hope we can move forward in that spirit and see it as something that is beyond the political sphere. We need to act on it so we can come to a resolution for those who are affected by this horrifying condition.
Finally, I thank the Minister for his comments, and particularly on his commitment to publishing the Down Syndrome Act guidance in the autumn, which I am sure will be welcomed by many. I hope there will be specific measures to raise awareness of Down’s syndrome regression disorder, and a pathway so that parents, carers and those with Down’s syndrome regression disorder can get support. Signposting can often be helpful in showing them where to go.
One thing that comes up time and again, when speaking to parents of children or young people with Down’s syndrome regression disorder, is that they are often unaware of it until it happens. It is helpful to understand that what is happening to their child is not unique, and that it is a recognised condition for which treatment is available. That is one of the more helpful things that the Government can do.
Again, I thank everyone for taking part in this debate, and I hope this is the start of real progress on the issue.
I add my thanks to all who participated.
Question put and agreed to.
Resolved,
That this House has considered Down’s syndrome regression disorder research.
(6 months, 3 weeks ago)
Commons ChamberOrder. Some 60 Members wish to participate. Clearly, the statement will likely impact every constituency in the country, so I understand why so many hon. Members wish to question the Secretary of State. It is our intention to try to call everybody, but there is important business later that has to be reached. May I urge brevity on all Members, and short answers on the Secretary of State? Health Committee member Jen Craft will now set an example.
Jen Craft (Thurrock) (Lab)
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?
I certainly can give my hon. Friend that reassurance. We launched the biggest consultation since the NHS began. We had over 270,000 contributions, 250,000 thousand responses and almost 2 million visits to the change.nhs.uk website, so I can absolutely give people the assurance that staff and patients’ fingerprints are all over the plan. That is why we have such a rich plan, in which people can have confidence.
(7 months ago)
Public Bill Committees
Natasha Irons
I beg to ask leave to withdraw the motion.
Clause, by leave, withdrawn.
New Clause 26
Use of restraint and restrictive intervention
“(1) The Mental Health Act 1983 is amended as follows.
(2) In Part II (Compulsory Admission to Hospital and Guardianship), after section 7, insert—
‘7A Use of force in connection with admission for assessment or treatment
(1) A relevant organisation that operates a hospital must appoint a responsible person for the purposes of this section.
(2) The responsible person must—
(a) be employed by the relevant health organisation, and
(b) be of an appropriate level of seniority.
(3) The responsible person must keep a record of any use of force by staff who work in that hospital against a person (“P”) who—
(a) has been admitted for assessment or treatment under sections 2 to 5 of this Act; or
(b) is on the hospital premises and is at risk of detention under this Act.
(4) The Secretary of State must by regulations provide for the risk factors to be considered under subsection (3)(b).
(5) A record kept under this section must include—
(a) the reason for the use of force
(b) the place, date and duration of the use of force
(c) whether the type or types of force used on the patient formed part of the patient's care plan;
(d) the name of the patient on whom force was used;
(e) a description of how force was used;
(f) the patient's consistent identifier;
(g) the name and job title of any member of staff who used force on the patient;
(h) the reason any person who was not a member of staff in the hospital was involved in the use of force on the patient;
(i) the patient's mental disorder (if known);
(j) the relevant characteristics of the patient (if known);
(k) whether the patient has a learning disability or autistic spectrum disorders;
(l) a description of the outcome of the use of force;
(m) whether the patient died or suffered any serious injury as a result of the use of force;
(n) any efforts made to avoid the need to use force on the patient; and
(o) whether a notification regarding the use of force was sent to the person or persons (if any) to be notified under the patient's care plan.
(6) The responsible person must keep the record for three years from the date on which it was made.
(7) The Secretary of State must ensure that, at the end of each year, statistics are published regarding the use of force by staff who work in hospitals under the conditions set out in this section.’”—(Jen Craft.)
This new clause would require hospitals to record information on all incidents in which force is used against patients with mental disorders, in line with the reporting currently required in mental health units, including force against those at risk of detention for assessment or treatment. It would also require the Government to publish annual figures on the same topic.
Brought up, and read the First time.
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.
Anna Dixon
I thank my hon. Friend for drawing attention to this gap in the current law. Would she acknowledge that there is now evidence that the use of restraint and restrictive interventions can have serious long-term effects on a patient’s health and wellbeing? Indeed, there can also be an impact on those staff members who are required to carry it out, often with poor training.
Jen Craft
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. 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—
Jen Craft
My apologies; they are both lovely places. My hon. Friend spoke earlier about the impact that mental health treatment can have on people in regard to race and ethnicity, and the importance of including demographic data. We know that black people are disproportionately subject to use of force and restraint, which is why recording this data in a mental health unit is acknowledged as important. However, if a patient is subject to restraint outside a mental health unit, there is currently no mechanism to record that.
The new clause would also require the Secretary of State to publish annual statistics on how restraint has been used outside a mental health unit. I believe that the Minister’s predecessor agreed to look at closing this loophole. To date, however, action has not necessarily been forthcoming. People continue to be subject to the use of force or restraint, and we have no means of knowing how often it has occurred, to whom it has occurred or whether it has taken place inappropriately. I encourage the Minister and other members of the Committee to consider how we can ensure that the use of restraint and force is appropriately recorded in all medical settings, not just in mental health units.
I thank my hon. Friend the Member for Sheffield Hallam for tabling this important new clause, and I thank my hon. Friend the Member for Thurrock for moving it on her behalf.
The new clause seeks to recreate some of the duties from the Mental Health Units (Use of Force) Act 2018, but apply them to patients detained under sections 2, 3, 4 or 5 of the Mental Health Act or those at risk of detention under that Act. This would cover patients receiving mental health treatment who are not in specialist mental health beds, such as young people with eating disorders who are detained in general paediatric wards.
There are practical reasons why we do not support the new clause as it is drafted. For the vast majority of mental health patients, this duty would duplicate duties that already exist under the 2018 Act. Although the new clause would go further in requiring the recording of use of force outside mental health units, it does not require any further use of that data to develop policies or train staff, which is a key element of the 2018 Act. As drafted, the new clause would introduce new duties to record and report data, without there being any clear further use of that data.
I accept, however, that we need to do more to reduce the use of restraint for all patients detained or at risk of detention under the Mental Health Act. NHS England has an ongoing programme of work, overseen by the reducing restrictive practice oversight group, to address this issue for people experiencing acute distress and mental health difficulties. My officials have also written to the CQC to commission it to develop a viable and proportionate mechanism for reporting use of restraint to the CQC, drawing on the views of NHS Providers and NHS England. Any potential changes can be made in regulations and would not require primary legislation, so we can continue this work in parallel with the passage of the Bill, delivering on our commitment to reduce the use of force for mental health patients. For those reasons, I hope that my hon. Friend the Member for Thurrock will withdraw the new clause.
Jen Craft
I thank the Minister for his comments. I am reassured, as I am sure my hon. Friend the Member for Sheffield Hallam will be, to hear that he accepts the need to do more about the use of restraint, regardless of the setting in which it occurs. I am also pleased to hear about the measures by which he is seeking to do so in parallel with the passage of the Bill. I am content with what the Minister said, and I imagine my hon. Friend the Member for Sheffield Hallam will be, too. I beg to ask leave to withdraw the motion.
Clause, by leave, withdrawn.
Clause 55
Power of Secretary of State to make consequential provision
Question proposed, That the clause stand part of the Bill.
The Chair
With this it will be convenient to consider the following:
Clauses 56 to 58 stand part.
Government amendment 39.
Clause 59 stand part.
I should say to Members that we have 10 minutes left. If they want to conclude the Committee’s business this morning, they should bear that in mind.