Learning Disabilities and Autism: Solitary Confinement in Hospital
Baroness Hollins Excerpts(1 year, 7 months ago)
Lords ChamberRead Full debate Read Hansard Text Watch Debate Read Debate Ministerial Extracts
Baroness Hollins
To ask His Majesty’s Government whether they plan to expedite implementing the recommendations in the report My heart breaks—solitary confinement in hospital has no therapeutic benefit for people with a learning disability and autistic people, published by the Department of Health and Social Care on 8 November.
Baroness Hollins (CB)
My Lords, I declare an interest as I have autistic family members and my son also has a learning disability. I am grateful to all noble Lords who have signed up to speak in this topical debate: all ideas on how to make progress are needed. I thank the Minister for agreeing to meet interested Members of your Lordships’ House after the debate. My gratitude is also due to the panel of experts by experience and professionals who contributed to the report we are discussing today. The report is called My Heart Breaks—Solitary Confinement in Hospital Has No Therapeutic Benefit for People With a Learning Disability and Autistic People.
It is four years since the Secretary of State asked me to review the effectiveness of a new Department of Health-run programme of independently chaired reviews called ICETRs. The aim was to speed up discharges of people detained under mental health legislation in long-term segregation, following a CQC report that highlighted serious concerns about its use. We designed the review process to include each person’s life story, the reason for their admission to hospital and to long-term segregation, any mental health diagnosis and the treatment plan.
People with learning disabilities and autistic people have a higher incidence of adverse childhood experiences, yet none of this information was routinely provided to admitting clinicians. Two phases of reviews took place, 191 in total, with 115 people found to be in long-term segregation at any one time. ICETRs ended in March this year. They were a good diagnostic tool but, disappointingly, the wider system initially failed to make the changes recommended in the reviews, so two additional interventions were introduced: senior intervenors and HOPE(S). I shall come back to HOPE(S).
There is no therapeutic benefit to isolating people in long-term segregation and we would like to rename it “solitary confinement”, which is considered internationally to be a human rights abuse. I welcome the plan for the CQC to offer an ICETR to everyone detained in long-term segregation, but will the Minister tell the House when the CQC will recommence this programme? Will he commit to fund these reviews for as long as long-term segregation is in use in mental health hospitals, not just for the two years currently announced?
Equally importantly, will he commit funding to expand and extend the culture change programme HOPE(S), which has been running alongside the reviews and has been endorsed by the CQC as outstanding? Forty-seven people receiving support from HOPE(S) have progressed out of long-term segregation, following an average stay in LTS in that hospital of 441 days. Some of these people will have been moved in LTS across a number of services, so the real duration in solitary confinement will have been longer, and eight of the 47 were children and young people.
Examples of the very real differences delivered by HOPE(S) include someone hugging a brother for the first time in two years, having their first haircut in five years, eating meals at a table rather than on the floor or leaving hospital and having a full life in the community. I was pleased to see, in His Majesty’s Government’s response to recommendation 4 in my report, a commitment to help patients and families become aware of their rights. I look forward to seeing how that is going to be done.
With no mental health Bill in the gracious Speech, the panel’s recommended changes to the code of practice need to be achieved by different means. Minimum standards are urgently needed for the accommodation and care provided for people in an LTS. The pipeline of admissions continues; discharge is only part of the story. We estimate that there are still more than 100 individuals detained in LTS. Some are alone in rooms without any natural light, with just a mattress on the floor and without toilet or washing facilities. In quite a number of reviews, serious safeguarding concerns were raised about the manner in which people were being held. If clinicians and managers know that it is causing harm to an individual, does not its continued use become a patient-safety incident? The planned use of LTS, which is currently lawful, might not itself constitute a patient-safety incident, but should not the accommodation and care provided at least meet the minimum standards proposed? How does the noble Lord suggest that minimum standards can be legislated for and providers held accountable? Could CQC’s fundamental standards be used more rigorously to regulate LTS accommodation?
I have another suggestion: would it be possible to require the Secretary of State’s approval for the use of LTS in psychiatric hospitals, without needing primary legislation? There is a precedent for such approval for under-10s entering secure welfare, because it can cause serious long-term outcomes for the child. The use of LTS in both children and adults has a similar potential to cause serious long-term outcomes. My proposal would introduce a limit of a few days for urgent use of LTS, and, after that limit was reached, an application to the Secretary of State would have to be made by the chief executives of the provider hospital and the commissioner. They would have to confirm that safeguarding referrals had been made and that commissioners had visited the detained person. This would be another way to make LTS notifiable and its use monitored. Seeing the reality of LTS for themselves would mean that commissioners knew what they were commissioning and hopefully would insist on compliance with minimum standards for the accommodation and care provided. I hope the Minister will consider this proposal very seriously.
Major concerns were the lack of accountability in the whole system for the outcomes for individuals, and a lack of project management and specialist advocacy. I suggest there is a strong case for a specialist central advocacy service for people with a learning disability and autistic people in mental health hospitals. This is something His Majesty’s Government could take forward in the absence of primary legislation, as they are doing in relation to culturally appropriate advocacy. It sometimes seems a bit like the old joke: there was an important job to be done and Everybody was sure that Somebody would do it. Anybody could have done it, but Nobody did it. Somebody got angry about that, because it was Everybody’s job. Everybody thought that Anybody could do it, but Nobody realised that Everybody would not do it.
Board-level oversight of the use of LTS should change the wrongful marketing of specialist provision when, in reality, a hospital has been offering little more than warehousing people who have been failed in the community. Discharging people is one thing. Preventing their admission in the first place is even more important, but this requires government commitments to deliver on the Building the Right Support action plan. There are examples of good practice. I do not have time to describe them, but internationally we could learn from what is happening in, for example, Trieste, and the START programme in the United States, which is now in 17 different states. They focus on working with people in the community and trying to prevent hospital admission, and keeping admissions short if they happen.
The point is that without reliable and respectful family-based and relational care in the community, we as a society are knowingly increasing the chances that autistic children and adults and those with learning disability will continue to be excluded, lonely and traumatised. We will increase the chances that they will become overwhelmed at moments of transition or crisis, such as a death in the family. They will be admitted to hospital as a so-called last resort, but often a first resort, because nothing else was provided. A number of them will then be detained in LTS in a downward spiral which could have been prevented.
It is too risky to expect wise local commissioning for minority groups with poorly understood needs without some decent minimum standards for care and support to hold commissioners to account. I will end by repeating the demands of one of the experts by experience on my panel, the mother of a young man who had been traumatised by his time in hospital, including in solitary confinement. She is clear about what is needed: accountability, accountability and accountability. She reminded me that the Chancellor showed great concern about poor care in some assessment and treatment units when the right honourable Member was chair of the Health and Social Care Committee. We need the money now. I beg to move.
Mental Health: Children and Young People
Baroness Hollins Excerpts(1 year, 7 months ago)
Lords ChamberRead Full debate Read Hansard Text Watch Debate Read Debate Ministerial Extracts
Baroness Hollins (CB)
My Lords, it is my honour to follow my noble and learned friend Lady Hale, whose eminent career has included, of course, serving as President of the Supreme Court of the United Kingdom, and being the first woman appointed President of the Supreme Court.
We were brought up in different parts of the West Riding of Yorkshire, and both ended up being head girl in our different grammar schools—Yorkshire grit. I am particularly proud to have presented my noble and learned friend with her honorary fellowship of the Royal College of Psychiatrists. Noble Lords will be grateful to my noble and learned friend for explaining why her membership had to cease in 2009. This of course included a period as a non-permanent judge at the Court of Final Appeal in Hong Kong, where I am sure her wisdom benefited their system greatly.
Noble Lords will also recall when, in September 2019, as President of the Supreme Court of the United Kingdom, the noble and learned Baroness, Lady Hale, found Boris Johnson’s prorogation of Parliament to be unlawful, thus terminating the suspension of Parliament.
I congratulate my noble and learned friend on her remarkable maiden speech, of no less interest given the time since her introduction. It is so fitting that it should be about children’s mental health. I also congratulate the noble Earl, Lord Russell, for speaking so honestly, openly and movingly about the subject of children’s mental health.
I declare my interests and experience. I trained as a child and family psychiatrist and later specialised in the psychiatry of learning disability. I have served as President of the Royal College of Psychiatrists. His Majesty’s Government has just published my report My Heart Breaks—Solitary Confinement in Hospital Has No Therapeutic Benefit for People with a Learning Disability and Autistic People. We will be debating this in the topical debate to follow. I have also devoted several years to addressing child protection in families and institutions, and to considering the long-term mental health consequences of child abuse.
Why is this all so important? Childhood is a period of extraordinary potential. If we get it right, we are investing in the whole of society’s future. Pregnancy and the first five years of a child’s life are the time when the foundations of healthy development are laid. Our relationship patterns are formed in the first few years of our lives, which also impacts on our future mental health. We know that adverse childhood experiences—ACEs—are key predictors of poor physical and mental health across the lifespan, and that poverty increases the risk that ACEs will occur during childhood. Half of all mental health problems present the first time before the age of 14, which is why prevention and population health really matter.
There are rising rates of referral to mental health services. These services are overwhelmed. Social care and school staff are feeling overstretched. We know that burnout is higher in those who work with children. There are rising rates of self-harm and suicide, particularly in teenage girls. Families are struggling with the cost of living crisis. To understand the current state of children’s mental health, I suggest we need to look at their relational and physical environments. Let us think about the post-pandemic world that children are growing up in right now. What is it like for them at home, at school, online, in their local communities and in the wider world?
Thinking about a child’s home environment, we need to acknowledge parents’ own significant social and mental health needs. Many are anxious and stressed; they are worried about money, their jobs, their families and the world. But when parents feel calm, safe and connected, their emotional availability to their children increases. This enables them to listen to their children and recognise their needs and helps them develop their emotional resilience and mental health for life. Let us not underestimate the power of accompanying parents in the tough and important journey of parenthood.
Thinking about a child’s school environment, we need to develop a culture of nurture as the foundation for learning. Nurture means creating a safe environment in which all behaviours are understood as a communication of underlying needs. When we realise this, we can transform a child’s experience in school and find ways of unlocking their love of learning and forming friendships.
Thinking of a child’s online environment, we see that it is one of the biggest current dangers to a child’s mental health. The Online Safety Act will help, but it requires society to support parents and schools in making a radical change to the current status quo. Children’s friendships and the social media environment in which they meet have a toxic potential, with some children never able to switch off. The physical environment, including housing, school and transport, may all contribute to our mental health, and we often overlook chemical factors—I am thinking about a healthy diet and reducing the impact of pollution and climate change.
We need to invest time and resources in building a population health approach that addresses the huge impact of health inequalities and the social determinants of health on the mental health of children. This requires a local, skilled workforce in population and public health too. We need an attachment, family-based approach that supports early relationships and secure attachments between parents and their babies. We need universally available family hubs and local community settings where parents can meet and share the ups and downs of family life and relationships.
We need early diagnosis for autism. Too many authorities are delaying assessment of autism at the moment. It is a mistake. It is not cost-effective. We need a skilled, supported and well-paid workforce for children, including early years childcare workers, midwives and health visitors, pre-school, primary school and secondary school teachers—all the practitioners who support children’s health and development in our communities and education settings. I agree with the noble Earl that we need more psychotherapy and more family therapy.
Focus on waiting lists for treatment misses the point. I suggest that we need less focus on mental health problems and more on emotional intelligence and resilience; more on understanding that it is normal to have strong feelings of sadness, grief and anger; more in relation to life and being human; and perhaps less focus on isolation and loneliness and more focus on human connection. A child’s emotional well-being and mental health cannot be considered, however, in isolation from their family’s health and well-being, and support for parents’ mental health must also be prioritised.
For those with milder problems, respectful, relational, family, school and community-based care is more effective than medicalising individuals. Mental health needs in schools can make a huge difference, and they should be there in every school. There are some excellent school-based initiatives. For example, nurture groups and whole-school nurture programmes are being planned across Surrey next year. The charity Place2Be offers one-to-one therapies in several hundred primary schools. I declare an interest in that feelings groups in mainstream primary schools in South Yorkshire and in special schools are transforming children’s lives, using resources provided by Books Beyond Words, a charity that I founded and chair.
CAMH services are needed to help children who are more seriously unwell. There is a move away from in-patient services to services being able to offer intensive community treatment, which I welcome. They need to offer long-term continuity of care, working closely with primary care and all agencies, and to support children at home or close to home. If required, in-patient admissions should be short, focused and timely to help prevent any problems developing further.
I have been told about a young teenage girl, whom I shall call Emma. She started struggling with her mental health during her transition to secondary school; such a transition is a very difficult time. Her way of coping with difficult feelings was to stop eating. She lost weight rapidly. Despite attempts to treat her at home, she was admitted to a psychiatric ward against her will for refeeding. On the ward, she developed self-harming behaviours, in part influenced by her peers’ self-harming behaviours around her. She was then diagnosed as autistic; it was a late diagnosis.
After five months, Emma’s weight improved and an intensive community team agreed to support her within the hospital, including in a small school and a therapy group as well as during her transition back to the community. The community team supported her parents in their fight for her place at school to be restored. She has developed hobbies again and the whole trajectory of her life has been altered. Teams such as this, which can help children and young people with complex needs to recover, must be able to work in a thoughtful and flexible way. It takes commitment and perseverance from the team members, who need to provide powerful advocacy for both the child or young people and their family. Could more have been done to keep Emma at home?
In my work looking at the reasons for people with learning disabilities and autistic people being detained in long-term segregation and the reasons for delayed discharges, risk aversion in the community seemed to be a key factor. At a round table yesterday, Dr Mezzina, a leading psychiatrist in the acclaimed mental health services in Trieste, Italy, challenged our concept of risk and suggested that institutionalisation is the main risk in mental health services. He questioned why we admit so many children and young people and why we do not have an open-door policy.
What is the way forward? A number of key initiatives would make a difference, including investing in early years services, developing support hubs for young families and schools-based interventions for at-risk individuals. We also need a robust workforce plan to address serious recruitment and retention issues; that workforce must have competencies in working with children and young people with learning disabilities and autistic children.
This Monday was World Children’s Day. The United Nations annual day of action for children, by children, it marks the adoption of the Convention on the Rights of the Child in 1989 and attends to the social determinants of health and well-being, including poverty. Let us look forward to the day when every child can have a happy childhood, and let us remember that there is no health without mental health.
Mental Health Act 1983
Baroness Hollins Excerpts(1 year, 7 months ago)
Lords ChamberRead Full debate Read Hansard Text Watch Debate Read Debate Ministerial Extracts
Lord Markham (Con)
I thank my noble friend for her question and for her work on this. The advanced choice documents are a perfect example, like a birth plan, of where people can put in place what their hopes are for the future. There are good examples at King’s College and at South London and Maudsley of what they are doing in this direction, and I am really keen to learn from those and expand them further. I am also keen to invite all the participants to a round table that Mental Health Minister Caulfield has agreed as well, where we can really talk about the action that we can take on the ground to implement as many things as we can to rectify the problems in this space.
Baroness Hollins (CB)
My Lords, 40 years ago, as a young consultant psychiatrist, I argued against the inclusion of learning disabilities and autism in the 1983 Act—it is out of date; these are not mental disorders. Does the Minister agree that it is time to take this Bill forward seriously?
Lord Markham (Con)
We are all agreed on the intent behind what we were trying to do with the Bill. On learning difficulties and autism, the most important thing we are trying to do is to make sure that the CQC, within 48 hours of a person being put into segregation, is investigating and doing an independent review on whether that is the best place for them. Like the noble Baroness, I share the feeling—we all think it—that it is much better that they are treated in the community, where they can be.
Autism: In-patient Care in Mental Health Hospitals
Baroness Hollins Excerpts(1 year, 7 months ago)
Lords ChamberRead Full debate Read Hansard Text Watch Debate Read Debate Ministerial Extracts
Lord Markham (Con)
I and the whole House would agree with my noble friend that having the right people making the right assessments on the right place for those people to be treated is key to all this. We are rolling out training through the National Autism Trainer Programme, in which we have invested £20 million to ensure improvements in autistic diagnostic pathways and people’s capability to achieve them. We are now rolling out the Oliver McGowan training to over 1 million people and looking at rolling out stage 2. However, I agree with her that these actions are vital.
Baroness Hollins (CB)
My Lords, the tragedy is that so many admissions are due to failings in adult social care. Mencap’s analysis of the latest NHS Digital statistics shows that only 45% of ICSs have met the adult in-patient rate promised by March 2020 and that 26% of ICSs are going in the wrong direction. Can the Minister update the House on future plans for building the right support after March 2024? In the absence of mental health and adult social care Bills in the gracious Speech, what plans are there to fully implement the recommendations in my report, which he kindly mentioned, published by the Department of Health on 8 November? So many of those recommendations were dependent on a code of practice to the current Mental Health Act being reopened.
King’s Speech
Baroness Hollins Excerpts(1 year, 8 months ago)
Lords ChamberRead Full debate Read Hansard Text Watch Debate Read Debate Ministerial Extracts
Baroness Hollins (CB)
My Lords, I will focus my response to the gracious Speech on mental health, learning disability and autism. I remind the House that I have autistic family members and have had a long career as a psychiatrist.
The recent Royal College of Psychiatrists report Infant and Early Childhood Mental Health: The Case for Action urgently draws to our attention that children under five in the United Kingdom are at risk of suffering from lifelong mental health conditions that could be prevented with the right support and that 50% of mental health conditions arise before the age of 14. Prevention and early intervention are essential, and the truth is that every family in the land is affected in one way or another.
For people of all ages who develop mental illness, the right health and social care must be provided within the right legislative framework. I was a member of the Joint Committee that reported on the urgently needed Draft Mental Health Bill in January. A government response is still awaited. The absence of a mental health Bill will affect so many families.
Last year, 50,000 people—I do not apologise for repeating that: 50,000 people—were detained in hospital under mental health legislation, including more than 2,000 people with a learning disability and autistic people, who were often detained without any therapeutic benefit. Years have been spent working on legislative reform, beginning with the 2018 independent review chaired by Professor Sir Simon Wessely, which was commissioned in part because of rising rates of detention under the Act. New legislation is needed to promote the least restrictive practices and to prioritise good mental health care at home. A key element of the draft Bill was to remove learning disability and autism as reason enough to be detained under Section 3. We are no longer a society that sees a learning disability and/or autism as a problem to be treated or fixed, and our legislation must reflect this change.
We need to see more effective progress against the target in the NHS long-term plan to close half of in-patient beds by March next year for people with learning disabilities and autism. Mencap’s analysis suggests that, at the current rate, this target would not be hit until 2028. Although learning disability admissions and discharges are reducing, the detention of people with autism is going up, which may be due to better awareness and recognition of autism.
We must not lose momentum; it is urgent to reform adult social care and the Mental Health Act. The Government’s building the right support action plan made it abundantly clear that reforming the Mental Health Act was key to reducing the number of autistic people and people with learning disabilities being inappropriately detained in psychiatric hospitals. How do the Government now expect to meet the objectives of the action plan, if the mental health Bill has been shelved?
At the request of the Secretary of State, in 2019 I agreed to chair an oversight panel on long-term segregation for people with a learning disability and autistic people. We finished our work in March this year—I say “finished”, but the work is not finished. There are still about 115 people detained in long-term segregation in in-patient mental health care. Yesterday, a Written Ministerial Statement was published about my report, and I am grateful to the Minister for tabling it. My report is entitled My Heart Breaks—Solitary Confinement in Hospital Has No Therapeutic Benefit for People With a Learning Disability and Autistic People. My letter to the Secretary of State for Health and Social Care and Minister Caulfield’s response were published alongside my report.
Our task was to oversee and report on the effectiveness of a Department of Health programme of independently chaired care, education and treatment reviews. The reviews were for people with learning disabilities and/or autistic people who have been detained in long-term segregation under mental health legislation. We found that it was often social care failings and inadequacies in community mental health that led to admissions. Our recommendations are wide ranging. We suggested that long-term segregation should be named “solitary confinement”, hence the use of that term in the title of my report; that it should be notifiable, which requires changes to CQC regulations; that it should become a never event for children and young people; and that it should be severely curtailed for adults, with stringent standards for accommodation and care. This would require changes to the code of practice to the Mental Health Act, but the urgent changes needed are unlikely to be considered until His Majesty’s Government bring forward a new mental health Bill or at least agree to review the code of practice.
Where is this Government’s commitment to improving the nation’s mental health? The omission of a new mental health Bill is particularly poignant in circumstances where legislation is needed to protect some of the people in the most vulnerable circumstances and where it is being repeatedly sidelined. The strapline of the Royal College of Psychiatrists is:
“No health without public mental health”.
I have tabled a Private Member’s Bill—although I have not seen the result of the ballot—to address some of the recommendations in the oversight panel report, in lieu of a mental health Bill in the Government’s programme of work. If I am unsuccessful, I hope that a Member in the other place will be willing to pick it up. We need urgent clarity on the future of social care reform and a commitment to a funded national workforce plan. Workforce pressures, a cost of living crisis, the Covid-19 pandemic and escalating waiting times are increasing the demand for mental health support. There has never been a more urgent time to reform mental health care.
The Minister began his speech today by saying that mental health and parity of esteem with physical health are priorities. This needs to include public mental health as well. I see no sign of that commitment. I hope that the Minister will at least commit to looking at the code of practice for the Mental Health Act so that some urgent changes can be implemented, including some of the recommendations from my report.
Adult Social Care (Adult Social Care Committee Report)
Baroness Hollins Excerpts(1 year, 8 months ago)
Lords ChamberRead Full debate Read Hansard Text Watch Debate Read Debate Ministerial Extracts
Baroness Hollins (CB)
My Lords, I welcome this excellent report from the Adult Social Care Committee. I congratulate the chair and the members; I would have loved to be one. I declare my relevant registered interests: I manage a family member’s direct payment and I am a director of a not-for-profit support organisation. I will not have time to give examples from my professional experience or my experience as a family carer today.
The committee said that social care is often “invisible”, but the report draws attention to what good care looks like, and it deserves to be widely read. Some groups are more overlooked than others. I will focus my remarks on the social care needs of working-age adults with a learning disability. In 2021-22, the King’s Fund found that 69% of social care expenditure for those aged 18 to 64 was on learning disability support. The Health Foundation’s recent analysis calls for a staggering £18.4 billion to meet demand in the next 10 years.
The sheer scale of underfunding that the system faces has a direct impact on the lives of people in need of social care. Cutting an hour here may mean that a person with a learning disability cannot meet their family or friends for lunch. Cutting an hour there may mean that a young person with a learning disability has no choice but to go to bed at eight o’clock on Saturday night. People rely on social care to access ordinary life opportunities, to live the “gloriously ordinary life” envisaged in the report and to become part of their local community—not simply to survive but to live and thrive in meaningful relationships with other people, and to live a life of their choice, as the noble Lord, Lord Bradley, said, rather than one in which a social worker decides how Care Act-assessed needs will be met by a direct payment. Does the Minister agree with me that that is not the spirit of the Care Act?
I want to mention David Towell, whose work with colleagues at the King’s Fund in 1980 kickstarted the ordinary life movement. Their work was a response to successive scandals and inquiries which exposed cruelty and neglect for many of the 50,000 people with learning disabilities then living in long-stay hospitals. They wanted to provide an alternative vision and model of care. Dr Towell’s book, An Ordinary Life in Practice, was published in 1988. In it he said:
“We want to see people with learning disabilities ‘in the mainstream of life, living in ordinary houses and ordinary streets, with the same range of choices as any citizen, and mixing as equals with the other members … of their own community’”.
This philosophy went on to inform many initiatives, including the 2001 Valuing People White Paper and its principles of rights, independence, choice and inclusion. These values were strongly spelled out in the United Nations Convention on the Rights of Persons with Disabilities, which we ratified in 2009.
The report highlights some wonderful initiatives, such as the Wigan Deal and Think Local Act Personal, which genuinely understand coproduction. But the social care system struggles to have the aspiration of an ordinary life any more because of the systemic issues outlined in the report and the urgent need for reform and culture change. This means learning to listen, particularly to the most ignored and marginalised communities, where the path to tackling injustice is that much higher and more difficult. The true state of social care requires pausing to look deeply at the sector and identify what is working and what is not. A key part of that is looking at the issues facing the workforce. Skills for Care estimates that there are more than 150,000 vacancies in the social care sector, and I welcome the committee’s recommendation for
“a comprehensive long-term national workforce and skills plan for adult social care”.
Without this, how could the significant issues of recruitment and retention be solved?
Roles in social care are highly skilled and vocational. Pay rates and training have fallen behind other sectors, but look at how social care has become a valued profession in Germany. We could transform it if we wanted to. In this country, the invisibility of care as a valued profession, compared with similar roles in the NHS, is one significant reason why people cannot stay in the job they love. The Care Act sets out a good legislative framework, but its spirit is not being adhered to. An audit cycle needs to be used effectively in adult social care: implement, review and change. This is the only way to ensure that lasting and meaningful change can take place. Legislation is just the start. I fear that, without political will to tackle these thorny issues, social care will remain invisible and broken. Remember that better lives lead to better health.
Sodium Valproate
Baroness Hollins Excerpts(2 years, 1 month ago)
Lords ChamberRead Full debate Read Hansard Text Watch Debate Read Debate Ministerial Extracts
Lord Markham (Con)
My understanding from speaking to Minister Caulfield on exactly this subject this morning is that she has recently spoken to the Patient Safety Commissioner, who is happy that she has the resource that she now requires to do this part of the study.
Baroness Hollins (CB)
My Lords, I note that the damage caused by sodium valproate happens during the first trimester, when many women do not realise they are pregnant for a while, and, despite attempts to plan pregnancy, many pregnancies are unplanned. It is one thing to say that it is the woman’s knowledge, understanding and consent, but what about the long-term care of children who are born with damage caused by sodium valproate? What measures are being taken to attend particularly to the needs of this group?
Lord Markham (Con)
The noble Baroness is correct that unfortunately there will always be some cases. Dr Charlie Fairhurst has been advising the Government on how best to create the care pathways so we can make sure that we are catering for the children in this scenario. How it manifests itself, as I am sure the noble Baroness understands, is in things such as increased autism or cystic fibrosis, for which we have existing patient pathways for treatment. We must make sure that these children can get quick and easy access to those treatment pathways.
Draft Mental Health Bill
Baroness Hollins Excerpts(3 years ago)
Lords ChamberRead Full debate Read Hansard Text Read Debate Ministerial Extracts
Lord Kamall (Con)
When I was having initial discussions on the various parts of the Bill, children and young people’s mental health clearly came up. The statistics are staggering. Some 420,000 children and young people were treated through NHS-commissioned mental health services in 2021. That is an increase of 95,000 in just a few years. That is still without us being aware of everyone who needs access to the system, or young people and their parents and families being aware of what support is available.
We are continuing to increase investment into mental health services by at least £2.3 billion a year by 2023-24, as set out in the NHS Long Term Plan. There is also the extra money in response to the pandemic, which saw extra demand. We have 287 mental health support teams in place in around 4,700 schools and colleges across the country but, once again, more needs to be done. It is one of those issues where demand outstrips supply.
We now have mental health support teams covering 26% of the country a year earlier than planned, but we hope to increase this progressively over the years so that as many schools as possible are covered. We have delivered 7 million well-being for education recovery programmes. We understand the tensions and workforce issues that will inevitably arise. The Health Education England review and the Government’s strategic review are considering all the changes in healthcare overall; all the technologies and ways of delivering services; and the change from secondary to primary and down to the community. We are working out in the response what workforce we need for each of those changes.
Baroness Hollins (CB)
My Lords, the average stay for people with learning disabilities and autistic people detained under the Act is five and a half years and, shockingly, many people are criminalised during their admission, making their discharge even more difficult. Although removing learning disability and autism from the Act is clearly the right thing to do, does the Minister agree that, unless there is some improvement in the care and support provided in the community to avoid those admissions in the first place, this could put people at risk? That is a concern in the wider community at the moment. We should take them out, but how do we look after people better?
Lord Kamall (Con)
I start by paying tribute to all the work the noble Baroness has done in this area, and for educating me more on this issue when I was a relatively new Minister. All I can say at this stage is that patients who have a co-occurring mental illness as well as a learning disability or autism may well be detained under the Act, but we want to make sure that there is support in the community. This is one of the big debates we have seen on a number of issues—for example, on social care. How much of social care will be in homes and how much will be in the community? Does technology improve that? Does constant online communications technology, sensors and the ability to speak to somebody online almost immediately change that equation? A lot of that will be discussed as we debate the Bill and by the experts who, we hope, will be on the pre-legislative scrutiny committee.
Down Syndrome Bill
Baroness Hollins ExcerptsFriday 1st April 2022
(3 years, 3 months ago)
Lords ChamberRead Full debate Down Syndrome Act 2022 View all Down Syndrome Act 2022 Debates Read Hansard Text Read Debate Ministerial Extracts Amendment Paper: Public Bill Committee Amendments as at 26 January 2022 - (26 Jan 2022)
Baroness Hollins (CB)
My Lords, I beg to move that the Bill do now pass. I thank all those who have worked on the Down Syndrome Bill to get it to this point, including Dr Liam Fox for drafting and steering it through the other place with cross-party support. I note that many of the Members of Parliament who spoke in that debate talked about their own constituents with Down syndrome, which is an explanation of why the Bill had quite so much support. Many members of the National Down Syndrome Policy Group are in the Public Gallery today and I extend a warm welcome to them. I thank Ministers and officials for supporting the Bill and those across the House, including the Opposition Front Benches, who have engaged in debate and, in particular, for the constructive spirit in which concerns were raised. I hope that those who had concerns have been reassured.
I believe that this Bill will increase awareness and improve access to services for people with Down syndrome. It is my hope that the Down Syndrome Act will open up a wider conversation on how to improve public services for people with other chromosomal disorders or disabilities, as well as all people living with learning disabilities. To this end, I am considering reviving my previous Private Member’s Bill, which would require the Secretary of State to undertake a public consultation to review the provision of services—including health and care, but also employment and housing—for all adults with learning disabilities. Perhaps the time is right to take things a little further and review the impact of recent and forthcoming legislative and policy developments. This includes the Down Syndrome Act, the Oliver McGowan mandatory training in learning disability and autism, the inclusion of an executive lead for learning disability and autism on integrated care boards, the planned integration of health and social care and building the right support action plan, among others.
When this Bill gains Royal Assent, in some ways, the real work begins with the process of creating the guidance. This is the time when all stakeholders will need to pull together and heal any divisions that have occurred.
The Parliamentary Under-Secretary of State, Department of Health and Social Care (Lord Kamall) (Con)
My Lords, I begin by extending my congratulations to the noble Baroness, Lady Hollins. I am grateful to the noble Baroness for steering the Bill to this point. I also extend a warm welcome to those who were in favour of this Bill, some of whom are in the Public Gallery. I offer my thanks to the right honourable Member for North Somerset, Dr Liam Fox, who introduced this Bill in the other place. I also want to thank everyone else who has been involved in developing this important piece of legislation.
I know that a number of concerns have been raised, and I welcomed the scrutiny of the Bill two weeks ago at Second Reading. The Government recognised some of the points that were made. Noble Lords raised important matters about the risk of discrimination and widening inequalities, as well as how the proposed guidance could be developed, scrutinised and implemented in a fair and inclusive way. We have listened closely to these concerns, and I hope to reassure noble Lords on a few points so they can be confident in their support of the Bill and the impact it will have at this stage.
The guidance is about making clearer what steps could be taken by relevant authorities to meet the unique needs of people with Down syndrome. The Bill does not remove the duties under the Equality Act 2010 for relevant authorities to assess all the needs of people to whom they provide support. Our assessment is that, to prioritise funding and resources for people with Down syndrome above other groups without proper assessment of people’s needs would be considered unlawful.
The Government will consult with a broad set of stakeholders in developing the guidance, including those with other conditions. I want to be clear that people with lived experience will be at the heart of this at each phase of its development. We will strongly encourage and support people with other genetic conditions, disabilities and protected characteristics, and their advocates, to engage with this process. It is right that we support legislation that will improve life outcomes, reduce inequalities and build a fairer society.
Baroness Hollins (CB)
My Lords, I want to reassure noble Lords that I and others involved in this legislation, including seeing it through the parliamentary process, will do all we can to ensure that the process is as inclusive as possible. I know from experience that lived experience must be at the heart and soul of the creation of the guidance, and I welcome the reassurances given by the Minister here and the Minister in the other place on this. It has been a pleasure and an honour to sponsor this Down Syndrome Bill through your Lordships’ House.
Down Syndrome Bill
Baroness Hollins ExcerptsFriday 18th March 2022
(3 years, 3 months ago)
Lords ChamberRead Full debate Down Syndrome Act 2022 View all Down Syndrome Act 2022 Debates Read Hansard Text Read Debate Ministerial Extracts Amendment Paper: Public Bill Committee Amendments as at 26 January 2022 - (26 Jan 2022)
Baroness Hollins (CB)
My Lords, I thank Mencap, Learning Disability England, the Down’s Syndrome Association and the National Down Syndrome Policy Group, among others, for their engagement with me in discussion about this Bill, including many who identify as having Down’s syndrome, their families and friends. I welcome those who have come in person to listen today, including the right honourable Member, Dr Liam Fox MP, who drafted the Bill so skilfully and steered it through the other place.
Like Dr Fox, I began my medical career as a GP, but I then went on to become a psychiatrist. I declare an interest: my adult son has a learning disability and he has many friends who have Down’s syndrome. I remind the House that most of my medical career as a psychiatrist involved my working directly with people with learning disabilities, including people of all ages with Down’s syndrome. I sometimes say that the most important thing I have ever done is to keep asking the question, “What about people with learning disabilities?” The thing is, unless you know somebody with a learning disability, it probably would not occur to you to ask that question. It is so hard to keep this community of people in mind. We saw it during the pandemic on our TV screens and in debate in Parliament. Care was synonymous with care homes for older people. The protection of people with a learning disability living in the community and of people with Down’s syndrome, who were eventually shown to be in very highest risk category for Covid-19, were largely overlooked.
A few questions and challenges have been raised about the Down Syndrome Bill, and it is important that they are aired. However, I also want to instil a spirit of hope in our debate today. My mentor, Professor Joan Bicknell, who sadly died a few years ago, taught me the art of holding in mind where we want to get to. I will respond to some of the concerns that have been brought to my attention and will consider them in the context of how children and adults with Down’s syndrome, and other people with learning disabilities, are currently living.
The Down Syndrome Bill has passed all its stages in the other place and I am very pleased that I was asked to help steer it through this House. It will require the Government to publish guidance on the specific needs of people with Down’s syndrome and how to meet them, and indeed to lay the guidance before Parliament. The relevant public authorities providing health, education and social care would then have to give due regard to this guidance in carrying out their functions under existing legislation, including the Care Act 2014 and Equality Act 2010. The Bill focuses on those with Down’s syndrome as one of the most diagnosed chromosomal disorders associated with a learning disability in England. There are over 40,000 people living with Down’s syndrome, most if not all of whom have some degree of learning disability.
Some are concerned that naming a Bill after a chromosomal condition is taking things back a few decades to a time when the medical model predominated, and that a diagnosis of Down’s syndrome on its own does not tell us anything about the extent of a person’s learning disability or other associated conditions that an individual might experience. A diagnosis is important to parents, who want to know why this child is different from the one they were expecting—and, for different reasons, a diagnosis is important to health and care professionals. Of course, it is important that any diagnosis does not define the person.
Implementation of the guidance must focus on the people behind the diagnosis, but a diagnosis does provide a framework to understand the common health needs associated with a specific disorder. It is important for health and care professionals supporting people to know and recognise the co-morbid health problems that are either specifically associated with or occur more frequently in people with Down’s syndrome. These include cataracts, hearing loss, obstructive sleep apnoea, low thyroid function, increased risk of leukaemia, congenital heart defects and early Alzheimer’s disease. When I was a young doctor, I remember children with congenital heart defects who were not treated because they had Down’s syndrome; a failure to intervene reduced their life expectancy and, often, their quality of life. A friend of my son had a heart attack and died before Christmas aged just 41—such a loss.
When there is a recognisable characteristic, such as the facial features that make Down’s syndrome recognisable, two problems may occur. The first is that any behavioural changes or health complaints may simply be attributed to the already identified condition. There is the tummy ache caused by a peptic ulcer that is blamed on Down’s syndrome rather than being investigated—this is called “diagnostic overshadowing”. The second is that people with Down’s syndrome are stereotyped as being always happy, docile, eternal children and so on. As Caroline Boudet put it in the Huffington Post in 2017:
“When you have Down syndrome, the first disability you have to face is the way people look at you. It’s based on received wisdom, society conveys misleading information about this extra chromosome and what it is supposed to cause. Each of us has prejudice in mind, this shows no ill-will but just a lack of knowledge”.
The majority of people with learning disabilities do not have a known cause; they and their families do not know the answer to the question “Why?”, just as in my son’s case. Their diagnosis is learning disability of unknown aetiology. Some people have a different genetic cause from Down’s syndrome, and some acquire a learning disability in the perinatal period. Their learning disability may not be recognised as quickly as that of people with Down’s syndrome; it may be their speech or behaviour that, as it were, gives them away, however hard they try to mask the differences to be accepted for who they are.
Let us look at another challenge: that a Bill named after a condition that can be diagnosed prenatally and which could be eliminated, as it reportedly has been in Iceland, means that the Bill is not needed, and may present a challenge to women’s reproductive rights. But whatever noble Lords think about abortion, some of the 40,000 people currently diagnosed with Down’s syndrome will be around for 70 or more years. Life expectancy is getting longer. Even if no more babies were born with Down’s syndrome, every one of those 40,000 deserves a better deal than they are getting now. The Bill is simply about helping those born with Down’s syndrome to have their lives valued the same as those born without it, and to have their strengths acknowledged and their difficulties supported through an improved understanding of how Down’s syndrome can affect people and families.
The timing of this Bill complements proposals in other pieces of legislation currently being debated within Parliament. I welcome the acceptance by the Minister during debate in the other place of having a named person within each integrated care board to be accountable for the implementation of the guidance on the Down Syndrome Act. Her Majesty’s Government had already pledged in both the NHS Long Term Plan and the autism strategy that all integrated care boards will focus on autism and learning disabilities at the highest level; for example, by having a named executive lead for autism and learning disability. Just this week, the Minister in your Lordships’ House, the noble Baroness, Lady Penn, reconfirmed this commitment by saying,
“I confirm our intention that all integrated care boards should have a named learning disability and autism lead and that NHS England proposes to issue statutory guidance on this matter to assist integrated care boards. The Government are supportive of this approach and believe that learning disability and autism leads on every ICB would act as a voice for those with a learning disability and autism in commissioning decisions.”—[Official Report, 16/3/22; col. 396.]
The Minister also accepted my amendment to the Health and Care Bill, which puts mandatory training about learning disability and autism on the statute book. It is all happening this month. I believe that the passage of the Down Syndrome Bill through the other place last month and Her Majesty’s Government’s support for the Bill has assisted in getting both of these through.
I would like this Bill to go further and to include all people with learning disabilities. However, previous attempts to introduce Private Members’ Bills on learning disability have been unsuccessful, including the LB Bill and my own Learning Disabilities (Review of Services) Bill, which aimed to make provision for the Secretary of State to undertake a public consultation on the provision of comprehensive and integrated services for adults with learning disabilities. In his speech in Committee in the Commons on 26 January, Dr Liam Fox highlighted that, given the logistical difficulties in passing a Private Member’s Bill, a clear focus on one condition was needed to improve the chance of this legislation being passed. Supporting the Down Syndrome Bill is a step in the right direction and something that we can build on. In my view, it is an imperfect but pragmatic way forward and a good model for a PMB, and I believe that, if the Bill is welcomed in this House, it will indeed pass.
The Bill’s supporters expect it to set a precedent that will ultimately benefit the healthcare and support of everyone with a learning disability, not only those with Down’s syndrome. Dr Fox sees it as a bridgehead to open the door to better care and support for the whole community, but some in the wider learning disability community are worried that people with Down’s syndrome will get preferential treatment and that people with other diagnoses, despite having similar health and care needs, will be left even further behind. I ask for the noble Lord’s assurance that there will be transparency in the Bill’s implementation, specifically to ensure that resources allocated to support those with Down’s syndrome are not taken away from those currently supporting other people with learning disabilities.
We all know the financial pressures being experienced within adult social care. Many parents say the stress they experience is not about having somebody with a learning disability or with Down’s syndrome in the family; it is the constant battle with the authorities, whether over EHCPs, respite or something else. My current battle for my son is the cost of sleep-ins to sustain his independence.
It seems that it may be time for a new learning disability strategy, like the Valuing People White Paper I contributed to, with so many others, in 2001: something to tie together all the various pieces of ongoing work, including the soon-to-be-published Building the Right Support action plan, and in the light of the new integrated care systems, as well as the anticipated social care and Mental Health Act reforms. A new, overarching strategy could build on the provisions and benefits of the Bill for the wider learning disability community. I hope the Minister will be open to further discussions about the development of such a unifying strategy. Clarifying these concerns will ensure that the Bill is successful in its goal of improving the quality of life and health of people with Down’s syndrome, to raise awareness and foster inclusivity. There is such enthusiasm to get started on developing the guidance—it feels like the time is right.
In a spirit of hope, I agree with Dr Fox, who said,
“it is entirely possible that, when guidance is given and there is a named person on the integrated care board, the Bill’s provisions and the measures required to apply it would reasonably be applied to”—[Official Report, Commons, Down Syndrome Bill Committee, 26/1/22; col. 5.]
people with similar needs. As awareness of the care and support that people need increases, I hope more resources will be allocated. I beg to move.
The Deputy Speaker (Lord Faulkner of Worcester) (Lab)
I call the noble Baroness, Lady Stowell.
Baroness Hollins (CB)
My Lords, I thank all speakers today for such a stimulating and informed debate, and others who were unable to be present, including my noble friends Lord Crisp, Lady Watkins and Lady Campbell, and the right reverend Prelate the Bishop of Durham, who had hoped to speak. I also thank David Nuttall, the Department of Health and Social Care civil servant who leads for learning disability, for his advice and help in preparing for today, and the Minister for his assurances.
I hope to reassure the noble Baroness, Lady Bennett, that there is no intention or possibility of this Bill affecting women’s reproductive choices. The Bill gives authority to the Secretary of State to produce statutory guidance which will clarify existing frameworks and practices. It cannot be used to amend primary legislation, such as the Abortion Act. The noble Baroness also mentioned that the Down’s Syndrome Association was not involved in drafting this Private Member’s Bill. I have spoken to the chief executive of the association at some length. When I asked her about the Bill, Mrs Boys said it would be more divisive to stop the Bill than to let it pass, and that it would be more constructive to work alongside others to ensure this guidance is as effective as possible. She told me that she supports it.
If amendments are laid, the Bill will be killed. If there are no amendments, Third Reading will take place on 1 April. If the Bill does not pass, it will fall into oblivion—yet again, out of sight and out of mind. There will not be another Bill for learning disability to replace it. The desire for the perfect is so often the enemy of the good. People who know me well know that I am absolutely committed to empowering people to be fully involved—it is absolutely “Nothing about us without us”. Would it not have been good if somebody with Down’s syndrome could have stood here today to speak about it?
In the other place, there was a commitment to ensure co-production of the guidance. The co-production and co-delivery of training is embedded in the Oliver McGowan mandatory training amendment, which we have spoken about and which was approved just two days ago. I believe assurances from Ministers that the consultation on the development of the guidance will be fully inclusive.
The noble Lord, Lord Farmer, spoke about 22q deletion syndrome. I know that the Minister in the other place specifically acknowledged that people with similar needs as people with Down’s syndrome would also be considered in the guidance. I believe that the Bill is another step on the way to improving access to the health, care, education and housing that all people with Down’s syndrome are entitled to in their desire to live fully participating lives in our shared world.
The former US President Calvin Coolidge said:
“Nothing in the world can take the place of persistence.”
I commit to continuing my drive to see people with Down’s syndrome and all people with learning disabilities lead full and healthy lives—ordinary lives—in inclusive communities. I believe that the first step to increase awareness and support for person-centred care for people with learning disability is to talk about it. The discourse in Parliament itself on this Bill is part of the jigsaw. Noble Lords will know that this was my approach in raising the issue of mental health up the agenda— first, get it on to the agenda. I am an optimist. I beg to move.