Palliative and End-of-life Care: Funding
Baroness Hollins Excerpts(2 months, 2 weeks ago)
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Baroness Merron (Lab)
The noble Baroness is quite right to raise this, and I can give her that assurance. She raises the point about identification of people with specific needs. I am interested to see that there are some very good examples of local good practice—for example, in Dorset, where they have proactively gone out to identify who needs palliative and end-of-life care. By so doing, they have raised the percentage of the local population who should be receiving it. That is a model we will want to look at. With regard to those who have particular needs, as the noble Baroness describes, I think that model will be helpful too.
Baroness Hollins (CB)
My Lords, the Minister has rightly pointed to the growing need for excellent palliative care close to home, and I am glad of that, but I wonder whether she is aware of the Hospice UK report pointing to the number of redundancies occurring across the sector. In the context of the 2022 Act, which required the NHS to commission adequate NHS care, this seems to be rather urgent, not just to provide good care for people but to reduce the impact on the acute hospital sector of not providing palliative care.
Baroness Merron (Lab)
The noble Baroness is right in her observations, and we certainly recognise that times are difficult, particularly for many voluntary and charitable organisations including hospices, for example, due to the increased cost of living. We are working alongside key partners and NHS England to proactively engage with stakeholders, including the voluntary sector and independent hospices, because we want to understand the issues they face and to seek solutions to them.
Immunisation: Children
Baroness Hollins Excerpts(6 months, 2 weeks ago)
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Lord Markham (Con)
It really is about having the whole toolkit. Clearly, it is about making sure that we are using communications in 15 different languages. It is about the outreach groups and, particularly, the catch-up programmes. We have been doing one for 17 to 25 year-olds for polio and MMR. It is about all those strategies and the pop-up clinics, so that it is very easy to catch people in places that are convenient for them.
Baroness Hollins (CB)
Does the Minister agree that the anti-vax sentiment is a powerful deterrent with some of the misinformation on social media? Is there anything more that can be done to try to counter that misinformation?
NHS: Long-term Sustainability
Baroness Hollins Excerpts(7 months, 1 week ago)
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Baroness Hollins (CB)
My Lords, I qualified as a doctor 55 years ago next month, across the river at St Thomas’. Much has changed since then—some good, some bad. I applaud my noble friend Lord Patel, and I agreed with his powerful opening speech.
As well as personal suffering, there is huge economic cost when the nation becomes less healthy. As we have heard, there are more than 2.6 million working-age people out of the labour market due to long-term sickness, at huge cost to the Treasury, with additional welfare and healthcare support and lost tax revenue. Yes, the NHS needs more investment, but it is not just about that; it is about changing the health and social care offer, improving access and equality of access, and changing the balance between hospital care and care in the community.
Italy closed its public psychiatric hospitals successfully, investing in 24/7 community provision. The Royal College of Psychiatrists asked that the next Government commit to a new health infrastructure plan for mental health, with one aim of improving the therapeutic environment of mental health and learning disability and autism in-patient settings, but it also hopes for real investment and the expansion of psychological therapies in early intervention and in public mental health.
The impact of negative press about the NHS and about social care has an impact on the morale and mental health of staff and the confidence of patients. This affects staff retention. A recent survey of 3,154 doctors by the General Medical Council found that 13% of respondents said they were very likely to move abroad to practise medicine in the next 12 months. A further one in three said it is very likely that they will move abroad at some time. This points to four key areas for improving retention: workplace conditions, pay, career structures and the perceived ability of our healthcare system to meet patient care needs.
Healthcare is a different and more complex service than when the NHS was founded in 1948. Individualised medicine is here to stay. More treatments are available, some very sophisticated and expensive. There is more bureaucracy, and we live in a more litigious world. The demands and expectations of the public have increased.
I read with joy an NHS pamphlet from 1948 which outlined to the public what they could expect from the NHS and, importantly, what the NHS could expect from them. I will quote a few gems from it. In my first quote, do notice mention of mental health:
“You will … be entitled to all forms of treatment in general and special hospitals, whether as an in-patient or as an out-patient. These include, for instance, maternity care, sanatorium treatment, care of mental health, and all surgical operations”.
About dental care, it says:
“You need no application form. Just call, by appointment, on the dentist of your choice when you need him … All necessary fillings and dentures will be supplied without fee, but if you want anything specially expensive … you will pay the … cost yourself”.
On maternity services, it says:
“It will be the doctor’s responsibility, with a midwife, to give all proper care and (if he considers it necessary or is called in by the midwife) to be present at the confinement”.
How wonderful it sounds. Perhaps we need an NHS pamphlet for 2024, to relaunch a new contract between the public and the NHS about what can be expected on both sides. I suggest that, as well as maternity care, we should have palliative care added to the 2024 pamphlet.
Central to solving the problems facing the NHS will be transforming social care from a safety net for people in vulnerable circumstances to a relational system that enables people to flourish. The endless gatekeeping, signposting and managing demand within the NHS all contribute to the increased demand for and greater complexity of social care. The bureaucracy affects unpaid family carers too, as I know only too well. Kate Garraway recently said about her experience of being a carer:
“If I have any regrets, it’s every single minute that I didn’t spend holding his hand because I had to go and write an email, make a phone call, fight the system that should be there to catch you when you fall but feels when you’re going through it like it’s there to catch you out”.
We need long-term thinking, long-term funding and more consistency, so that everyone—staff and patients—knows what to expect.
Care needs to move away from glamorous, expensive, interventionist hospital care and spend more in the community. If this does not happen, more expensive hospitals will need to be built to manage people’s acute needs that could have been better prevented or better managed.
In-patient Mental Health Care: Learning Disabilities and Autism
Baroness Hollins Excerpts(11 months, 2 weeks ago)
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Baroness Hollins
To ask His Majesty’s Government what assessment they have made of progress towards achieving the target in the NHS Long Term Plan to reduce the number of people with learning disabilities and autism in in-patient mental health care by 50 per cent by March 2024, relative to 2015 levels.
Baroness Hollins (CB)
My Lords, this debate follows quickly on the heels of the topical debate about my report, My Heart Breaks, and the debate from the noble Earl, Lord Russell, on the state of children’s mental health a couple of weeks ago. This debate should be more optimistic than earlier ones, because it is about the Government’s flagship programme, Building the Right Support, which launched back in 2015, and their 2022 action plan. I declare an interest, as I have been asked to continue as a member of the action plan delivery board, which I previously attended as chair of the Independent Care (Education) and Treatment Reviews oversight panel.
I am grateful to all noble Lords who have signed up to speak and to the Minister for responding to all these debates, for writing to Members about issues raised and for arranging very helpful round tables for further discussion.
To give some background, in 2015, there were 2,905 people with a learning disability and/or autism in hospital. The target in the NHS long-term plan was for this number to be halved by March 2024. There has been a 30% reduction. Also, local commissioning systems were to have no more than 30 adult in-patients with a learning disability and/or autism per million of the adult population by the same date, but for some of the 42 ICSs, more people are now in hospital than were previously recorded. Recently, His Majesty’s Government have highlighted welcome progress in reducing the number of people with a learning disability in hospital. However, Mencap suggests that at the current rate of discharge it will be 2029 before the 2024 target is reached, and data shows that the number of autistic people without a learning disability has increased since 2015. So, what is the plan post March next year?
In August this year, 5,025 restrictive interventions were recorded among this group of people, 1,140 of which were used with children. That is physical, chemical and mechanical restraint and the use of solitary confinement, as described in my recent report. Lengths of stay are unacceptably high and much longer than for the general population. The average length of stay is now 5.2 years. NHS Digital data shows that 310 of the 2,035 people currently in hospital have been there for between five and 10 years, of whom 70% have a learning disability, and 360 have been detained for over 10 years, of whom 80% have a learning disability.
Let me tell noble Lords about Ash—not their real name. Ash was admitted to a psychiatric ward two years ago at the age of 14 and diagnosed with autism after admission. Ash can take joy and pleasure from activities but on the same day become very distressed. Ash is biologically female and, like so many autistic young people, has been identifying as transgender for the past two and a half years. In primary school, Ash was described as being shy, anxious and having low self-esteem. It was challenging for Ash to move to a large secondary school, with lots of transitions to manage —moving between classes, for example.
In primary school, there had been good support from teaching assistants, but Ash felt isolated in secondary school without this support and was bullied by peers in year 7 and overwhelmed by the challenges of travelling to and from school on the bus. Ash did not share this with their parents, finding it difficult to communicate the feelings they were experiencing, and the impact of Covid-19 restrictions led to more feelings of isolation and loneliness. Ash started to self-harm and made several attempts to end their life. After being reviewed in A&E and discharged with some community support, unfortunately Ash made a further serious attempt to end their life, was admitted to the psychiatric ward and has remained an in-patient since that time.
Ash continues to engage in regular head banging and does not want to engage in therapy. Understandably, Ash’s parents do not feel they can have Ash home, due to ongoing safety concerns and worries about the lack of support for them at home, despite asking for help in the past. The hospital says that it has been trying to find a new “placement” for Ash for at least 18 months—but calling it a placement may be part of the problem: it is a new home that Ash needs. Meanwhile, Ash is stuck on the ward and the uncertainty about their future just leads to further anxiety and more attempts to self-harm. One child too many is spending their teenage years on an adolescent ward, missing out on opportunities to develop independence during adolescence.
Could this admission have been prevented through earlier autism diagnosis, earlier recognition and support at school, and robust community mental health support from the start? Are current waiting lists for assessment setting the scene for more stories like Ash’s for years to come, and more long admissions to hospital? The action plan summarises several cross-agency commitments, as well as providing guidance for commissioners to help them to commission for people’s lives, not just to commission services for people to be fitted into.
Long-term hospitalisation is a result of failures in our social care system, in the flexibility of our community health responses and in our education system—which is too ready to exclude children with complex needs—and of a lack of suitable housing. It often follows traumatic experiences in a person’s life, such as the death of a close family member or being the victim of an assault. This debate allows us to question why the target has failed and, indeed, whether it was the right target in the first place. Is it the number of people in hospital that is the issue, or the purpose of the admission and the quality of assessment and treatment that they receive in hospital? I have consulted a few leaders in the learning disability world. One suggestion is that a better target would be based on equality. For example, the proportion of people in in-patient settings and their length of stay should be no higher than it is for the rest of the population.
The truth is that there has been insufficient focus on improving community support to prevent admission. The measure of success is not about what action has been taken or what has been spent; it is about people’s experiences. What is being done to address this? What investment is being made to pilot new ways of working in the community? Are evidence-based models from other countries being piloted in the UK and, if so, where?
There is significant concern that there has been a lack of focus on people providing direct support who are not part of any professional body and do not have necessary training and experience to support people in crisis. Too often, people in crisis with high support needs are supported by agency staff with minimal experience of supporting people with learning disabilities and autistic people. What is being done to improve the quality and suitability of support for people who need more specialist skills?
One central reason why the March deadline will not be met is the failure to tackle perverse incentives in the system. Social care is underfunded, and this is creating conditions in which people with a learning disability and autistic people cannot access the right support, and can then move quickly towards crisis. Very few integrated care systems have created safe spaces to avert crises, and avoid either criminalisation or hospitalisation.
My letter to the Secretary of State regarding my report set out the need for pooled budgets between health and social care providers. These are needed to break down the bureaucratic barriers that too often prevent discharge. The RedQuadrant report Building the Right Support: An Analysis of Funding Flows makes the same crucial point:
“Strong partnerships, pooled budgets, and joint commissioning arrangements significantly improve performance on achieving discharges for people”.
We are not short of evidence. The issues are clear, as are the solutions. Action and will are needed to bring about change. Some of that is cultural change: a willingness to include people who are different in our communities, and to go the extra mile to help them to stay at home. The financial cost would be less, and just think of the improvements in the quality of people’s lives. We need the change, and I very much hope the Minister will show us his will in concluding this debate and responding to the questions that I know noble Lords will ask. I beg to move.
Mental Health: Children and Young People
Baroness Hollins Excerpts(12 months ago)
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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.
Learning Disabilities and Autism: Solitary Confinement in Hospital
Baroness Hollins Excerpts(12 months ago)
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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 Act 1983
Baroness Hollins Excerpts(1 year ago)
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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 ago)
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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 ago)
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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, 1 month ago)
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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.