(1 week, 3 days ago)
Lords ChamberMy Lords, I refer the House to my interest as a vice-president of the National Autistic Society, a role I share with my good and dear friend, the noble Baroness, Lady Browning.
I welcome the Bill. It has been a long time coming, and I passionately hope that it will allow us to end once and for all the myth that autism is a mental health condition. Autism is most definitely not a mental health condition, and our failure to address this has meant decades when autistic people have been wrongly incarcerated, often in appalling and degrading conditions, and robbed of their human rights. More than 2,000 autistic people and people with a learning disability are in mental health hospitals in England, a point made by the noble Earl, Lord Howe, in his opening remarks. The National Autistic Society tells us that 68% of these people are autistic.
Some 93% of autistic people and people with a learning disability in mental health hospitals are detained under the Mental Health Act 1983. The average length of stay is five years, but for a great number of autistic people the detention lasts for decades. Professor Sir Simon Wessely’s review of the Mental Health Act in 2018 found that the experience of detention was often damaging and traumatic. The Bill includes measures to improve care and support for autistic people, reducing reliance on hospital-based care. That certainly is good and is welcomed.
However, there are aspects of the Bill that concern me, and I have had a chance to discuss them with my noble friend the Minister. I have been fortunate to have had a number of fruitful meetings and discussions with a team from the Autism Centre of Excellence at Cambridge and, as a result, they and I share some concerns. First, the Government have said:
“For those with a learning disability or autistic people, the act will be amended to place a limit of 28 days for which they can be detained unless they have a co-occurring mental health condition”.
My noble friend mentioned this in her opening remarks. I stress again that autism is not a mental health condition, but given that eight in 10 autistic people experience mental health issues, without the right safeguards there must be concern that the new provisions could simply lead to a continuation of the current intolerable situation. I hope my noble friend, who kindly met with me recently to discuss these matters, will seek to assuage my fears on that point.
The Government have also said:
“Police and prison cells will also no longer be used to place people experiencing a mental health crisis … Instead, patients will be supported to access a suitable healthcare facility that will better support their needs”.
The right reverend Prelate referred to this in her remarks. The Lampard Inquiry was set up to look at more than 2,000 deaths of people in in-patient mental health facilities, specifically in Essex, and it is believed that many of those who died were autistic. I say to my noble friend that it would be wrong to assume that simply switching the location where autistic people are detained is going to achieve a much better way of protecting them.
The Government have also said the reforms will
“introduce statutory care and treatment plans”.
I share the Cambridge centre’s belief that every autistic person who needs support should have access to a statutory plan to enable them to get the help they need. It should not take an autistic person falling into crisis and being detained in a mental health hospital for such support to be provided, as is often the case today. Autistic people who are at risk of falling into crisis should have a similar right to such plans to prevent in-patient detention becoming a risk in the first place.
A focus on prevention would be in line with Wes Streeting’s idea of reforms of the National Health Service. It is recognised that the current system does, in fact, have a range of provisions, legal rights and safeguards that should, in theory, have reduced the number of people detained in in-patient mental health services. But published statistics show us that this has not happened, with thousands of people still inappropriately detained, so I ask my noble friend to consider these concerns as the Bill passes through the House in Committee and so on.
There is a danger of allowing, even unintentionally, the creation of a critical gap between what happens at a policy and legislative level and what happens on the ground. Without reckoning with this gap and setting up measures to ensure that what is said by government turns into real action on the ground, these reforms will not change the decades-long scandal of thousands of autistic people being detained inappropriately. To do this will require clear measurement, consistent and regular accountability and the necessary funding to enable the National Health Service and other agencies to deliver the hoped-for change that we need from this Bill.
(1 year ago)
Lords ChamberMy Lords, I declare an interest as a vice-president of the National Autistic Society. I join my noble friend in thanking the noble Baroness, Lady Hollins, not only for securing this debate but for the commitment and dedication she and her colleagues have put into preparing the report; it is absolutely outstanding. It is a pleasure and an honour to follow my close collaborator on these matters, my noble friend Lady Browning.
“You must meet this young boy who has behavioural problems and is about to go to comprehensive school.” Those were the words of the head of a special school I visited a little while ago. The lad was autistic and, from time to time, had an emotional meltdown that could sometimes be violent and difficult to handle. His first words when I met him were, “You’ve heard I’ve got behavioural problems”. I said, “Yes, I know”. He said, “I’m, working hard to try and cope”. I said that was good. He added, “My brother is the same. He’s five and autistic. I’m helping my mum cope with him. You’ve heard I’m off to comprehensive school”. I wished him good luck. He said, “I’ve decided on my career. I’m going to become a High Court judge. If you come up before me, you’ll get a lenient sentence”.
The point is that the head told me later that this young lad and his family had worked very positively and hard to try to overcome the behavioural problems that he and they were enduring. With the right support and encouragement, that young man has a future. However, that is not so for many children and adults with autism who have been locked up in mental health hospitals, sometimes for years. More than 2,000 are being detained under existing mental health legislation. They are separated from their families, isolated and often held in locked rooms, with their human rights ignored. We in Britain should be ashamed of this injustice.
The Council of Europe is our bulwark in defending human rights across our continent, and I once had the honour of serving as a member of that body. The council has twice in recent years taken a strong stand against the detention of people in mental health institutions, and our Government endorsed that view. Some of us were encouraged when the Government pledged to reduce the number of people with learning disabilities and autism in mental health hospitals by 50% by March next year—my noble friend Lady Browning referred to what Mencap has said about that. That begs the question everyone is asking: why did the Government not include a new mental health Bill in the King’s Speech to put an end to this practice? Families of autistic people are devastated by that failure and are anguished for their children.
A young Japanese boy, Naoki Higashida, wrote a book, The Reason I Jump. In the book there are some 50-plus questions and answers from the point of view of someone who is autistic. Whenever I pick it up, I look at question 21, which was:
“Why don’t you do what you’re told to straight away?”.
This was his answer: “There are times when I can’t do what I want or what I have to. It doesn’t mean I don’t want to do it, I just can’t get it all together somehow. Even performing one straightforward task, I can’t get started as smoothly as you can, so I have to do three things. The first thing I do is I think about what I am going to do. Then I have to visualise how I’m going to do it. Thirdly, I have to encourage myself to get going. How smoothly I can do the job depends on how smoothly the process goes. There are bad times when I can’t even act as I want to. I act badly. And when my body is beyond control—I don’t mean I’m ill or anything like that—it is as if my body belongs to somebody else and I have zero control over it”.
That is an inside view from a young autistic boy. Imagine being autistic and going through this experience when being told to do something immediately, or being detained in solitary confinement in a mental health hospital and being told to do this by a person who perhaps does not understand how difficult it is for you to act to do something they have asked you to do immediately.
The noble Baroness, Lady Hollins, speaks for all of us in the title of the report she wrote, My Heart Breaks—Solitary Confinement in Hospital has no Therapeutic Benefit for People with a Learning Disability and Autistic People. The Minister is highly regarded on all sides of the House—that is genuinely felt by everyone here. All I can say to him is that only His Majesty’s Government have the power to make this change. I can think of no greater act in what is perhaps the last year of this Parliament than to pass legislation that would put an end to this wicked and evil practice.
(1 year ago)
Lords ChamberTo ask His Majesty’s Government what provisions they are making to reduce the number of autistic people confined to in-patient care in mental health hospitals.
My Lords, I beg leave to ask the Question standing in my name on the Order Paper and declare an interest as a vice-president of the National Autistic Society.
My Lords, this year we are investing £121 million in community support for autistic people and people with a learning disability. This will support reductions in the numbers of autistic in-patients in mental health hospitals in line with the NHS long-term plan commitments. To ensure that autistic people receive quality care in these settings, we are rolling out a National Autism Trainer Programme and have published guidance on sensory adaptations in health environments.
The King’s Speech was an opportunity for the Government to introduce the mental health Bill, ending the scandal of autistic people being locked up in mental health hospitals, sometimes for decades. By shelving the Bill, the Government have failed thousands of autistic people and their families, who are devastated that there continues to be no legal protection against unnecessary detentions; I believe that is an attack on their human rights. The Minister is well respected across this House as a caring and compassionate individual, but I must press him on this. Will he please explain why His Majesty’s Government do not see the Bill as a priority, and as an opportunity to end a most evil practice?
I thank the noble Lord for his kind words about me; I understand the situation. The Government are committed to implementing those changes and we are looking for opportunities to introduce them. I understand his disappointment that the Bill is not in the current programme of legislation. What I am committed to doing is making sure that as many features as possible from the Bill are implemented through action on the ground; the care and treatment reviews are a vital part of that today. Following the report from the noble Baroness, Lady Hollins, we are also making sure that we have regular CQC reviews over the next few years. We are delivering good action in this space, but I understand his feelings.
(1 year ago)
Lords ChamberMy Lords, I join others in saying that I appreciate greatly the tone in which the Minister introduced the debate. I very much regret that I cannot say the same thing about the grief he was required to articulate.
When thinking about what I should say today, I came across the following: “We make a living by what we get. We make a life by what we give”. Those words were spoken by Winston Churchill, and they are at the heart of what I want to say. The voluntary and charitable sector has been part of the British way of life for as long as I can remember. Giving makes us all feel good and contributes to building and strengthening our communities, but the future is looking bleak for many charitable organisations. A recent survey carried out by the National Council for Voluntary Organisations showed that some 85% of charities believe that the coming winter will be tougher than last year. Without more help, one in five charities could disappear, leaving people and communities at risk.
The NCVO statement revealed that over £16.8 billion of income for the charitable and voluntary sector comes from the Government and local government. However, these contracts are not uplifted each year to reflect the rising costs of delivering these vital services. Ahead of the Autumn Statement, the NCVO is asking the Government to ensure that contracts for services it provides, and direct grants to charities, are uplifted. Like the NCVO—and, I am sure, like many in this House—I endorse that.
Why is that so important? If nothing is done, people will not be able to access the vital services they need. I spent 20 years as a member of Gwent County Council before entering the House of Commons, where I served as chair of the Finance Committee. I saw first-hand how important public funding support was for local charitable initiatives. Unfortunately, all too often local council grant support was very short-term, covering one, two or a maximum of three years. I soon discovered that many local charities, having secured funding and employed staff, had, within a year, to use the staff as fundraisers in order to continue the service they were trying to provide. Public funding for charities is still too short-term; I strongly believe that five years is the minimum that will be required.
The contribution each of us makes as an individual is vital in building and strengthening communities, but, as the NCVO report has shown, the bedrock of income for many voluntary and charitable groups comes from local councils and government. More than that, the NCVO said that costs are increasing, income is falling and demand is increasing. In addition to the cost of living crisis, it now finds that there is a cost of giving crisis. For many, despite their resilience and ingenuity, the cost of giving crisis has created a melting pot of pressures as they continue to support their communities.
There is no doubt that the Covid pandemic left many voluntary and charitable organisations in a far worse position than we first thought. Now they are struggling while faced with falling income, increased costs and a growing demand for services. This cost of living crisis has hit very hard. Evidence of that can be seen in every supermarket. I am sure that I am not alone in this but, in recent months, when shopping I have noticed that the large crates at every exit, put there so that we can donate to local food banks, are now more often empty than full. In fact, there is hardly anything in there at all because people are feeling the pinch and cannot give as they did before.
This brings me back to a point I made earlier. In these circumstances, more government and local government financial support is necessary. I accept that many will say that public funding is already overstretched and is not a bottomless pit. I know that—we all know that—but, in these circumstances, the Government and local government will have to decide priorities. I passionately believe that increased financial support for contracts for and work done by the charitable sector should be a top priority for both the Government and local government.
Why do I feel this? As I said, I spent 20 years as a county councillor. I was a Member and Minister in the other place for nearly 16 years and I have been in this House for about 13 years. In that time, I have learned one important thing: no matter how good the Government and local government are at providing services, without the services provided by the voluntary sector, the quality of life of many people in our country would not be what it is today. Looking around the Chamber now, I suspect that many of us have at one time or another turned to the voluntary and charitable sectors for help or advice. We know how important their work is. Many of us are demonstrating it right now. Most of us in the Chamber are wearing poppies; each one bought provides help and financial support for one of the greatest charities in our country, the Royal British Legion.
The Government must ensure that contracts and grants for charities delivering services are uplifted to meet the costs of delivery. If this does not happen, people will not be able to access the vital services that they need. I sincerely hope that the Minister and the Government will be prepared to listen.
(1 year, 6 months ago)
Lords ChamberTo ask His Majesty’s Government what steps they are taking to ensure NHS targets for autism diagnosis are met.
My Lords, I beg leave to ask the Question standing in my name on the Order Paper, and I declare my interest as a vice-president of the National Autistic Society.
We recognise that not all areas are meeting the NICE recommended maximum of 13 weeks between a referral for an autism assessment and a first appointment. In 2022-23, we invested £2.5 million to test and improve autism diagnostic pathways. In 2023-24, there is a £4.2 million grant to improve services for autistic children and young people. In April, NHS England published a national framework and operational guidance to help the NHS and local authorities improve autism assessment services.
My Lords, by next year 190,000 patients are expected to be waiting for an autism diagnosis—it is already 130,000, and 67,000 of them have been waiting for more than a year. Research shows that there is a widening gap between the number of people who need to be seen and the number of staff available. In the last four years, we have managed to recruit just 19% more staff. The letter that the Minister helpfully sent us in April indicates that he is as concerned about this matter as any of us in this House. We appreciate that, but my question is simple: what is being done to recruit more staff?
I thank the noble Lord, both for his question and for his interest and work in this space. The House will know that this topic is quite close to my heart as well. It is an area of challenge. We have more demand than ever. We are committed to recruiting more staff. We have a recruitment target for next year of 27,000. Very promisingly—I hope I will have time to go into this in more detail later, or I will speak to the noble Lord afterwards—there is a pilot scheme in Bradford looking at children’s early years scoring and how that can be used as a precursor to screening and testing.
(1 year, 10 months ago)
Lords ChamberFirst, I thank my noble friend and all noble Lords who took part in the pre-legislative scrutiny committee. I think all noble Lords agree that what we are trying to do with the mental health Bill is a very good thing. We would like to bring it forward as soon as we can. From my side, I know that we are ready to go, but we are working with the parliamentary authorities to make sure that we can get the legislative time. We want to do it as soon as possible.
My Lords, due to the current mental health legislation, autistic people are being detained in hospitals not because they have a separate mental health issue but because they are autistic. Autism is not a mental health condition, but more than 2,000 autistic people are currently locked up. This is a stain on Britain’s reputation for defending human rights and a challenge for us to define the liberty and freedom of some of our most vulnerable citizens. So will the Minister ask his noble friend sitting on the Bench with him, the Government Chief Whip, for a debate in government time on this matter, so that the voices of some of these people, some of whom have been locked up for decades, can at last be heard?
I have some personal experience in this space, so I understand exactly what the noble Lord is saying. I think we all agree on its importance. We have a commitment to decrease the number of in-patients with learning disabilities and autism by 50%. It is something that every ICB must have a lead on, so that they can really tackle it, and I personally would be happy to meet the people the noble Lord mentioned to understand further.
(1 year, 10 months ago)
Lords ChamberIt is, as the noble Lord says, a statutory requirement that the local authorities are represented on the ICBs. In the last few months, I and other Ministers have met and had discussions with all the ICBs. Every ICB is asked to put up a few people. I have had the local authority representative there as one of only three or four people in the meeting—that is key to all of this. They have been critical participants. They are very involved, and it is vital that they remain so.
My Lords, the Government are to be congratulated on amending the Health and Care Act to ensure that responsibility for integrated care systems addresses the needs of children and young people under the age of 25. However, children with special educational needs or disabilities have lifelong problems. How will providers ensure that there will be integrated health and social care for disabled children and their families?
This is the whole point and the way that we are moving; the real decision-makers running their local areas should be the ICBs. They know their areas and the needs of the people—including people with special needs and learning disabilities—more than anyone. It is absolutely their responsibility to understand the needs in their areas and to ensure that they are provided for under the commissions.
(2 years, 8 months ago)
Lords ChamberMy Lords, when opening Second Reading in the other place, Dr Liam Fox said that the first question that people have tended to ask about this Private Member’s Bill is “Why?” Why this issue, and why now? He gave three key reasons. First, he said that there is the challenge faced by those of our fellow citizens who have Down’s syndrome and their families. The second reason concerned the intellectual development of a person with Down’s syndrome—an area, he said, where public perception tends to be inaccurate. Thirdly, he said the Bill was timely as the life expectancy of a person with Down’s syndrome is now perhaps 58 years, compared with just 13 years some time ago.
It is more than 50 years since I first became aware of the challenges facing a person with Down’s syndrome and their family. We had just moved house and one of our neighbours had a son, David, with Down’s syndrome. We became friends, and in the next few months my late wife, Jennifer, became involved as a volunteer member of the local Mencap group. She helped to organise weekly gatherings of parents and children at the Glengariff day centre near our home. At first, she thought these evenings were just an opportunity for parents to have a cup of tea and a gossip while she and others organised events for the children; but she soon discovered that, for the parents, this was a time to share experiences and problems and give mutual support, which was otherwise lacking—a much-needed moment away from what appeared to be the pressure they lived with trying to raise a child with Down’s syndrome. She would often tell me about the challenges this or that parent had in gaining education support, welfare support and, yes, understanding and tolerance from others, including other family members and neighbours.
I know friends who became frustrated having to justify seeking support for their son with Down’s syndrome. They had to wait until he was seven to get him statemented. I discovered even more when, as a local councillor, I took up cases of parents with these problems. I would go into County Hall only to be told, “Sorry, Councillor, we can’t do anything; he”—or she—“falls through the net.” But who created the net? We did—we local councils created them, we the Government did, and we in Parliament had a hand in it too.
Many of the challenges that parents faced 50 years ago, when I first became aware of these matters, remain today. My wife went on to help set up a local Gateway club, visiting sixth forms recruiting youngsters to join in the support. It was at Gateway that I met Pat and her mother and father. Pat was a bright and cheerful girl, her parents doted on her, and she was always immaculately dressed and turned out. But when her father was taken seriously ill and her mother had problems managing, she went into local authority residential care. What a mistake. We met Pat wandering alone in Cwmbran town centre looking lost and dishevelled. Pat did not know the difference between 5p and £5, yet she was left without care and support. We were shocked but, thankfully, within a week her father had recovered, and she was back at home. But the experience of what we witnessed remained with us. The system—in this case, the local council—had let a vulnerable person down. She, again, had fallen through the net.
It was no better with care in the community. Cathy, a friend’s daughter with Down’s syndrome, was encouraged to experience independent living. She was placed in a house with two elderly men—both had dementia. One person came in the morning to make sure there was some breakfast; a second person came in the middle of the day to make sure there was a midday meal; and a third person came in the evening to see there was an evening meal. That was not care in the community; that was neglect in the community. Cathy was rescued—and I believe that, rescued—by her family within a week. Again, the system had failed a vulnerable person.
Several years later—it was during the Islwyn by-election—I was knocking on doors, and I came across a family. A family of four young women who had Down’s syndrome and they lived together as a family with a house mother. Now, that is real care in the community; that is doing it the right way.
Liam Fox’s second reason concerned perception and, having spent 27 years working in newspapers and publishing, I can tell you that in my experience perception is more real than fact in what most people believe to be the case than what actually is the case. The wrong perception about Down’s syndrome can also feed ignorance, prejudice and stupidity.
I found that was the case, even with the National Health Service. Some years ago, I served as chair of the All-Party Parliamentary Group on Down Syndrome. I listened in shock to a mother who related her experience of ignorance. She was at the bedside of her young son who was recovering post-op from minor heart surgery. The child appeared distressed, and she became alarmed, and she called the nurse, and the nurse came and looked and told her, “Don’t worry, dear. He is Downs, and they do not feel pain.” Do not feel pain!
Our committee then went on to take further evidence from a young couple. The wife had just given birth to a child with Down’s syndrome, and they were not aware that this was going to happen so they were coming to terms and trying to work out how they would come together and work as a family, and in breezed a doctor. When they spoke about their concerns, and said they were not certain what to do, the doctor told them not to worry, to leave that one here and go home and have another one—ignorance, prejudice and sheer bloody stupidity, all rolled into one.
Finally, Liam Fox’s third reason for introducing this Bill was that it was timely and necessary, pointing out that, in his lifetime, life expectancy for people with Down’s syndrome had increased from 13 years to 58. Timely is right—right in that, no matter how long or how short out lifespan, all have the right to quality of life. Who in this Chamber would deny that? We want it for ourselves—we do. Do we not want it for our children? Of course, we do. This Bill is another step, another building-block, in ensuring a person with Down’s syndrome has just that: quality of life, a life lived to the full in dignity and respect, respect for their human rights. The human rights of a person with Down’s syndrome are no less important than yours or mine. Their lives deserve to be lived, respected, honoured, defended and yes, indeed, cherished by all of us.
(2 years, 8 months ago)
Lords ChamberMy Lords, it may be convenient for the House if I clarify the Government’s position on the amendment at this stage. I am grateful to the noble Baroness for bringing her amendment before the House today on the important matter of mandatory training on learning disability and autism for the health and social care workforce and I pay tribute to the work that she has done in this area.
The Government recognise that mandatory training on learning disability and autism will support the health and social care workforce to improve the quality of care and support provided to people with a learning disability and autistic people, thereby improving health and well-being outcomes. We remain committed to improving the lives of people with a learning disability and autistic people. That is why we invested £1.4 million to develop, test and trial the Oliver McGowan mandatory training with over 8,000 people in 2021. This will help to ensure that the training rolled out is meaningful and impactful. It is with great thanks to noble Baroness, Lady Hollins, for her determination and her collaborative work with the Government that I am very pleased to say that the Government would like to support the amendment put forward to introduce mandatory training on learning disability and autism.
While we are keen to support the amendment, we will be proposing to make some changes to ensure that it is fully workable and fits into the legal framework. It is likely that such changes will be introduced at the Commons consideration of Lords amendments stage. We have discussed this with the noble Baroness and we will ensure that we keep her fully updated with our proposals in this space. We hope that this commitment today sends a strong signal to people with a learning disability and autistic people, as well as their families and carers, that the Government are committed to addressing the significant and persistent health disparities that they face.
I could not make this announcement today without a special mention and thanks to Paula and Tom McGowan, who campaigned tirelessly for this cause. The resilience and commitment that both they and the noble Baroness, Lady Hollins, have shown have been inspiring. They should be proud of all that they have achieved for Oliver and for others whose lives have sadly been cut short.
To further emphasise the Government’s commitment to instilling real change for people with a learning disability and autism, 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. I commend this amendment to the House.
My Lords, I welcome the Minister’s statement—it really is very welcome—and declare an interest as a vice-president of the National Autistic Society. I also thank the noble Baroness, Lady Hollins, for her dedication, commitment and sheer endurance in pressing this matter of ensuring that those who support people with learning disabilities and autism are well trained. Training is essential if we are to help young people in particular to experience the kind of life that all of us in this Chamber take for granted. With the right support, young people with learning disabilities and autism can enjoy that quality of life. I do not intend to detain the House, but I will just share with colleagues some of my experiences of young people who have succeeded because they have had the right support.
I met an 11 year-old boy with learning difficulties at a special school. He said, “You’ve heard I’ve got learning difficulties?” I said yes. “My brother has too,” he said. “He is five; he’s got autism. I’m helping my mother help him.” I said, “Oh, that’s good.” “I’m off to comprehensive school,” he said. I said, “That’s good. Are you looking forward to it?” “Yes,” he said, “and I’ve decided on my career.” I said, “What are you going to be?” “I’m going to be a High Court judge, and I can tell you now, if you come up before me, you’ll get a lenient sentence.” The point is that the school had really worked hard, but the head said to me, “He worked hard too at overcoming these problems.”
I met Max at a joint meeting of the All-Party Group on Autism and the All-Party Group on Apprenticeships chaired by the late Dame Cheryl Gillan, who pioneered the Autism Act. Max worked for a housing association. When I went there, I could see how hugely supported he was, as he had been as a youngster, in his job by his colleagues. At that time, he was an amateur actor and had appeared on “Victoria Derbyshire”. That was then—now he is an actor, a producer, a public speaker, an ambassador for the National Autistic Society and a recipient of the Princess Diana award, awarded to changemakers for their generation. He has had that success because he had the right support.
Finally, I mention Louise—I have not met her; I have just talked to her. Louise had some difficult times early in her life. “You don’t look autistic,” somebody once said to her. She said that she was often humiliated by her teachers and those in authority, and when she tried to work, she had meltdowns and could not cope. She got her first job in her mid-40s. She is now working for a charity supporting people with autism, and she said to me, “Now I’m given the space, and they let me lead and I can flourish. I’m helping other autistic people improve their lives.” With the right support, quality of life has been given to that woman, now in her 40s.
My point is simple: given the right support and encouragement, people with learning disabilities and autism can have the same quality of life as we all in this Chamber would expect for ourselves and our families. I welcome the Government’s decision to support this amendment. There is still much work to do, but it is going the right way. I thank the Government, and especially the noble Baroness, Lady Hollins, for pioneering the work that we are talking about this evening.
My Lords, I congratulate the noble Baroness, Lady Hollins, on bringing forward such a wise and sensible amendment, which follows a series of failings in the healthcare system, failings which might have been prevented if health and social care staff had had the proper training to meet the particular needs of those with autism and learning disabilities.
I consider this amendment to be about fairness—those with autism and learning disabilities may be treated as anybody may expect to be treated. I thank the Minister for her very positive response, and her and her team for working so closely with the noble Baroness, Lady Hollins, and others to achieve the training of the relevant staff and to ensure a voice on integrated care boards. This is a fitting and lasting tribute to the memory of Oliver McGowan, and I am sure that it will always be regarded as such.
(3 years, 1 month ago)
Grand CommitteeMy Lords, I declare an interest as a vice-president of the National Autistic Society.
Autism is not a mental health condition, but many of Britain’s estimated 700,000 autistic people develop mental health problems and too many reach a crisis point that could be avoided. This is often because they cannot access the support in the community that they desperately need—a point well made in the opening remarks of the noble Baroness, Lady Hollins.
Due to way the Mental Health Act currently works, autistic people are at risk of being admitted to hospital and detained not because they have a separate mental health condition but because they are autistic. Not having enough services can be the reason for an autistic person’s detention or for preventing their discharge. Yet, as we know, the Mental Health Act code of practice clearly states that hospital is unlikely to be helpful in supporting autistic people.
More than 2,000 autistic people are currently in in-patient facilities, and more than one-third of them have been flagged as no longer needing care. Once detained, the average stay is almost five and a half years. This is an abuse of human rights, a point well made by the noble Baroness, Lady Bull, just now. As a former member of the Council of Europe, a body that Churchill helped to set up to protect human rights, Britain should be ashamed of its record in this respect.
I welcome NHS England’s long-term plan to reduce the numbers to below half the 2015 levels by March 2024. However, since the plan’s publication, there has been no significant reduction in the number of autistic people in mental health hospitals. Indeed, for much of the time, the number of autistic people in such hospitals was increasing. In 2015, autistic people made up 38% of the number; now, it is 59%. Autistic people should be able to live full lives in their communities with their families and friends. The Government must change the Mental Health Act to make sure that autistic people are not detained inappropriately in hospital.
Changing the definition of mental disorder to remove autism and learning disability in non-criminal justice-related matters is definitely the right step and to be welcomed, but we must provide the right community service support for autistic people with mental health needs. This must be underpinned by legal duties to have the right levels of support available in every part of the country—it cannot be some sort of pick-and-choose system. We must make sure that all mental health services have the right training fully to support autistic people, and there is a huge gap.
I welcome the rollout of the Oliver McGowan mandatory training in autism and learning disability, which is currently being piloted, but it must go further by promoting best practice, such as work recently done by the National Autistic Society in collaboration with Mind. More than that, we need to give talking therapists the guidance they need to make those vital early interventions work much better for autistic people. What steps have the Government taken to make sure that autistic people are not left behind in in-patient mental health hospitals when they should not be there in first place? How will the Government make sure that all mental health services have the right training to provide quality mental health support to autistic people because they do not have it now? In particular, will the Minister commit to funding the full rollout of the Oliver McGowan mandatory training? How will the Government guarantee that the right community services are available in every area for autistic people with mental health needs? Will the Minister commit urgently to review and improve the commissioning of support for autistic people and people with learning disabilities? Finally, will the Minister commit to develop clear guidance for commissioners in each area and provide commissioning support for those areas that need it most?
Locking up autistic people in the way we do now is a stain on British society. We should be ashamed of it, and we should put an end to it.