People with Learning Difficulties and Autism: Detention in Secure Settings
Baroness Hollins Excerpts(4 years, 2 months ago)
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Baroness Hollins
To ask Her Majesty’s Government what plans they have to prevent people with either (1) learning difficulties, or (2) autism, from being detained in secure settings when an assessment has recommended they should live in the community.
Baroness Hollins (CB)
My Lords, more than 2,000 autistic people and people with learning disabilities are currently detained in hospital, mostly inappropriately. Two years ago, the then Secretary of State asked me to review the care of 77 people who were at that time detained in long-term segregation. The number is now 100. My ICETR oversight panel includes people who have experienced long-term segregation themselves, family members, and experts in mental health, housing and social care. Those 77 people have all now had independently chaired education, care and treatment reviews.
We examined the first 26 of the 77 reviews in depth. What we found was profoundly shocking, and we identified several areas for urgent improvement, published in a thematic review. Typically, they had past histories of poorly commissioned education, therapy and care. There was little clinical continuity between hospital and community services, no clear therapeutic purpose for admission, and inadequate clinical assessments, with little recognition of previous trauma or its implications for mental health and behaviour. The oversight panel and NHS England have worked with the Royal College of Psychiatrists to develop a new clinical contract to try to ensure active management and therapeutic benefit.
More than half of those we reviewed were autistic people, both adults and children, but the hospitals where they lived, and those responsible for helping them move back home, lacked much understanding of the autism-friendly environment or care needed by autistic people. Most of the people reviewed were ready either to be discharged or to start a transition process back to their community.
Repeated past commissioning failures were compounded by poor commissioning responses to the ICETRs. Apathy and bureaucratic delays were part of the problem—professionals not turning up to meetings, agreed action not taken, wrangles over who pays for what. We saw interminably slow processes keeping people in situations that were at best inappropriate and all too often violated human rights. One woman had reportedly been ready for discharge for 19 years. I ask the Minister: how will Her Majesty’s Government ensure that ICETRs are being taken seriously by commissioners and that commissioners will be held accountable?
As part of our review, we gathered and published good stories of people who had managed to live happily in their communities after being discharged. We called the document Helping People Thrive, and it was written to inspire commissioners and clinicians. Mr W was one of those good stories. Prior to his discharge, he had been detained in hospital for more than 20 years, spending most of his time in what amounts to solitary confinement. Mr W has now lived in his own home for nearly three years, near his family. His home environment and care have been built around his needs. It costs no more to support him in this way than it did to detain him in hospital. Most importantly, despite still recovering from the trauma of being in the wrong environment for so many years, he is now happy.
We are pleased that our recommendations, both for senior intervention—a form of intensive case management to assist in overseeing discharge arrangements—and for the continuation of independently chaired reviews, have been supported by Her Majesty’s Government.
Some people we reviewed had social workers, advocates and families who were trying hard to move them back home, but a lack of local housing and care providers with the expertise needed was hindering their plans. A key part to successfully supporting someone in the community is the provision of good-quality housing. Sometimes commissioners are persuaded that moving the person to a single-person residence in or near the hospital is the solution, but such interim moves make it less likely that the person will ever move properly back to their own home community, and they incur continuing high fees for commissioners. How will Her Majesty’s Government ensure that there is enough housing, without months or years of delay? We must do everything we can to give people the choice to live where they want and with whom they want, just as we all do.
Sometimes, people tell us what they are unable to put into words through their behaviour. Recognising what they are trying to communicate and helping them to find a way to understand their feelings is often what enables people to move on from patterns of destructive or difficult behaviour. Good relationships with care staff are key, as shown in Dr Rebecca Fish’s recent research.
Speaking as a mother and former practising psychiatrist in this field, I believe that more attention needs to be given to really listening to people and enabling them to communicate what is troubling them, using whatever method works for them. Books Beyond Words—I declare an interest, as it is the charity I founded—creates word-free health and social stories to help people communicate their hopes and fears through the universal language of visual communication. Respond, the only specialist charity in the country offering trauma psychotherapy for autistic people and those with learning difficulties, is overwhelmed by referrals. Medication continues to be the main response to challenging behaviour. When will Her Majesty’s Government invest in widely available psychotherapy and specialist trauma therapy for people with learning disabilities and for autistic people?
Current community mental health and learning disability teams are rarely well equipped and resourced to provide the support needed for traumatised people. This deficit contributes to people’s care arrangements breaking down and to hospital admissions. If we invested in good local care, we could properly support people being discharged from hospital and prevent a new generation being admitted because of a lack of the right community support.
The social care system is nothing without the workforce. The pandemic has shone a light on the extraordinary dedication and determination of those who work in care. It is now time to address the many issues that have faced the workforce for several years, but which the pandemic has strained to breaking point. We do not currently have enough staff with the right training to ensure that people’s needs are met—staff who can empower and support that person to life their live to the fullest, who respect and value them, and can create good relationships with them.
Back in 2016, I chaired a report for Health Education England called Care Roles to Deliver the Transforming Care Programme, but little action to introduce effective training, supervision and meaningful career pathways seems to have happened. I recently visited care settings in Germany and was impressed by parity in length of training, pay, and terms and conditions for care staff, nurses, primary school teachers, occupational therapists and others. There were no staff shortages and services were much more joined-up.
How will Her Majesty’s Government ensure that care providers with expertise to support people like Mr W are available all over the country? Will they consider changing the rules, so that care workers can enter under the skilled worker immigration scheme? I hope the Minister will reassure me and the Committee that the expected reforms to the social care workforce and the promised cross-departmental strategy will tackle training as a priority. Could the noble Lord confirm whether recent recommendations from my oversight panel, and from all the other recent high-profile reports, are being taken forward in the Government’s new strategy?
Finally, I ask the noble Lord whether Her Majesty’s Government will consider making it a statutory requirement to report restrictive practices, including long-term segregation, and to publish details of commissioning organisations that still have patients in long-term segregation. Noble Lords may be surprised to know that many commissioning organisations that I have asked do not know if they have people in long- term segregation.
They could do this, for example, by making an annual report to Parliament about the numbers of autistic people and people with learning difficulties being detained in hospital, including those in long-term segregation, naming the responsible authorities, and reporting about the action being taken to develop effective care and support in the community, so that crisis admissions to hospital due to local service failures no longer happen.
We have debated this issue many times and read so many shocking reports. It is time to end scandals and tragic deaths and to give people back their lives. The new strategy needs political support. It needs resources to untangle the bureaucratic web and to reverse the perverse financial incentives that seemingly trap people in hospital. I am grateful to noble Lords for speaking in this debate and for helpful briefings from Mencap, Rightfullives, the Challenging Behaviour Foundation, the National Autistic Society and the Royal College of Psychiatrists. I look forward to hearing everybody’s contributions and the Minister’s response.
Covid-19 Update
Baroness Hollins Excerpts(4 years, 2 months ago)
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Lord Kamall (Con)
I thank the right reverend Prelate for his advice, and for pointing out the very important role that faith communities paid played helping many people get through the lockdowns. They play an important role in this country; many people often assume that it is down to the state, but faith communities play a really important role and complement many of the things we do.
In answer to the right reverend Prelate’s specific question, it should not be seen as plan A or plan B; it is sequential. The Government would prefer that plan A works and that we vaccinate more and make sure that we reach those who have not yet been vaccinated. But if the figures, and the various factors we are looking at—scientific, but also socio-economic—suggest that we have to go to plan B, then we will. At the moment, we are hoping that plan A will work, but we are reliant on the advice that we get from the various scientific advisers that I outlined, but also the other stakeholders, to ensure that we test plan A. Hopefully, it will work, but if it does not, we will move to Plan B.
Baroness Hollins (CB)
My Lords, I have recently returned from Germany, where medical masks are worn indoors in settings such as shops, restaurants, theatres, conferences, churches and, of course, on public transport. To enter, you have to show a Covid green vaccination pass—the QR code is checked—or, alternatively, a same-day antigen test performed and certified in a pharmacy. It is easy, it is acceptable, it is working and people feel safe. The death rate is much lower. Will plan B provide the same security and reassurance to British citizens as I experienced in Germany by mandating face masks and green passes, and will this happen soon enough to prevent more deaths? We started the pandemic with a first lockdown that was too late; plan B may be too late.
Lord Kamall (Con)
I thank the noble Baroness for sharing her experiences from Germany. We are relying very much on a range of scientific advisers to tell us whether we need to move to plan B but at the moment, because we are not where we were last winter and because we have broken the link between cases, hospitalisation and deaths, we would prefer to try plan A. If we have to move to plan B, we will—on the advice of our range of scientific advisers—but there are also some concerns, as the House can imagine. I think it was Professor Mark Pennington of King’s College London who said, when assessing Covid-19 and the response to it, that you have to look at it as a complex system. When one thing happens, there might be a reaction elsewhere but also unintended consequences.
One concern we have heard about mandating face masks at the moment is: who enforces that? Do we suddenly have more police enforcing it and become a police state? Transport workers are also concerned about having to approach certain people and ask them to put their mask on in the proper place, for fear of abuse, so we have to get the balance right. We will try to stick to plan A, given that we have broken that link between cases, hospitalisations and deaths, and encourage more people to get vaccinated while reaching out to those hard-to-reach groups. But if the numbers and the various indicators are there and the scientific advice tells us to move to plan B, we will do so.
NHS Update
Baroness Hollins Excerpts(4 years, 5 months ago)
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Lord Bethell (Con) [V]
My Lords, I am grateful to my noble friend for highlighting this important development. The cancer drugs fund was a great success, and we are building on it with a substantial investment. The new fund will support patients with any conditions, including those with rare and genetic diseases. Dementia is one area where we are extremely interested in looking at investing further, and I hope that this would be captured, but we are waiting for recommendations from NICE and the data that it will provide before we set the right prioritisations. In terms of the date, I do not have that at my fingertips, but I would be glad to write to my noble friend with the details.
Baroness Hollins (CB)
My Lords, the strategy promises millions to prevent mental health crises for autistic people and to help people detained in hospital back into the community. The Written Ministerial Statement responding to my 2020 independent report about people with learning disabilities and autistic people detained in long-term segregation was laid in the other place after the Minister’s Statement had finished. My report emphasised the urgency of these strategy promises. Will the noble Lord commit to meeting me, with the Secretary of State, to discuss the full implementation of my recommendations?
Lord Bethell (Con) [V]
My Lords, I am enormously grateful to the noble Baroness for her hard work in this area. We are taking a range of actions to drive further, faster progress on reducing the number of autistic people and those with learning disabilities in in-patient mental health settings, including robust action by the CQC, work on our new cross-government “building the right support” delivery board, and reform of the Mental Health Act. I would be very glad to meet the noble Baroness and her colleagues to discuss these and other measures in more detail.
Social Care Reform
Baroness Hollins Excerpts(4 years, 5 months ago)
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Lord Bethell (Con)
My Lords, the point made by my noble friend is entirely thoughtful and persuasive. Indeed, there may well be a role for insurance rather than any other mechanism, and it will be one of the options that those who define the policy will look at extremely carefully. The point that he makes about the desire of homeowners to pass on their homes to future generations is completely understandable and human, and one that will take into close consideration.
Baroness Hollins (CB) [V]
My Lords, further to my noble friend Lady Campbell’s question, will the Minister commit to mentioning working-age disabled adults every time social care reform is discussed? The needs of older people living in care homes are important, of course, but that is an easier focus for improvement. The real challenge is to improve care and support for disabled adults living in their own homes, including people with learning disabilities and autistic people.
Lord Bethell (Con)
I am extremely aware of the point the noble Baroness is making. A very large proportion of those in care are not elderly at all but the young and adult disabled who need some care for some condition, whether physical or mental. Their needs are paramount in these reforms. We will not forget the people the noble Baroness describes; the financial arrangements for supporting them are one of the things we absolutely want to take on in these reforms.
Social Care and the Role of Carers
Baroness Hollins Excerpts(4 years, 6 months ago)
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Baroness Hollins (CB) [V]
My Lords, I remind the House of my interests as chairperson of the independent care, education and treatment review process for people with a learning disability or autism in in-patient settings, as president of the Royal College of Occupational Therapists, and as a carer for my adult son.
There is a growing number of households of elderly carers who may have their own health and support needs but who still support adult children with a learning disability, themselves approaching retirement age. Mencap’s survey of such carers during the pandemic found that the majority experienced significant reductions in social care, including a lack of continuity of social worker input. Knowing that parents are ageing is a reason to make plans and to have good support in place, rather than waiting for a crisis. Too many crisis admissions to residential care or hospital occur after a last surviving parent has died or following some other trauma.
Last week, some families shared their stories in a report, Tea, Smiles and Empty Promises, to mark the 10th anniversary of the BBC “Panorama” documentary which revealed the abuse and neglect of people with a learning disability and autistic people at Winterbourne View hospital. Tens of thousands of pounds are spent detaining people such as these in hospital, rather than using the money to provide community-based support. Working-aged disabled adults account for half the total social care spend in England, and of this, learning disability accounts for one-third. Is the money being spent well? The answer is mostly no.
Far too often, our social care system ignores the real needs of disabled adults of working age for skilled support to live an ordinary and decent life. They absolutely do not need to be locked up, warehoused, or kept out of sight. This debate is not just about who should pay but about the very nature and quality of the support provided.
Social care exists for a purpose: to provide personalised care that ensures well-being in line with the Care Act 2014. When it is good, it is very good, but a system based on crisis management is a failing one. Of the workforce, currently 604,000 of the 1.5 million care workers in this country are paid less than the real living wage—that is nearly half. The social care people plan framework, launched at a major summit with politicians from all parties, this afternoon, argues for a real living wage for care staff, a national register and nationally prescribed training. Does the Minister agree? I believe that the case for a social care people plan to mirror the one already in the NHS for a similar sized workforce is unassailable. The Royal College of Occupational Therapists agrees.
NHS Digital: Primary Care Medical Records
Baroness Hollins Excerpts(4 years, 6 months ago)
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Lord Bethell (Con)
I am grateful for the noble Lord’s anecdote. It is no coincidence that he got the text yesterday. We have energetically promoted this opportunity to patients and we are grateful to those who have engaged. He is entirely right. Patient data played a critical role in the development of the shielding list during Covid, in the recovery clinical trials programme and in the vaccine priority list. Clinical data is essential for patient safety. That is why we are modernising the system by which we access it.
Baroness Hollins (CB) [V]
My Lords, the choice on the opt-out preference form is either:
“I do not allow my identifiable patient data to be shared outside of the GP practice for purposes except my own care”,
or:
“I do allow my identifiable patient data to be shared outside of the GP practice for purposes beyond my own care.”
The big question is: what is identifiable? For some people with disability, mental health and/or trauma histories, data might be easily identifiable. I knew nothing of this until last week. I await with interest the noble Lord’s reply.
Lord Bethell (Con)
The nature of the data is very explicitly described in the documents that the noble Baroness will have referred to. If she likes, I would be very happy to send her a full set of details. Of course, many patients have engaged with the process and, like the noble Lord, Lord Young, have made the wise decision to remain enrolled in the system.
Covid-19
Baroness Hollins Excerpts(4 years, 7 months ago)
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Lord Bethell (Con)
My Lords, the noble Baroness alludes to a dilemma that we face. It is not possible to organise surge testing and have pinpoint outbreak management in 120 different areas. That is just too many and our resources do not stretch to that. Many of the outbreaks are substantial clusters. Sorry—let me phrase that better. There is a small number of very substantial clusters in the towns and cities of which noble Lords will be aware. That is where we are focusing the surge testing and surge vaccination. In the other areas, we are working with DPHs to ensure that they know the best way to target the particular behaviours of the India 2. That means that it has very high transmissibility, which requires an extremely quick reaction to school and workplace outbreaks, and within specific communities. That kind of briefing and guidance has been channelled through the Chief Medical Officer’s department and the kinds of infrastructure that I described in my answers to previous questions. The response has been extremely strong and I hope we are making some impact on the spread of the India virus, but we remain extremely vigilant.
Baroness Hollins (CB)
My Lords, my question is about the implementation of quarantine regulations. How many travellers have been required to repeat the 10 days required in a designated quarantine hotel for a second 10-day period, with or without a positive Covid test? What appeal arrangements are in place because public guidance does not mention any? Is there any risk of exploitation?
Covid-19: Resuscitation Orders
Baroness Hollins Excerpts(4 years, 9 months ago)
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Baroness Hollins (CB) [V]
My Lords, given the significantly higher number of excess deaths among people with learning disabilities last year, will the Minister commit to finding out what proportion of those deaths were associated with DNACPRs? Does he agree that the use of blanket DNACPRs for people with learning disabilities is an indication of the extent of the lack of confidence and competence among healthcare staff to accommodate their needs, and adds to the urgent need to introduce the Oliver McGowan mandatory training currently being piloted? A timetable for the widespread introduction of that training would be very welcome.
The Lord Privy Seal (Baroness Evans of Bowes Park) (Con)
My Lords, I am afraid that we are having questions that are far too long. Can people please keep their questions brief?
Health and Social Care Update
Baroness Hollins Excerpts(4 years, 9 months ago)
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Lord Bethell (Con)
My noble friend is entirely right: this is a considerable dilemma not just for the Government, but for everyone. We in the UK have an enormously valuable project in our vaccination programme. Who does not relish the potential freedom from this horrible disease that it gives us? Yet we need only look overseas to see infection rates rising and the variants of concern spreading. The bottom line is that we do not know the impact of the variants of concern on the vaccine. Anyone who says they do for sure is simply not representing the truth. We have to be patient and figure out and fully understand the threat from the variants of concern. When we have that information, we can make a pragmatic, sensible and informed decision on foreign travel, as the Prime Minister has promised.
Baroness Hollins (CB) [V]
My Lords, I am so pleased that all people with learning disabilities who are known to their GP are now in either group 4 or 6 for vaccination. Will the noble Lord commit to reporting on the take-up of Covid immunisation for people on the register, both nationally and locally? Will he also report on the implementation of visiting policies for people with learning disabilities in both supported living and residential settings, and whether those residents are able to choose their one visitor?
Lord Bethell (Con)
Those were two extremely thoughtful and well-informed questions. I do not have the statistics at my fingertips, but I would be glad to go back to the department and write to the noble Baroness with the information she has asked for.
Covid-19: Vaccination Programme
Baroness Hollins Excerpts(4 years, 10 months ago)
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Baroness Hollins (CB) [V]
My Lords, I welcome today’s announcement that all people with a learning disability on their GP learning disability register will now be included in group 6. However, we know that these registers are incomplete. How will the Government and the NHS ensure that those in England not currently on the register can be added so that they can be offered a vaccine too? Will the Minister confirm that family carers and home carers will be offered vaccination at the same time?
Lord Bethell (Con)
We have to work with what we have. The existing register, while not perfect, is the tool that we have for our task. GPs had been encouraged to update registers in advance of the vaccine, as we had several months of knowing that it was coming. I understand that considerable work has gone into that. With regard to carers, my understanding is that they are not currently included in the clarification that came out today, but I am happy to confirm that point with her.