This short report comments on the progress following publication of our Out of sight – who cares? report and highlights the main areas where further work is still needed.
Out of sight – who cares?
Our Out of sight – who cares? report, published in October 2020, looked at the use of restraint, seclusion and segregation in care services for people with a mental health condition, a learning disability or autistic people.
- Key points
- 1. Introduction
- 2. What progress has been made
- 3. Findings on people’s experiences of services
- 4. What still needs to be done
In our Out of sight – who cares? report we made recommendations to support people with mental ill health, autistic people and people with a learning disability to receive the support they need, when they need it, to lead fulfilled lives without the need for restrictive practices.
This short report comments on the progress of this work and highlights the main areas where further work is still needed.
We have seen commitments made to respond to the recommendations in our October 2020 report. The health and care system has taken action to understand the needs of people with a learning disability and autistic people in inpatient units.
However, there is still much to be done. Too many people have still not seen their care improved. While the health and care system has made a commitment to increase the range of community support available to help prevent hospital admissions, this commitment now needs to be converted into real change.
Further reports of poor care have been published and we have seen this reflected in our regulatory activity. People using services deserve better and are being let down by delays in real progress.
Commissioning the right support and services for people with a learning disability and autistic people is not happening quickly enough. Clinical commissioning groups, and local authorities are concerned that it has become more difficult to commission the right services to make sure that people are leading fulfilling lives and are not subject to restrictive practices. People are still being placed in services rated inadequate, where the provider is unable to give the right care or provide the skilled staff to meet the specialist needs of the people they are paid to support.
The findings of this report show that too many people are still in inpatient wards and they are spending too long in hospital.
Getting the right care provision, support services and early intervention in the community will prevent hospital admissions, reduce the time it takes to discharge people into the right support and enable people to live their best lives.
We will publish a fuller report, looking at each of the recommendations, in Spring 2022.
Deputy Chief Inspector for people with learning disability and autistic people
Deputy Chief Inspector of Hospitals and lead for mental health
Several important reports and legislation have been published that have continued to highlight issues raised in our Out of sight – who cares? report.
Since the publication of Out of sight, stakeholders have been responding to the recommendations we made.
In CQC, we have been implementing the recommendations by improving how we identify closed cultures and the way we regulate services for people with a learning disability and autistic people.
Despite this progress, much still needs to be done to improve the health and care experiences of people with a learning disability and autistic people:
- there are still too many people in inpatient hospital wards
- when admitted, some people are spending too long in hospital and discharge can be very slow
- well over 2,000 mental health inpatients were reported to have been subject to restrictive interventions in August 2021
These findings indicate that we urgently need more appropriate housing provision, with a workforce in place who have the right skills to support people
In Spring 2022, we will provide a fuller update on progress against each of the 17 recommendations in Out of sight.
In November 2018, the Secretary of State for Health and Social Care asked CQC to carry out an urgent review of the use of restrictive practices for people with mental ill health, autistic people, and people with a learning disability.
The initial findings were published in our interim report, Review of restraint, prolonged seclusion and segregation for people with a mental health problem, a learning disability or autism in May 2019. Our final report, Out of sight – who cares? was published in October 2020. This concluded that the current system meant that people with multiple needs often did not receive the support they needed to lead fulfilling lives and that they were too frequently subject to harmful restrictive practices.
The report made 17 recommendations to support system changes.
In July 2021, the Secretary of State for Health and Social Care accepted, in principle, all the recommendations of the report where the Department of Health and Social Care was deemed responsible. The Secretary of State also urged officials to identify what work was urgent and what action needed to be taken immediately and encouraged other departments to do the same.
Impact of the COVID-19 pandemic
The COVID 19 pandemic has meant that an already stretched health and social care system has experienced a massive crisis. The impact of COVID-19 has been felt by people using services, carers, providers and individual staff.
Inequalities already experienced by people with mental ill health, people with a learning disability and autistic people have become even more evident. The pandemic meant that routines were altered, support was not always possible and access to services was limited.
The report, Coronavirus: lessons learned to date, from the Health and Social Care Committee and the Science and Technology Committee, highlighted that people with a learning disability were let down during the pandemic. The death rate from COVID-19 among adults with learning disabilities was 3.6 times the rate in the population as a whole.
Likewise, the pandemic was very challenging for many autistic people and their families. The Department of Health and Social Care commissioned the Policy Innovation and Evaluation Research Unit to undertake rapid research, which found there had been an adverse effect on autistic people, as also highlighted in the National Autistic Society’s ‘Left stranded’ report. These pieces of research detailed how autistic people and their families have become more lonely and isolated during the pandemic and experienced a deterioration in their mental health in many instances.
The effect of the COVID-19 pandemic on people’s mental health has been well documented. Mind have stated that the coronavirus pandemic has caused a mental health emergency and have published several reports highlighting the impact and challenges posed by the pandemic. These include digital exclusion, issues around discharge from hospital, as well as variation in, and increased demand for, children and young people’s mental health services.
There has been a particular impact on people whose mental health needs are such that they are currently detained under the Mental Health Act. Our 2019/20 Mental Health Act Annual Report, published in November 2020, showed how a combination of factors meant that this population is at particular risk of segregation and seclusion, including:
- extra restrictions on people in hospital due to lockdowns and other infection control measures
- reduced access to advocacy services
- the disruption of discharge plans.
There are further health inequalities, with COVID-19 having a disproportionate impact on people from Black communities who themselves are more likely in some settings to be subject to seclusion or segregation. We are working closely with the Advancing Mental Health Equalities Taskforce on areas such as the rollout of the Patient and Carers’ Race Equality Framework. This is a tool to help mental health trusts work with minority ethnic communities to achieve practical change.
Following feedback from over 16,000 people about how the pandemic has affected their mental health, Mind has set five tests for the government to meet to protect the nation's mental health. They have also formed a major coalition of over 50 voluntary and social sector organisations to call on the government to urgently establish a Mental Health Renewal plan in response to COVID-19.
2. What progress has been made
Since the publication of the Out of sight – who cares? report, stakeholders have made commitments in response to the recommendations we made.
Our report in Spring 2022 will give a fuller account of the progress made by a larger range of stakeholders in response to our recommendations.
The Department of Health and Social Care
The Department of Health and Social Care is key to driving forward many of the recommendations in our Out of sight report. An important lever for this has been through the establishment of the Building the Right Support Delivery Board to take forward the work. The Board is chaired by the Minister of State for Care and Mental Health. The Department is working with the Building the Right Support Delivery Board to develop an Action Plan. The Building the Right Support Action Plan has 4 chapters:
- Improving community support
- Preventing crisis and avoidable admissions
- Timely and effective discharge
- Quality of care
The Action Plan includes many of the recommendations in our ‘Out of sight’ report. However, there is still a need to understand how they will be practically delivered to ensure they will make a difference. We are working with the Department of Health and Social Care to ensure that the recommendations made in ‘Out of sight’ are appropriately captured in the Action Plan.
Several important reports and legislation have been published that have continued to highlight issues raised in the Out of sight report.
Independent Care (Education) and Treatment Reviews
In our 2019 interim report reviewing restraint, prolonged seclusion and segregation, we recommended that “there should be an independent and an in-depth review of the care provided to, and the discharge plan for, each person who was in segregation on a ward for children and young people or on a ward for people with a learning disability and/or autism”.
These reviews have taken place for people with a learning disability and autistic people in the form of Independent Care (Education) and Treatment Reviews (IC(E)TRs), which found similar findings to Out of sight.
The IC(E)TR’s provided an in-depth review of the care and treatment for 77 people, revisiting many of the people we had seen in the Out of sight review. For most people, little had changed to improve their situation and the IC(E)TR process highlighted that people cared for in isolation in hospital often:
- are accommodated in environments that are not suitable (or compliant with the Mental Health Act Code of Practice guidance)
- are not supported to maintain close contact with their families or enabled to retain their family's involvement in decisions about their care
- have not had a full assessment of their needs, and their life histories, including of past trauma, were not known
- are not being provided with the therapeutic care they need
- are not cared for by a consistent team of staff who have the right skills and have had appropriate training
- do not have a robust discharge plan in place
- are not being protected by the existing mechanisms designed to safeguard them.
A thematic report on these reviews was published by Baroness Hollins in July 2021 in The Oversight panel’s interim conclusions and recommendations which highlighted seven improvement areas for immediate action.
Additionally, Baroness Hollins recommended that IC(E)TRs continue, and all people with a learning disability or autistic people who are in long-term segregation will be offered an IC(E)TR. These will re-start in November 2021. A pilot of individual senior intervenors will also start in November 2021 to address blocks to discharge for 15 people detained in long-term segregation.
National strategy for autistic children, young people and adults
In July 2021, the government’s new National Strategy for autistic children, young people and adults was published. This promises to take forward the actions from Out of sight and Baroness Hollins and the oversight panel’s recommendations. It also contains the government’s vision for autistic people and their families across six priority areas:
- improving understanding and acceptance of autism within society
- improving autistic children's and young people’s access to education, and supporting positive transitions into adulthood
- supporting more autistic people into employment
- tackling health and care inequalities for autistic people
- building the right support in the community and supporting people in inpatient care
- improving support within the criminal and youth justice systems.
Government White Paper and Bill
The Mental Health Act (MHA) White Paper and the Health and Social Care Bill could support the implementation of the Out of sight recommendations and the recommendations highlighted in the reports above:
- The MHA White Paper has specific recommendations for the use of the MHA for people with a learning disability and autistic people, as well as wider recommendations that would affect all those with mental ill health who may be or are detained under the MHA. The government issued a response to the White Paper consultation on 24 August 2021, which says they ‘accept, and we will take forward, the vast majority of [the White Paper’s] recommendations for change’.
- The Health and Social Care Bill proposes a new role for CQC in holding health and care systems to account while encouraging them to move towards greater integrated working in order to reduce inequalities. The proposals would introduce a duty for CQC to carry out reviews and assessments of Integrated Care Systems, alongside a duty to assess the performance of local authorities. If passed through parliament, the Bill will help to meet the recommendations in the Out of sight report to focus the role and responsibilities of commissioners to ensure inequalities for autistic people and people with a learning disability or mental health condition are addressed and reviewed.
NHS England and NHS Improvement
Recommendation 3 in Out of sight urges community teams across the country to have better skills in caring for autistic people and people with a learning disability and/or mental health condition to prevent them from reaching a crisis. This may be done through either creating new teams or building on the skillsets of existing ones. NHS England and NHS Improvement (NHSE/I) has outlined various funding streams available to support such a change
Key areas of government funding highlighted by NHSE/I include:
- Long Term Plan funding (which is recurrent and increasing): in 2021/22 £25 million will support the further development of community services for people with a learning disability and autistic people with a particular focus on children and young people aged 14-25.
- Long Term Plan funding (which is recurrent and increasing): in 2021/22 £15 million for keyworkers for children and young people with the “most complex needs”, focusing on those at risk of admission to hospital or who are in hospital. The funding enhanced the previous year’s funding, which enabled 13 pilots in 2020/21 and an additional 14 early adopters in 2021/22. The plan is that there will be keyworkers in every area of the country by the end of 2022/23.
- £31 million of the one-off 2021/22 Mental Health Recovery Funding has been allocated to the learning disability and autism programme, including £7 million to support the development of autism diagnostic pathways for children, young people and adults (additional to recurrent Long Term Plan funding of £2.5 million per year). £10.5 million is being used to support the reduction of mental health hospital admissions for children and young people, such as health-funded crisis/short breaks provision, a keeping children in school programme and identifying children at particular risk of hospital admission.
Out of sight recommendation 5 proposes that there must be high-quality, specialist care for people who are in hospital for short periods, which must be focused on discharge, in line with and expanding on the NHS Long Term Plan commitments.
In response, NHSE/I has commissioned Mersey Care NHS Foundation Trust to deliver a HOPES programme, which is a clinical model of care to reduce long term segregation. It aims to reduce long-term segregation with autistic adults, adults with a learning disability and all children and young people in hospital settings and create outstanding culture change across services.
Recommendation 10 in Out of sight proposes that “people, their families and advocates must be involved in the development of services and care plans”. In response, NHS England are carrying out a review of advocacy for children, young people and adults with a learning disability and autistic people in inpatient settings.
We welcome these programmes, which are good initiatives to bring about change. However, it is not yet clear what level and breath of impact they will have and how quickly they will result in improved outcomes. There are still broader areas of work needed to ensure that recommendation 5 is fulfilled, including:
- developing contracts stating the outcomes for the person’s pathway from admission to discharge
- making sure screening assessments take place
- developing a trauma-based approach.
Care Quality Commission
In response to the BBC Panorama programme in May 2019 which highlighted shocking abuse of people with a learning disability and autistic people in an independent hospital, Whorlton Hall, we commissioned independent reviews to assess how we could improve our own regulation of these types of services and others that might have a ‘closed culture’. The first review was published in March 2020 and the second [and final] part of the independent review by Professor Glynis Murphy was published in December last year (2020).
We have been implementing recommendations from these reviews, as well as those from our Out of sight report, to improve how we identify closed cultures and hear from people who might be experiencing them.
From these recommendations, we have developed guidance and tools, data and intelligence, and training, which we have tested with our Expert Advisory Group. Our Expert Advisory Group is made up of people with lived experience of a learning disability, autistic people and those with mental ill health. It also includes national bodies that represent these services, providers, commissioners and other charities. Surveys of our staff have shown that they are more confident in being able to identify a closed culture and use regulatory action to prevent closed cultures in services.
Progress in guidance and tools includes:
- Updated guidance on closed cultures to help operational staff know the risk factors, warning signs and actions to take.
- Updated guidance on how CQC regulates providers supporting autistic people and people with a learning disability.
- Guidance to support our inspectors to assess the safe and appropriate use of surveillance to help them determine if people’s rights have been considered and respected. It also provides guidance on CQC’s access to recorded material and how we may use it to deliver our regulatory functions.
- Piloting our Quality of life tool, which looks at how well people's care plans are delivered in practice and helps to corroborate evidence between different sources, such as what we see, what people and their families tell us, documentation from services, and the environment. It focuses on the experience of the person receiving care, and how it feels for them using the service, so we might look at social media, ask for photos, or speak to people who run other settings like education services or day activities.
- Piloting the use of 'talking mats' on inspections, as recommended in the independent review by Professor Glynis Murphy. Talking mats are a communication and interactive tool that uses specially designed symbols to help communication. It can be used digitally or as a tabletop exercise. Talking mats have helped our inspectors and reviewers gather information about people’s experience of care, where people may have difficulty communicating to us through a verbal conversation. In some cases, the mats have helped to uncover concerns about an individual’s care.
One inspector’s experience of using 'talking mats'
Talking mats enabled our inspector to hear the views of Gerald who is in his 60s. He is non-verbal and has a severe learning disability.
The inspector described using the physical cards with Gerald, “I managed to complete a mat with him and, for what I think was the first time ever, he had a voice and could communicate.”
Staff at the service were speechless after realising that he was not playing a card game as they first thought, but that he was organising the mats in his own way. Gerald was able to communicate that he was unhappy with some aspects of his living environment, including his bedroom which he disliked as it was cold and noisy.
The inspector told the service about Gerald’s feedback and they have since taken him shopping for a thicker duvet and they are fitting door closers near his room to prevent them from slamming.
Following this the staff showed interest in finding out more about using communication tools, such as the mats, themselves.
Progress in data and intelligence includes the following:
- we are developing extra indicators to improve the identification of closed cultures
- we have created dashboards to help us identify the use of restrictive practices, such as restraint, seclusion and segregation and adverse events in mental health wards
- we have recently decided to use our powers under the Regulation of Investigatory Powers Act 2000. This expands the intelligence sources available to us.
Improving the way we regulate services for people with a learning disability and autistic people
We are carrying out a year-long programme of work, led by our Deputy Chief Inspector for people with a learning disability and autistic people, to transform the way we regulate services for this group of people.
Following the recommendations from the independent review by Professor Glynis Murphy and Out of sight – who cares?, we have improved our inspection methodology to focus on the culture of services and on identifying where people living in hospitals may be at a greater risk of poor quality of life. This has helped us better understand people’s experiences of care from their own perspectives and provide a different picture of the quality of care than we may have reached previously.
We know that hospitals are not the right place for people with a learning disability and autistic people to live long-term. However, we also know that adult social care community services also do not always get it right. We have therefore improved the way that we inspect those services, in the same way as we have for hospitals, to help us better understand people’s experiences of care.
Further work on the Out of sight recommendations for CQC
We are continuing to work on progressing the Out of sight recommendations for CQC. We still need to develop some of this work and ensure that it encompasses people with mental ill health and autistic people as well as those with a learning disability.
3. Findings on people’s experiences of services
Despite the progress against the recommendations in our Out of sight report, findings from published data sources and from our regulatory work show that much still needs to be done to improve the health and care experiences of people with a learning disability and autistic people.
Numbers of people in hospital
The 2019 NHS Long Term Plan set a target that by 2023/24 the use of inpatient beds for autistic people and people with a learning disability would be reduced by half, compared to March 2015 levels.
However, current data shows that there are still too many people in inpatient hospital wards. The latest Assuring Transformation data set published by NHS Digital for October 2021 shows that 2,070 people were receiving inpatient care. This is a reduction of 28% on the March 2015 figures, and a 6% reduction since the publication of our ‘Out of sight’ report in October 2020.
It should be noted that the data currently available from NHS Digital does not provide a clear picture of how many autistic people and people with a learning disability are receiving inpatient care at any given time. There are large discrepancies between the commissioner-reported figures in the Assuring Transformation collection and the provider-reported figures in the Mental Health Services Data Set (MHSDS). Work is ongoing to better understand these differences.
We still hear about incidents of restraint and the devastating impact of how they affect people.
My name is Sally and I am autistic. I have spent time as an inpatient in both child and adolescent mental health and adult mental health outpatient wards.
When I was a teenager I was going through a period of distress and asked for support from my social worker. This led to me going to an A&E department, where I experienced sensory overload. I was so distressed it led me to self-harm and I was admitted to an inpatient unit under section.
Once in the unit, I found that the staff did not understand how my autism affected me; they did not understand my sensory needs or explain to me clearly what was happening. The environment was loud, chaotic and frightening and all around me other patients were hurting themselves and being restrained. I communicated my distress by self-harming.
Sometimes the other patients were aggressive and I was attacked several times, causing injuries like a black eye and other bruises. Due to this I was put into segregation because they said it was for my own safety. I was also frequently physically and chemically restrained. I was frequently hurt when restrained as staff sat on me, pinned my arms and legs and dug their nails in. Being restrained was really distressing for me, especially when big men restrained me. Sometimes it would go on for hours and hours.
I was transferred to another hospital miles away from home and I couldn't see my mum or dad or any of my family and friends. I felt so lonely and frightened and I thought it would never end. Eventually I appealed my section at a tribunal and was immediately discharged.
Thankfully I was able to return home where I felt safe. Although I had no community support for some time after my discharge, I am now slowly beginning to receive some. However, my stays in hospitals have led to trauma and I frequently have flashbacks and nightmares due to this.
The Mental Health Services Dataset published by NHS Digital for August 2021 shows that 2,465 people in a mental health inpatient setting were reported to have been subject to restrictive interventions in the month, and there were 17 restraints per 1,000 occupied bed days.
The data also shows that in August 2021, 790 people were subject to chemical restraint. Among these people, chemical restraint was used on average 2.5 times per person:
- of these 790 people, 50 were children who, on average, received proportionally more interventions of chemical restraint than adults – 3.7 interventions of chemical restraint per child compared to 2.3 interventions of chemical restraint per adult.
- a greater number of females than males received chemical restraint. Females subject to chemical restraint also had more interventions – 2.9 per female compared to 2 per male.
We are very concerned that there are more people known to be in long-term segregation now than when the Out of sight review was commissioned by the Secretary of State in November 2018.
During our Out of sight review we saw 66 people who were in long-term segregation or prolonged seclusion in child and adolescent mental health service wards, wards for people with a learning disability or autistic adults, low secure and rehabilitation wards.
The number of people in long-term segregation reviewed for the Independent Care (Education) Treatment Reviews (IC(E)TRs) in November 2019 was 77.
The number has increased again for the second programme of IC(E)TRs starting in November 2021, which will be reviewing all people with a learning disability or autistic people in long-term segregation, which is currently 112.
Length of stay and discharge from mental health inpatient units
When admitted, people are spending too long in hospital and discharge can be very slow. Since 2012, successive governments have set targets to reduce the numbers of people with a learning disability and autistic people in inpatient settings, in favour of them being cared for in the community. However, these targets have not been achieved. This has recently been discussed in the House of Lords, raised by Baroness Hollins.
At the end of October 2021, the data shows that over half (56%, around 1,150 people) of autistic people and people with a learning disability who were receiving inpatient care in hospital had a total length of stay of over two years, and 17% (around 350 people) were recorded as having a total length of stay of over 10 years.
In October 2021, over half (57%, around 1,175 people) of autistic people and people with a learning disability in inpatient units did not have had a planned date for transfer or discharge. For those that did have a planned date for discharge or transfer, half were expected to leave within six months, 5% had a planned date for discharge or transfer between two and up to five years away and 18% were overdue for discharge or transfer.
My name is Tracey and I am an autistic woman who has also experienced mental ill health.
My journey within services began when I was 11 years old, due to experiencing bullying at school. I was admitted to the first inpatient unit at around the age of 13.
From there onwards, I was moved continuously in and out of child and adult mental health wards and assessment and treatment units, which were far away from my home. These units were not autism friendly and did not meet my sensory needs. They also caused my mental health to spiral and were not considerate of my physical health needs.
One of the units I was at was loud, echoey and utterly scary. I spent a large amount of time on that ward in seclusion, without proper bedding.
Finally, I was transferred to an adult autism inpatient unit, which was much closer to home, and was involved in every aspect of my care planning and was able to make advanced directives for when I was struggling. The unit helped me to formulate my past, listened to me and validated my experiences. A less restrictive approach was used at this unit that helped me to build confidence with everyday tasks.
I was eventually able to live in the community independently and now live in my own flat, not too far from home. I am now regularly going to college and have been working towards a level 2 in catering. I hope to eventually own and run an inclusive café which caters for autistic people.
Care (Education) and Treatment Reviews
In our Out of sight report, we recognised the importance of Care (Education) and Treatment Reviews (C(E)TRs) and their role in preventing admission and helping people with a learning disability and autistic people to be discharged from hospital. We therefore made recommendations specific to C(E)TRs, in addition to calling for them to become statutory.
The MHA White Paper and the new autism strategy have also called for C(E)TRs to become statutory. We have heard concerns recently from some stakeholders on our Expert Advisory Group that there is variation across local areas in who is receiving a C(E)TR in the community to prevent admission. There are also concerns about variation in the quality of C(E)TRs and that recommendations are not always being followed through in either community or inpatient settings. We will look into these concerns more and the data around C(E)TRs in our Spring report.
Quality of care in hospitals for people with a learning disability and autistic people
In addition to there being too many people with a learning disability and autistic people in inpatient units, there are still too frequently reports of poor care, treatment and abuse in hospitals.
As reported in State of Care 2020/21, our pilot inspections of hospitals for people with a learning disability and autistic people revealed that where services have a good culture and staff are engaged, we have seen people leading their best lives. However, we have found:
- getting the right staff with the right skills has become increasingly difficult during the pandemic, resulting in people’s needs not always being well met by staff who respect and value them
- in services where restrictive practice is frequently used – people are observed and followed rather than interacted with and given opportunities to develop skills and a meaningful life
- some people have become stuck in services and not able to move on to a community place
- some people were moved into care services during the pandemic without good planning and support, which stopped them settling in – this is distressing for them and disruptive to others
- fewer face-to-face visits from families, commissioners, professionals and providers have made it more difficult to identify when closed cultures could be developing
- quality assurance systems, which check that good care happens around the clock, supported by every member of staff, have never been more important.
Where we have seen poor care, such as an over-reliance on restrictive interventions, some of which do not respect people’s rights, we have taken a range of enforcement action, including cancelling registration resulting in a service being closed. In some instances, we imposed conditions to prevent new people from being admitted when there was a risk that the service could not provide people with the level of safe care required.
However, we have found that there is currently a problem in the system. We have seen people being moved from hospitals that have closed due to concerns about the care to other hospitals or community services that are unsuitable to meet their needs. Commissioners must make sure that they find the right home and train the right staff to meet each person’s needs, rather than locating any available bed.
To ensure that people with a learning disability receive good care we use Right support, right care, right culture to help us make decisions about the registration of new services and the quality of care in existing services. Right support, right care, right culture describes our regulatory approach for these services, covering our registration, inspection, monitoring and enforcement functions. It makes our expectations clear to future and existing providers, but it must also guide those commissioning and planning services.
The number of people in hospital and the length of time it takes to discharge people indicates that we urgently need more appropriate housing provision. We are concerned that people are still being placed in the wrong services, that are not able to meet their needs because they do not have the right model of care, the right culture and the right staff skills.
In September 2021, we published Home for Good that focused on successful community support for people with a learning disability and autistic people. The report includes eight stories of people who have previously been placed in hospital settings, who are now thriving in community services across England.
We found that good community support featured:
- person-centred care
- appropriate, bespoke housing and environments
- involving families.
A guide has also been published from the Oversight Panel for IC(E)TRs. Helping People Thrive tells five stories of autistic people and people with a learning disability who have been detained in hospital or in long-term-segregation for too long and how their lives have been transformed by a new and satisfying life in the community.
To make sure all people with mental ill health, autistic people and people with a learning disability can continue to live in the community of their choice there needs to be a recognition that people may have fluctuating needs. Services that wrap around the individual to give that additional support should be in place, including early intervention and preventative services, alongside crisis support. This requires agencies to work together, in partnership across health and social care boundaries.
4. What still needs to be done
We have seen through this report that there has been considerable effort made to progress the ‘Out of Sight’ recommendations; however we have also highlighted many areas of concern which show there is much work still to do.
While we have seen that there is a commitment to improving services for people with a learning disability, we need to question if this is the same for people with mental ill health and autistic people.
Most autistic people who need inpatient support will be using mental health inpatient services and not specialist learning disability and autism services. We also know that there is a long waiting list for a diagnosis of autism within the community. Experimental data reported by NHS Digital in September 2021 indicates that 49% of new referrals for suspected autism between January and March 2021 were still waiting for a diagnosis or care contact. This can mean that people go into crisis without there being a proper understanding of their needs.
More must be done to understand and ensure that children and adults with mental ill health are getting the therapeutic care and treatment they need in the community to reduce the need to be admitted. The development of community services to enable alternatives to admissions and to ensure speedy discharge are vital, as evidenced in State of Care 2020/21. If people with mental ill health are admitted to hospital, this needs to be for the shortest time possible, with a measurable objective in place and the correct therapeutic environment to reduce the need for restrictive interventions.
There is a shortage of places for all people to live, and the range of options are not enough. All people, including those who have fluctuating needs, should be able to receive a responsive service and community support should be available to maintain their lives over difficult periods. Early intervention and crisis support need to run alongside this. Commissioners should ensure that the placements they are commissioning are able to meet individuals’ needs, to enable them to lead fulfilling lives.
For people to be able to receive the right care, the right staff need to be in place. Recommendation 7 in Out of sight states that there must be enough staff with the right skills, competencies and experience to provide high-quality, person-centred care for people with a learning disability, autistic people and people with mental ill health. However, there is now a more concerning staffing crisis within the health and social care sector, than before the pandemic.
We have reported on these issues in State of Care 2020/21, where we said “health and social care staff are exhausted and the workforce is depleted”. There have been calls for the government to urgently review the needs of the workforce through qualifications, additional training and pay increases.
In our Out of sight – who cares? report, we were clear about which areas needed more attention and what impact this could have on people’s human rights. Across the work being developed from Out of sight, an understanding of people’s rights must be embedded into decision making at all levels. This needs commitment at system as well as organisational level. For an organisational approach to protecting and respecting people’s rights to be successful, there has to be a skilled and motivated workforce, with good training in person-centred care and human rights. There also must be effective leadership, including oversight of how people’s rights are being upheld in practice. This applies to both providers and commissioners of care.
This progress report has given an update on key areas of progress and highlighted the areas where further work is needed.
In Spring 2022, we will provide a fuller update on progress against each of the 17 recommendations in our ‘Out of sight – who cares?’ report. We hope that by this point there will be further progress against each recommendation.
Additionally, we have been hearing worrying reports about the use of restraint in acute hospital settings. We will therefore also explore this in our Spring report.