People’s experience of hospital care

Page last updated: 25 March 2022
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Recommendation 5 (receiving the right support in hospital)

In our Out of sight report in 2020 we highlighted the awful experiences that many people in hospitals were having. We found that poor physical environments, restrictive cultures, poorly paid and unskilled staff meant that hospitals were not therapeutic environments. This often led to people becoming distressed, which led to restrictive interventions such as restraint, seclusion and segregation.

To address this, we made recommendations to the government, NHS England and NHS Improvement (NHSE/I) and commissioners to ensure that when people are admitted to a mental health hospital (including assessment and treatment units for people with a learning disability and autistic people), they receive planned, high quality, specialist care for the shortest time possible in a therapeutic environment. We have highlighted below what it would mean for people if these recommendations were implemented.

If recommendation 5 was fully implemented, people who are admitted to hospital would:

  • only be admitted when essential for their treatment, and for the shortest time possible. The focus would be on discharge, and planning for this would start before admission
  • be assessed by community health and social care teams before admission who understand their needs, with measurable objectives set for the admission
  • receive high-quality, specialist care, in an appropriate environment, with small units for autistic people, specifically designed to meet their needs
  • receive further assessments to screen for autism, sensory sensitivities, physical health, mental health needs, learning disability, trauma, and any other relevant assessments, so that the objectives set on admission and care plans would meet people’s needs
  • receive person-centred care in hospital environments that are therapeutic, enabling person-centred and trauma-informed care
  • have a named budget holder, who must be responsible for commissioning a new placement within an agreed timeframe
  • would have a named care co-ordinator and system navigator if they have multiple needs.

Has recommendation 5 been achieved?

We consider that recommendation 5 has not been achieved

There are still too many people in hospital, in environments that are not therapeutic, and people are staying there too long. There has been significant investment in improving therapeutic environments, however it is too early to see the impact.

Action needed:

  • People must only be admitted to hospital when it is essential. It must be time-limited and only for treatment, not because there is a lack of support in the community.
  • Culture must be changed to promote rights and ensure a co-produced person-centred, trauma-informed approach.
  • Discharge planning and setting objectives must happen before or immediately after people are admitted.

What we have been seeing and hearing

There is still a long way to go to make this recommendation a reality. There are still too many people in hospital, and we are still hearing too many accounts of people in inpatient units receiving poor care and treatment. Recent stories that have made the headlines, such as ‘Patient A’ and ‘Tony Hickmott’, Cawston Park Hospital, and the BBC report on the failures of specialist mental health units, have highlighted that people are not always receiving the care and treatment that they should while in hospital and their discharge is not being prioritised. This is supported by findings from our inspections.

The Health Select Committee’s report from July 2021further highlights that being in hospital is often not therapeutic, and that there is a lack of discharge planning. There is not enough appropriate community support available to help prevent admission and then enable discharge.

Scarlet’s story of being in hospital

My name is Scarlet and I have bipolar. I stayed in hospital for four months because they couldn’t get my medication right. I wasn’t offered counselling.

I only saw the consultant once a week for ten minutes, and he would decide if you were staying in. I feel like decisions were made without me, and I’m not sure if my husband felt involved. I’ve still not seen my care plan. I have asked for it before and they said, “Oh, you’ve had one.”

In terms of family visiting, I could see them once a week for about an hour, which is not long. I feel like family should have more of an input.

No-one acknowledges the trauma of being an inpatient. I don’t think it helps when there are people with different levels of mental illness.

I called hospital a glorified prison. I live at home now and it is better for me, but you still have flashbacks to when you weren’t allowed to bath on your own or go into the kitchen without asking a member of staff.

Therapeutic environment

Hospital environments can be overwhelming for everyone. People no longer have access to familiar things around them that give them comfort. They also lose their usual routine. Hospitals can be particularly difficult for autistic people, for example because they may have sensory sensitivities affected by environments. On top of this, if staff do not understand people’s needs, such as the trauma they have experienced, their communication needs or how their autism affects them, the whole situation becomes even more distressing for people. This can lead to people being subjected to inappropriate restrictions.

Rather than being therapeutic, the ward environment is often focused on containment and risk management with people’s distress looked at as behaviour to manage rather than a communication of unmet needs. Autistic people tell us that staff on the ward often do not recognise their autism diagnosis or understand how it affects them.

Additionally, people do not always have access to regular therapy to get better, such as psychology, occupational therapy or speech and language therapy. Access to education for children and young people may be limited.

Jasmine’s story of being in hospital

I was admitted in hospital in April 2021 due to a bad episode of depression.

The nurses were always busy. I often felt like a burden and was afraid to talk to the nurses, as I felt like I was annoying them and adding to their workload. When I did ask them a question, they told me to talk to another nurse or come back to them later. I would get very confused as I did not know when ‘later’ meant. I discussed this in my ward round with my psychiatrist who spoke to the nurses about being more specific with me about timeframes. The nurses put this into action, and I was happy with the result.

I also did not feel safe in the hospital as there was a patient who was verbally and physically aggressive towards me. She once took my phone and refused to give it back to me. There was a nurse nearby, but they were busy talking to another patient. When I got her attention, she helped me get my phone back. I felt like the ward was very understaffed and nurses weren’t very supportive.

Ali’s story of being in hospital

When Ali went into hospital because of mental ill health, she thought there was a lack of staff, probably because of COVID-19 and having to self-isolate. There were a lot of agency staff, so there was no consistency. She said, “When I’ve been in hospital before it was similar. There was not very much therapeutic input. It was more about containment and medication. There’s nothing to do or keep your mind off what you’re experiencing.”

There has been progress on working towards this recommendation. However, as yet, people have not felt a significant impact from this progress.

The NHS Long Term plan (2019) has set a commitment that by March 2024 inpatient mental health services will be improved by increasing investment in therapies and activities, to give people a better experience in hospital. NHSE/I told us that to support acute mental health care that is therapeutic and purposeful from the outset, new funding has been secured to increase the number and mix of staff on the wards.

NHSE/I have developed the learning disability improvement standards for NHS trusts. The standards are intended to help organisations measure quality of service and ensure consistency across the NHS in how they support people with a learning disability and autistic people. In 2020, 178 trusts participated. The long term plan commitment is to roll them out across all NHS-funded services by March 2024.

In 2019, NHSE/I established The National Quality Improvement Taskforce for children and young people’s mental health inpatient services for children and young people’s mental health, learning disability and autism inpatient services. This has worked on a range of projects aimed at improving the quality of care for children and young people in mental health inpatient care. The Taskforce has:

Quality of inpatient care

Due to the lack of community services and hospital beds across all mental health services, commissioners are still sending people into inpatient units that we have rated inadequate.

The Health and Social Care Committee’s July 2021 report showed that in June 2021, 170 people with a learning disability and autistic people were in hospitals rated inadequate, and a further 185 people were in services rated requires improvement.

It is possible to have a positive hospital experience. Despite working in difficult circumstances, staff can be caring, understand what it means to be autistic and help people to see family and friends and involve them in their care and support.

Rebecca’s experience of inpatient care

I am autistic and have an eating disorder.

I was an inpatient during the Covid restrictions which was really challenging. I did struggle without my family being able to come in and visit me. When I was really struggling, I was allowed to see a psychologist. I explained I liked to take photos and they agreed I could use my mobile phone camera in the garden. Each day a part of my routine was taking photos of things in the garden (not patients) using mindful photography techniques; this helped me to cope.

When I was moved to another hospital after two weeks the change was overwhelming. In that hospital I met a member of staff that understood autism and created a visual routine for me, including daily one to one time with staff, gentle one to one exercise and occupational therapy. At times I struggled with distress, often around sensory overload from noise, things not being clear and ward rounds being difficult.

I can recall the kindness of a particular healthcare assistant who would always check in on all the patients when they started their shift. They made me feel human and took me on leave within the grounds to buy snacks from the vending machine to find some way of replicating normality. The ward also had an art room, which was open all day and up to 11pm. On many wards access to things like this are really restricted. That room felt like a place of safety, peer support and connection – it was a place where I was able to see a tiny bit of hope.

I know there was reluctance to admit me to hospital as I’d had admissions in the past, but those five weeks in hospital helped me to get to a place of hope where I could manage my mental health back in the community.

The number of people in hospital

Too many people are still spending too long in mental health hospitals too far away from home. NHS Mental Health Services Data Set (MHSDS) shows that, while the number of people in mental health inpatient services reduced in 2020, they have since rebounded to be similar to pre-pandemic levels. There were 25,023 inpatients at the end of October 2021, just 1.2% below the number of inpatients at the end of October 2019, with 1,199 of these being people aged 18 or younger.

The NHS Long Term Plan made a commitment that by March 2024 the number of autistic people or people with a learning disability in mental health inpatient facilities will be reduced by 50% compared to the number in March 2015. There has been progress on this. The data from the Assuring Transformation collection published by NHS Digital shows that at the end of December 2021, there were 2,065 autistic people or people with a learning disability in hospitals in England (figure 1). This is a 29% reduction on the March 2015 figure and a 6% reduction since we published our Out of sight report in October 2020.

The NHS Long Term plan also set a target that by March 2024 “for every one million adults, there will be no more than 30 adults with a learning disability and/or autism cared for in an inpatient unit.” Our analysis shows that at the end of December 2021 this number stood at 43, so there is further progress needed to meet this target.

However, the NHS Long Term Plan commitment that for every one million children and young people, no more than 12 to 15 children and young people who are autistic orhave a learning disability would be cared for in inpatient facilities, is currently on track to meet the target.

The Assuring Transformation data for December 2021 shows that the number of people in hospital with a diagnosis of 'learning disability only' has nearly halved since March 2015, whereas the number of people with a diagnosis of 'autism only' has increased by 61%.

There has been an increase in the number of people having to go to hospitals ‘out of area’ (away from their local community). The Health Service Journal recently reported that out-of-area placements had returned to pre-pandemic levels through most of 2021 but then increased towards the end of the year. These increases have been put down to a number of reasons, which we have also highlighted in this report, such as workforce shortages, COVID-19 and lack of available beds. The Assuring Transformation data set for December 2021 shows that, after excluding newly admitted patients and those where the person’s home postcode could not be traced or derived,more than a third (36%) of autistic people and people with a learning disability in hospital are 50km or more away from home.

Getting out of hospital

Once admitted, many people are spending too long in hospital, getting stuck in the system, with an ineffective discharge process.

We recommended that where hospital admissions take place, there should be an immediate focus on discharge, with the person and their family central to discharge planning. However, we know that this is not occurring, and people are getting stuck in hospital, sometimes for many years.

Adam and his family’s story of trying to leave hospital

My grandson Adam is a teenager and has been living in a hospital, detained under section 3 of the Mental Health Act, for five years.

Adam is an adorable lad with an amazing sense of humour and enjoys messy play and jumping. He is autistic, has a learning disability and a mental health condition. This can lead to him becoming distressed, which means that he is often violent to himself and others.

Adam rarely leaves his room as he prefers to stay in and will need to be restrained on a regular basis, although he sometimes actively seeks out restraint.

His staffing is four-to-one on good days, but this may go up to seven-to-one when he is poorly. His staff team in the hospital have gained his trust, are responsive to his needs and very caring.

Although the hospital started Adam’s discharge planning on admission to the hospital, it has taken five years to get a plan in place for him to have his own home in the community and we have hit many hurdles along the way. These include:

  • It took the local authority three years to appoint a coordinator to organise transition. We were concerned that decisions were being made on a basis of cost and not need.
  • Finding a property took a long time. We now have one two miles from where Adam’s mum lives.
  • Identifying a care provider proved difficult. Many came to visit, certain they could provide the care, but would then change their mind.

Thankfully a provider has now been found. They are very engaged with us as a family. We have been able to write the job description for the registered manager and they will allow us to sift applications and be involved in interviews.

The longer Adam is in hospital, the more institutionalised he becomes. Staff are doing their best, but there are restrictions as it is a hospital environment.

The Assuring Transformation data shows that 55% of autistic people or people with a learning disability in a mental health hospital at the end of December 2021 had a total length of stay in hospital of more than two years. Around 355 people (17% of people in inpatient services) had a total length of stay in hospital of more than 10 years.

Nearly two-thirds (63%) of the 355 inpatients that have had a total length of stay of over 10 years are subject to Part III of the Mental Health Act. However, there are 25 people recorded as having had a total length of stay in hospital of more than 10 years who are informal patients and not subject to the Mental Health Act.

While there may be variation in how delayed discharges are recorded, the MHSDS data available on delayed discharges of people in mental health inpatient services suggests these have increased through 2021. In October 2021 the recorded number of days of delayed discharge was 53% higher than the same point in the previous year. The main reason given for delayed discharges was that the person was waiting to go to a care home. The second most common reason was a delay awaiting housing, with getting supported accommodation being a particular issue.

The Assuring Transformation data shows that less than half (43%) of autistic people or people with a learning disability in a mental health hospital at the end of December 2021 had a planned date of discharge or transfer. Nearly two-thirds (64%) of those that did have a planned date were due to be discharged or transferred within the next 12 months. However, just over 1 in 5 (21%) were overdue for discharge or transfer.

The data also shows that in only 40% of cases, where a person has a planned date of discharge or transfer, was the relevant local authority aware that the person was being discharged to their area.

When we met with commissioners, they told us that local authorities need to be more involved in the journey towards discharge.

NHSE/I told us that:

  • £116 million has been allocated during 2021/22 to support people with mental ill health through inpatient services and to ensure that people who are ready to leave inpatient facilities have the community support they need to do so
  • the funding has also been used to address pressures in urgent and emergency mental health pathways to ensure that people with urgent and acute mental ill health can access high quality support promptly
  • providers have implemented several initiatives to support more timely and effective discharges, including step-down supported housing, temporary accommodation solutions, additional capacity in home treatment teams and inpatient wards dedicated to supporting discharges, as well as home-based care packages.

Setting objectives for admission and screening assessments

During the original review for our Out of sight report, we found that people were often being admitted to hospital without a clear objective for what the stay in hospital would achieve. Once in hospital, people were not receiving screening assessments for autism, sensory needs, physical and mental health, trauma and learning disability, or were having previous diagnoses, such as autism, challenged or ignored. We therefore made recommendations to change this.

NHSE/I have told us that they are currently testing new approaches to help define the purpose or goals for people being admitted to hospital. This is to ensure that treatment and care is clearly set out and focused on discharge, so that people only stay in hospital for as long as their treatment takes to complete.

Recommendation 16 (restrictive interventions)

Our Interim report in 2019 and Out of sight report in 2020 highlighted the serious concerns that we had regarding the use of restraint, seclusion and segregation for people with mental ill health, those with a learning disability and autistic people. This was of particular concern in inpatient units, but we found they were also being used in adult social care settings. We therefore made several recommendations to try to effect change. To date, little progress has been made. Far too many people are still subject to restraint and seclusion and more people than before are in long-term segregation.

If recommendation 16 was fully implemented, people would only be subject to restrictive interventions when absolutely necessary and for the shortest possible time because:

  • providers would monitor their use in line with best practice
  • they would be checked by appropriate statutory and regulatory bodies in line with guidance and regulations.

Has recommendation 16 been achieved?

We consider that recommendation 16 has not been achieved

Restrictive interventions continue and are often used inappropriately when people communicate their distress and unmet needs. There are more people in long-term segregation now than there were in 2019. Each restrictive intervention may cause further trauma.

Action needed

  • The use of restrictive interventions must be reduced by services working with people, their families and advocates to understand people’s distress and the best way to meet their needs.
  • Projects, such as life planning and senior intervenors, need to be funded beyond March 2022.
  • The current approach used for Independent Care (Education) and Treatment Reviews must be reviewed.

What we have been seeing and hearing

Restrictive interventions

There is a continued over-reliance on restrictive interventions. People are too frequently subjected to practices that are about containment and are not therapeutic. Restrictive interventions include restraint, seclusion and long-term segregation.

It is important to remember that each time a restrictive intervention is used, it has an impact on that person and staff; restrictive interventions can cause further trauma to people and add to feelings of dehumanisation.

MHSDS data shows that in October 2021:

  • there were 1,920 people in mental health inpatient settings who were subject to restrictive interventions
  • for those people, restrictive interventions were used 11,355 times
  • of the people who were subject to restrictive interventions, 160 were children and young people
  • the rate of restrictive interventions of children and young people was much higher than adults – averaging 20 restrictive interventions per child and young person, compared to almost five per adult.

Representatives from hospital and adult social care providers felt that the focus of monitoring shouldn’t only be on the number of restrictive interventions, but that more qualitative information is needed alongside the figures to provide context about the use of restrictive interventions.

Restraint

The MHSDS data for October 2021 shows that physical restraints were used most frequently during the month, followed by chemical restraint (medicines used to restrain or control behaviour) (figure 2). Four hundred and twenty people were restrained using rapid tranquillisation (intramuscular injections of medicines) and this was used 1,125 times. This is an average rate of 2.68 uses of rapid tranquillisation per person.

Alexis’s experience of chemical restraint (rapid tranquilisation)

Your whole body and mind are invaded by the chemicals, and you are literally in a fog and can’t see out. I used to beg for it not to happen, but it always did. I would be injected. You can’t do anything other than wait hours for the drugs to wear off and the brain fog to clear. When it clears you have a hangover. Your body feels numb, and your mind feels heavy – you can’t think clearly.

Then you sit in seclusion and wait for it all to happen again. You know it will happen again because the environment will get you overloaded. Then staff will respond with restraint and injections. You feel powerless to stop it. The wait is anxiety provoking and the begging is dehumanising.

MHSDS data for October 2021 shows that 65 people were subject to mechanical restraints a total of 130 times in the month (average rate of two uses of mechanical restraints per person). Our Expert Advisory Group highlighted that it is not known which hospitals hold supplies for mechanical restraint such as leg straps, spit hoods and belts so that their use can be monitored.

Seclusion and long-term segregation

The MHSDS data shows that 520 people in mental health inpatient services were secluded at some point during October 2021 and 110 people were in segregation.

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. Our original review found 77 people in long-term segregation across all CAMHS services, low secure and rehabilitation wards and wards for people with a learning disability and autistic people.

NHSE/I told us that, as at February 2022, there are 126 autistic people or people with a learning disability in long-term segregation. This includes 15 children and young people.

People tell us how entering long-term segregation, and the lack of choice, control, and meaningful activity it can bring, dehumanises them and sometimes leads to them giving up hope.

The hopelessness of long-term segregation – a mother’s perspective

I have an autistic son who has been segregated for many years. Before he entered hospital, when he lived at home with me, he had some independence and was making slow progress towards moving to his forever home. He could use kitchen appliances and made food for himself with minimal support.

The council had lined up two homes for my son. However, we didn’t even get to the stage of viewing the homes, and we were simply told they weren’t ready for him. This was over four years ago, and since then he has been stuck in a small, converted filing room segregated from all other patients at the hospital.

My son’s autism means that he does not like uncertainty and change to routine, so taking him to this hospital for an unknown period of time with no indication or certainty of when he will be moving on to his forever home has caused him a lot of distress.

Due to his sensory needs, this environment wasn’t suitable for him. There were locked doors and light switches on the other side of the room which he could not control himself. This increased his distress and could have been avoided, as I asked them to put the switches inside, but families are not listened to enough.

To begin with, the staff support for my son was two-to-one. However, because of the distress he shows now, it has now increased to five-to-one, with no real communication between him and the staff.

My son has to ask permission to eat and drink. His only contact with the world is through a hatch through which staff pass his meals. People wouldn't treat an animal the way my son is cared for.

I am not allowed to have real physical contact with my son. The last time I was able to enter the room to see and have close physical contact with my son was April 2021 [as of February 2022].

My son is still in this situation. Currently, his care costs just under £1 million a year, but I think what my son really needs is to live out in the community in his forever home. Nothing has really improved, and I am wondering how has it come to this?

NHSE/I have received funding from the Department of Health and Social Care for national projects to help support people in long-term segregation. These are summarised below, but more information can be found on the NHSE/I update on reducing long-term segregation. These projects are very welcome but have not yet had an impact on reducing the number of people in segregation.

Independent Care (Education) and Treatment Reviews

Independent Care (Education) and Treatment Reviews (IC(E)TRs) are available for all young people and adults with a learning disability or who are autistic, who are in long-term segregation. Although IC(E)TRs have taken place, they haven’t had sufficient impact and haven’t resulted in real changes to people’s lives by enabling them to leave segregation and be discharged from hospital.

Following the recommendations from our interim report, a programme of IC(E)TRs was established. We gave an overview of progress on this programme in our progress report in December 2021.

This programme has used the process available through the Care (Education) and Treatment review system, but with the addition of an independent chair appointed by the Department of Health and Social Care and a CQC Mental Health Act reviewer.

IC(E)TRs have had some success through the ability to bring together agencies to collaborate in new ways, and a clear leadership approach through the national Oversight Panel. The Oversight Panel has continued to build on and advocate our recommendations, with new proposals for change being developed and progressed by Baroness Hollins who has shared developments of the programme directly with the Secretary of State. This has been even more critical during the pandemic.

The ongoing scrutiny by the Mental Health Act reviewers involved in the panels has also enabled us to take further regulatory action, where we have identified failings in care, and to use this as a lever for change following the panels.

There were 77 people with a learning disability or autistic people in long-term segregation in hospital on 5 November 2019. All 77 people have had an IC(E)TR.

There have been some benefits to the IC(E)TR programme in improving care and moving people onto a more positive pathway. However, IC(E)TRs have not secured discharge for many of the people who have been seen. Of the 77 people, 71 remained in hospital at the end of the programme, with 49 still in long-term segregation. To respond to this, Baroness Hollins and the oversight panel recommended a second phase of IC(E)TRs to use the learning from the first programme.

In February 2022, for the second phase, NHSE/I have identified 126 autistic people and people with a learning disability in long-term segregation who will now be offered an IC(E)TR. However, IC(E)TRs have not had the impact intended and this, along with some logistical difficulties, will need to be addressed as the programme moves forward. We will work with Department of Health and Social Care, NHSE/I and the oversight panel in the coming weeks as they develop and review the options for increasing impact and consider how we can use the resource available to secure the right system for people and their families.

Life planning

Work is underway to ensure everyone who has a learning disability or who is autistic in long-term segregation is offered a life plan. The life plan should help people to have a better quality of life in hospital and support their move to the community. There are also some advocacy pilots linked to life planning. However, there is only funding available for these until March 2022.

Senior intervenors

The national Adult Senior Intervenors pilot project is being established to introduce an additional senior person to support local services to plan for discharge, guide where there is challenge, and agree actions to reduce restrictions. There are seven senior intervenors nationally, to help speed up discharge from hospital for the 111 adults in long-term-segregation. Evaluation of the project is due in March 2022.

HOPE(S) Model

NHSE/I have commissioned Mersey Care Foundation Trust to deliver a HOPE(S) programme across mental health, child and adolescent mental health services, and learning disability and autism inpatient services across England. HOPE(S) offers training, support, and clinical interventions to reduce restrictive practice, develop positive cultures and strengthen clinical leadership in inpatient care.

The HOPE(S) clinical model is based on a philosophy of person-centred, human rights-based care, which includes an unconditional, relentlessly positive approach to reducing long-term segregation. They have begun recruiting specialist practitioners, but any impact will not be seen for some time.

Recommendation 14 (Care (Education) and Treatment Reviews)

Care (Education) and Treatment Reviews (C(E)TRs) were developed as part of NHS England’s commitment to improving the care of autistic people and people with a learning disability in England, as part of the Transforming Care programme of work.

A C(E)TR is a meeting about the care, education and treatment of a child or young person who is autistic or has a learning disability who is either at risk of being admitted to an inpatient service or is in one. For adults it is a care and treatment review (CTR). In this report we are using the term C(E)TR to cover both types.

A C(E)TR identifies how each person can have the best quality of life, and how care and treatment can support this aim. An inpatient C(E)TR asks whether the person needs to be in hospital, and community C(E)TRs ask how the right services can be put in place for them to live safely in their communities.

In our Out of sight report we called for C(E)TRs to be statutory so that responsible organisations are held to account and people can receive the outcomes they deserve.

If recommendation 14 was fully implemented:

  • all autistic people and people with a learning disability would have a C(E)TR if there is a risk of being admitted or if they are admitted to hospital
  • providers and commissioners would ensure they carry out the recommendations in people’s C(E)TRs because they are statutory, and they would be held to account if they are not followed through
  • people’s needs would be identified and understood by members of the C(E)TR panel because they have the relevant experience and understand the person’s needs
  • people would be able to get support from a specialist team when it is difficult to find solutions to prevent hospital admission or ensure discharge, using joined-up commissioning.

Has recommendation 14 been achieved?

We consider that recommendation 14 has not been achieved

Where Care (Education) and Treatment Reviews (C(E)TRs) are taking place, people are not seeing their recommendations acted on.

Action needed:

  • C(E)TRs must be made statutory so that providers and commissioners are accountable for implementing the recommendations.
  • While waiting for legislative changes, providers and commissioners must ensure C(E)TR recommendations are carried out.
  • Autistic people must consistently receive both community and inpatient C(E)TRs.

What we have been seeing and hearing

For people with a learning disability and autistic people, Care (Education) and Treatment Reviews (C(E)TRs) are important to stop admission to hospital and, if admitted, progress towards discharge.

People with lived experience and their families have told us that they feel that C(E)TRs are the most important tool they have to make sure their viewpoints and needs are heard so that changes can happen. However, when C(E)TRs take place, often their recommendations are not carried out, which means they are not as effective as anticipated.

Despite proposals for C(E)TRs to become statutory in the government’s autism strategy and the Mental Health Act White Paper, this has still not been implemented. This means there is no accountability on providers, commissioners, or clinicians to ensure recommendations made within the C(E)TR are implemented. There are, however, quality assurance and escalation routes set out in the NHSE CTR Policy and Guidance document. The Department of Health and Social Care remains committed to placing C(E)TRs on a statutory footing through reforms to the Mental Health Act.

NHSE/I collect local data from commissioners about the care and treatment of people with a learning disability and autistic people, including outcomes of pre-admission C(E)TRs.

NHSE/I’s analysis showed the number of C(E)TRs carried out has risen each year up to 2020/21. The proportion of pre-admission C(E)TRs that resulted in a decision not to admit the person to hospital has also increased year on year (to 84% between April to November 2021).

The Assuring Transformation data shows that at the end of December 2021, 84% of people in a mental health hospital who are autistic or who have a learning disability had received a C(E)TR within the last year. However, for nearly 1 in 10 people in hospital (9%) it had been more than a year since their last C(E)TR. This may have been affected by the challenges of the pandemic.

In December 2021, 180 people in hospital had a C(E)TR, and for just over half (52%) the outcome was that they were not ready for discharge. In 18% of C(E)TRs the person was deemed ready for discharge, a discharge plan was in place and a discharge date was planned within the next six months. However, the outcome of 15% of C(E)TRs in the month was that while the person was ready for discharge, there was no discharge plan in place.

Our Expert Advisory Group tell us that in their view the C(E)TR process is now less effective than it was in 2020. The key issues are:

  • the right people are not always involved, so decisions are not followed through. Representatives from the local authority, such as social workers, are less likely to be present due to staffing pressures
  • there is a lack of engagement from stakeholders
  • the process on admission is not tight enough. An initial C(E)TR needs to set out the reasons for admission, and then a repeat C(E)TR needs to occur within three months
  • some people told us that their areas do not complete C(E)TRs for autistic people who do not have a learning disability. Some community mental health teams are not aware of C(E)TRs
  • some services, such as eating disorder services, may not even be aware that they should be ensuring that autistic people have a C(E)TR.

The Mental Health Act White Paper and the new autism strategy have 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
  • variation in the quality of C(E)TRs and those recommendations are not always being followed through in either community or inpatient settings
  • not enough accountability for ensuring the actions within C(E)TRs are completed and followed through.

A parent’s story of his daughter’s experience of C(E)TRs

My daughter is autistic. She has been in hospital for six years in different settings. She has had over 14 Care (Education) and Treatment Reviews (C(E)TRs).

The C(E)TR is an opportunity to hear an independent panel recommend changes that will improve care and remove barriers to discharge. I sit in a room with my daughter’s commissioner from the clinical commissioning group, an Independent Chair, an Independent Clinical Reviewer who checks on the medications, and an Independent Expert with Lived Experience who knows what it’s like to be in hospital. All of these people were paid to travel, then stay overnight in a local hotel, whereas I had to drive 230 miles at 4am at my own cost. We are joined by some of her care team – others are too busy or send a colleague who has never met my daughter.

Recommendations have previously been made to improve the environment, change care plans, manage her weight, investigate health concerns raised by us (we recognise changes staff don’t see), and involve her in more engaging activities – building on her positives rather than dwelling on risks.

Other recommendations have been around discharge planning and, at times, the removal from segregation and other restrictions.

These are recommendations that, if enacted, would see her care improve radically. They would mean she could come home, to a setting that would meet all of her needs.

They never happen. They are never actioned.

The staff who care for her aren’t even made aware of recommendations made by this panel or any suggestions from previous reviews.

The Responsible Clinician’s decision in all matters relating to my daughter is final, so the panel’s recommendations mean nothing unless she agrees with them and that never happens.

So the failed care continues.

And the person who entered hospital as a scared child has grown into an institutionalised adult without hope. And we get to do it all again in six months’ time.

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Restraint, segregation and seclusion review: Progress report (March 2022)

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