Independent report

Thematic Review of the Independent Care (Education) and Treatment Reviews

Updated 8 November 2023

Thematic Review

This Thematic Review should be considered alongside the recommendations made by the Oversight Panel for the Independent Care (Education) and Treatment Reviews (IC(E)TRs).

The Thematic Review of the IC(E)TRs informed the discussions of the Oversight Panel and supported the development of its recommendations. The Thematic Review highlights common themes and findings among the IC(E)TRs and identifies clear thematic issues that need to be addressed.

Method

In developing the Thematic Review, Alicia Wood and Baroness Hollins conducted a detailed analysis of 26 (a third) of the 77 IC(E)TRs to derive thematic learning and identify the common concerns and issues relating to the care and treatment of people with learning disabilities and/or autism in long-term segregation (LTS). Our analysis was conducted in 3 phases:

• after each IC(E)TR, the independent chairs completed a form detailing information about the individual and their care and shared this with the department. This information was anonymised so that the person could not be identified. Baroness Hollins and Alicia reviewed the forms for the 26 individuals in the sample group to identify common themes

• Baroness Hollins carried out telephone interviews with the IC(E)TR chairs to debrief as soon as possible after each review and to seek further clarification. This provided additional information about the barriers to progress and helped to identify concerns about each individual’s situation and to make recommendations for improvement, as well as informing the thematic review

• 2 focus groups were held with the IC(E)TR chairs and Care Quality Commission (CQC) Mental Health Act (MHA) reviewers to test the findings and themes from the thematic review

Findings

It is important to note that some individuals who had their cases reviewed were placed in segregation in order to cater to individual needs (for example to experience less noise or overstimulation). For most, however, segregation was being used in response to challenging behaviour in the absence of the right therapeutic care and environment. Some hospitals attempted to create a more ‘home like’ environment by adapting a room or suite of rooms in a part of the hospital, with nearly half of the 26 cases in the sample being segregated in this way. While the other half ranged from more ‘acceptable’ single rooms to high security environments, some without facilities or comfort, including some bare cells with hatches for surveillance, communication and to deliver food.

Some of the issues highlighted through the reviews are considered likely to be applicable in many assessment and treatment units (ATUs) and secure hospitals more generally and not just for those people who are subject to LTS. Some people in segregation had plans in place to move back to an open ward with other patients. For some, however, moving to an open ward was not considered to be a positive next step by the IC(E)TR chairs. The IC(E)TRs questioned the suitability of a psychiatric hospital environment to properly assess and care for people with learning disabilities and/or autism, and particularly the lack of autism friendly environments (the provision of which could be considered a reasonable adjustment).

There were some examples of better practice, but these were quite rare.

The Oversight Panel’s improvement areas and findings

The findings detailed below are those which were identified as the most common issues or concerns that need to be addressed. This does not mean that these issues are present in all cases and it also does not mean that these are the only issues or factors being considered. Rather these should be seen as the main thematic findings derived from detailed analysis of a sample of the independent reviews.

The findings, aims, actions and recommendations are separated into 7 improvement areas. These are:

• to improve substantially the quality of diagnosis, treatment and care in hospitals

• to commission, skilled, safe, kind and appropriate person-centred support

• to ensure there is accountability for action particularly by commissioners

• to listen to patients and families, put them at the centre of care planning and ensure skilled and appropriate representation or advocacy

• to make money work

• to continue to provide oversight and independent scrutiny

• other areas or findings

To improve substantially the quality of diagnosis, treatment and care in hospitals

In the 26 cases we considered as part of the Thematic Review, there were some examples of high-quality assessment and treatment and one hospital stood out as having excellent clinical leadership, demonstrating that a robust and integrated formulation and treatment plan could form the basis for enabling a person to progress and move on to life in the community.

In the other cases, however, there were recurring patterns or issues that we noticed.

These were:

• a lack of effective clinical leadership

• a lack of recognition or addressing trauma and other psychological issues

• the inadequacy or absence of a multidisciplinary clinical assessment, formulation and treatment plan

• hospitals being used as a place of safety – not for assessment and treatment

• a failure to work collaboratively with Child and Adolescent Mental Health Services (CAMHS) or Community Team for People with a Learning Disability (CTPLD)

• people being detained under the separate autism or aggressive behaviour criterion without having an identified mental illness

• a lack of understanding of autism either with no diagnosis being sought or lack of reasonable adjustments made

• unmet needs for additional clinical intervention and specialist therapy

• lack of or low quality positive behaviour support (PBS) and behavioural support plans

• sensory and environmental assessment or review needed

• medication review needed

• no person-centred plan or life history

• lack of full communication assessment

• no reviews of LTS in some cases

Of the 26 people in the review, 15 people had been diagnosed with autism (more than 50% of the sample) and in a further 9 cases it was suspected that the individuals may be autistic but had either not been assessed yet or had no planned assessments.

Some of the hospitals and commissioners appeared not to understand autism and fewer appeared to understand specific profiles such as Pathological Demand Avoidance. Few providers seemed to understand how to support autistic people well, particularly in terms of sensory and environmental needs and making reasonable adjustments to manage these needs.

In some cases, there were concerns about the quality of care and the hospital environment. Staff burnout and lack of support for staff can have an impact on their empathy and the way they care for people. High staff turnover and use of agency staff can also present issues in continuity of care.

Only a small minority of the environments assessed appeared fit to care for people who need to be in hospital and the need for stimulating and appropriate activity was largely overlooked.

Many of the LTS environments were created in an attempt to give the person what they need in terms of space, quiet and being away from others taking account of their sensory needs but were not appropriate long-term solutions. In some cases, it seemed that the individual suffered from boredom and loneliness with no one to talk to, no friendships or relationships. There was also little focus on people’s special interests, skills and talents when these are the things that help people to feel better about themselves.

There were also inhumane examples of bare cells with hatches in the door as the only means to have contact with others including one report of a person having to kneel to take their food through a hatch. In extreme cases like those described the IC(E)TR chair or MHA Reviewer took appropriate action by raising safeguarding concerns locally.

To commission, skilled, safe, kind and appropriate person-centred support

In the 26 cases we considered there were recurring patterns or issues regarding commissioning, planning for discharge, service specification and transition planning. We also noted a lack of (or perceived lack of) the right community support in both health and social care services.

A person-centred service specification is a basic requirement of any discharge plan and should provide details of the housing, care and clinical support needed in the community. The majority of IC(E)TRs found that there was no service specification, or it was not up to date or complete. There was also sometimes a lack of understanding about what person-centred care and specifications mean and should look like.

Transition and crisis planning were also lacking, and it was felt in several of the cases that the commissioner had limited understanding of the community support required to meet more complex needs. There was little evidence of planned transition of clinical responsibility between hospital and community teams or an understanding of the need for it.

In several cases, the hospital clinical and care team did not understand the nature of good community support and positive risk taking, and this was hindering discharge, an example of this being the insistence on 24-hour clinical support in a service specification when this was not considered necessary by the IC(E)TR. Given that most of the people who were subject to IC(E)TRs were living in segregated arrangements with 24-hour care staffing, such arrangements could be replicated in the community in a much better way.

The lack of knowledge and experience amongst some hospital staff and commissioners about best practice in community placements was found to be hindered by a relative lack of aspiration and risk aversion. Commissioners were sometimes found to be reluctant to fund a full well-rounded package of care, demonstrating a lack of understanding that properly funded care upfront would prevent costs and save money in the long term. A lack of consistent and person-centred case management is a big issue in many cases and often results in readmittance to inpatient care or LTS.

Of those that are ready for discharge, some had been waiting for a long time, one person for 19 years. Complacency and bureaucratic delays were felt to be a problem at many of the IC(E)TRs. Several of the IC(E)TRs were for people in hospitals that were closing imminently, and it was clear that people would have to be moved to another hospital, and in most cases, this was not in their best interest. It was felt there was a lack of effective challenge by commissioners about these ‘sideways’ moves.

There appeared to be very little leadership around planning for discharge and only 2 examples where project management was used to plan and deliver a community solution. Given the complexity of what is needed in supporting people to move on successfully, this lack of case management was reported as a big gap.

In many cases the IC(E)TR chair felt that the individual’s case could be progressed quicker with the intervention and support of independent case or project management team with specific or relevant expertise on the individual’s needs. Many of the cases considered demonstrated a lack of creativity addressing some of the challenges to moving the individual to less restrictive settings and into the community.

With regard to care and support in the community, the IC(E)TRs we reviewed showed that skilled care providers and the right housing were difficult to find in many cases. A significant number of people in LTS were being earmarked for a service that was part of the hospital re-provision, either on the existing hospital site or a supported living development by the hospital provider. It was questioned in many of the IC(E)TRs as to whether this was suitable for the person. It appeared to be connected to a belief that the person couldn’t live in the community or that the hospital provider was diversifying to other services.

In several cases, previous community arrangements had gone wrong where it was clear that the support that was provided was not good enough and had failed people. This was conveyed in a way that made the failure sound as if it was about the person’s characteristics rather than a failed service. This seemed to be interpreted to mean that the person had a record of not being able to live in the community and made potential providers fearful about supporting the person, and families and clinical staff fearful about another move to a community arrangement. There was no evidence that lessons had been learned from the breakdown of support to inform future arrangements.

There were also examples of some providers being proposed during IC(E)TRs that had been rated in need of improvement by CQC. This was questioned but not seen as an issue by some commissioners.

The local community (mental health) teams were seldom involved or mentioned in IC(E)TRs. Some consultants expressed a view that local clinical expertise would be insufficient to meet a person’s needs. In some cases, overmedication in the community had previously been used rather than more skilled and sustained clinical support to individuals and their families. So being admitted to hospital has in some cases been beneficial to people when it resulted in a clinical review of their medication and circumstances to make their care more tailored or personalised.

To ensure there is accountability for action particularly by commissioners

In most of the IC(E)TRs, there was a demonstration of the lack of accountability by commissioners. It was felt by some IC(E)TR chairs that commissioners did not think the person should move into the community and were influenced by the cost. In many cases the commissioners were considered to be complacent and seemed to lack capability and expertise to drive the progress in the individual’s care.

In several of the IC(E)TRs, previous actions that were noted/recommended in Care (Education) and Treatment Reviews C(E)TRs were not being implemented. Some of these issues were very serious, including in relation to safeguarding concerns, yet they did not seem to be taken seriously enough.

The IC(E)TR chairs noted issues with the IC(E)TR such as a lack of independence previously, poor organisation and not taking the IC(E)TR process seriously. There were several examples of families and advocates not invited or unable to attend because of lack of poor coordination/complacency. There were also reported incidents of unprofessionalism from panel members.

There were also many issues with poor planning and paperwork, with insufficient planning in place to develop the individual’s situation towards discharge.

There was often a sense of complacency and a lack of accountability in both NHS and local government organisations for the wellbeing of individuals in LTS.

To listen to patients and families, put them at the centre of care planning and ensure skilled and appropriate representation and advocacy

In the 26 cases we considered there were some recurring patterns or issues regarding communication with the individual and engagement with their family.

It was noted that very few of the people who had IC(E)TRs understood their situation and how they could work towards discharge. Some people lacked capacity to understand their situation and few of these appeared to have had speech and language assessments. Most would have benefitted from communication tools and methods such as pictures, Makaton or easy read, but generally this option seemed to be lacking in most hospitals.

There were a number of cases where it appeared that the professionals currently involved did not have an accurate and detailed life history of the person. In some cases, decisions were being made about the person’s care without consulting them or their family and in several situations, the families of the person felt marginalised and that their views were being ignored. Where families had strong views about the person’s needs, many had been described as difficult or interfering. Where families lived far away from the hospital, few hospitals seemed to support or enable engagement and visits. Some families could not afford the cost of regular visits. Some patients reported not being able to have private calls and private visits with family.

Some people’s relationships with families had broken down and they would have benefitted from support to rebuild and re-connect. It seemed that in some cases relationships and family were not seen as important to the individual’s wellbeing.

Families often reported feeling sidelined, in some cases feeling brow-beaten and maligned. In a recent report, the Joint Committee on Human Rights (JCHR) stated that family members ‘must be recognised as human rights defenders, and other than in exceptional circumstances, be fully involved in all relevant discussions and decisions’

Furthermore, members of the panel with first-hand experience stated that families often find it difficult (due to financial constraints, employment responsibilities and so on) to visit their relatives, especially for out of area placements

They also reported a lack of support to individuals and their families on discharge from hospital, noting that discharge from hospital can often fail due to the lack of support offered and in particular the failure to consider the negative impact of the person’s hospitalisation (especially LTS) on the person and its potential to fracture family relationships.

In some cases, families were unaware of their roles or rights to make decisions for relatives who lack capacity. None of the cases we considered had court appointed health and welfare deputies.

Advocates were involved in some, but not all IC(E)TRs. There was concern about the quality and/or independence of advocacy for some people and particular concerns for people who do not have families and the lack of independent specialist advocacy. Overall where advocacy was in place the quality was felt to be ‘poor to alright’.

As Out of sight – who cares? highlights, while almost everyone under Mental Health section is entitled to an advocate, there is frequently no evidence of advocacy being offered and it is not always clear who is providing the service. Too frequently advocacy availability is dependent on a positive choice being made by the person – who may not know what advocacy is, that they are entitled to it, or how it might help, or might find any of these things difficult to address. While provider and clinical staff ought to ensure that people understand that advocacy is available to them and how to get the service, this does not always happen in practice. Similarly, currently, C(E)TRs sometimes ask if the person has an advocate and recommend one where there is no Independent Mental Health Advocates (IMHAs), but all too often this does not lead to any action.

To make money work

In feedback and updates requested from commissioners following IC(E)TRs it was noted that in some cases there were delays in discharge including patients medically fit for discharge, but remaining in seclusion because of disputes between partner agencies, involving funding.

It was noted in 3 IC(E)TRs that some people will require a more costly arrangement in the community than in the hospital and this may be why discharge has been delayed.

Another issue identified was that the commissioner wanted to move (too) quickly so that there were fewer double running costs, and this was influencing the decision rather than what the person actually needed. Other examples were noted of commissioners focusing on cost rather than individual needs.

One example was a commissioner stating that a Personal Health Budget could not be the mechanism for funding, which contradicted NHS policy. There were other reports of C(E)TR panels not fully understanding the funding mechanisms.

There was one example of the health and social care funding split not being agreed and this delaying discharge. In addition, Oversight Panel members currently working in supporting discharge of patients reported that the disputes over funding by health and social care is a significant factor in delaying discharge.

Generally, the processes for care funding and capital funding seemed to take a long time and there was a concern that people are unnecessarily being delayed for discharge because of this.

To continue to provide oversight and independent scrutiny

In August, NHS England and Improvement (NHSE/I) reported the feedback from commissioners on people who had had IC(E)TRS. Of the 62 people that had had an IC(E)TR at the time of requesting feedback, only 3 people had been discharged (one person already had a planned discharge at the time of the IC(E)TR and one person was on extended section 17 leave. An additional 5 people had left LTS but remained in hospital.

This points to a disappointing lack of progress but also to an urgent need for continued oversight and scrutiny that will support, and drive progress being made in these cases. For many commissioners it seems that the IC(E)TR process was viewed as another tick box exercise and once it was complete the recommendations were often ignored.

We know that the COVID-19 has had an impact on the ability of some providers and commissioners to progress individual cases, but there is a clear need for continued support and scrutiny in individual cases to ensure that recommendations are being acted upon and that progress is being made.

Thirteen cases were also directly referred to the local authority as a safeguarding concern by the IC(E)TR Chair or CQC MHA reviewer. These were immediately notified to the region for additional scrutiny and follow up with confirmation that regions were engaging with the safeguarding process.

Reasons for referrals included:

• delays in discharge including patients medically fit for discharge, but remaining in seclusion because of disputes between partner agencies, involving funding

• poor quality of the person’s environment

• a lack of care and observation

• not being able to access outside spaces

• not adhering to the MHA (provider using their own sister hospital to conduct the external ‘Seclusion Review’, which meant that there was no independence and possible bias)

There were questions in a few cases about why safeguarding concerns were not being picked up before the IC(E)TRs. Without the independent review process, it is unlikely that these issues would have been identified or raised.

Other areas and findings

The use of restrictive practice was in some cases reported to be an aggravating factor for aggressive or destructive behaviour, particularly for people with autism.

Many of the patients reviewed had acquired a criminal record while in hospital.

There were also concerns about the inappropriate use of hospital admission under the MHA. In many cases, hospitals are being used as a last resort for people with learning disabilities or autistic people.

Concluding remarks

The findings from this Thematic Review point to a number of serious and recurring issues that require urgent and immediate action. There is also scope for the consideration of longer-term, systemic changes that are aimed at delivering a lasting impact and sustained improvement in these areas.

The Oversight Panel has considered these findings and has made its recommendations primarily based on the findings in the Thematic Review. Its recommendations have also been informed by the insights provided by Panel members themselves and the advice of expert groups (such as the Royal College of Psychiatrists, Voiceability and POhWER).