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23/8 HSDR Care (Education) and Treatment Reviews for people with learning disabilities and/or autistic people - supporting information

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Published: 16 January 2023

Version: 1.0- November 2022

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Please note; the following is intended to provide further information on the background of this call but does not constitute an exhaustive review of the literature in this area.

National policy and context

It has long been recognised following high profile scandals such as Winterbourne View, that people with learning disabilities and autistic people are being inappropriately admitted to hospital, experiencing long-term segregation while being cared for in inpatient settings for many years and without adequate plans to support discharge. This led to a renewed cross-government commitment to transforming care for people with learning disabilities and/or autistic people who display behaviour that challenges with an emphasis on delivering more care and support in the community and closer to home, reducing the number of people being cared for long-term as hospital inpatients.

‘Building the right support’ (BtRS) and the creation of 48 transforming care partnerships set out ambitions to increase the provision of care and support delivered in the community and reduce the use of inappropriate and lengthy stays in inpatient settings for people with learning disabilities and/or autistic people. As part of BtRS, a number of changes were introduced including the use of Care (Education) and Treatment Reviews as a safeguard to independently assess and make recommendations for care and support needed to facilitate people to continue living in the community or be discharged from inpatient settings and/or long term segregation.

The NHS Long Term Plan, published in 2019, reemphasises the ambitions of BtRS and makes a commitment to reduce inpatient provision to less than half of 2015 levels by 2023/24; for every 1 million people, no more than 30 adults with a learning disability and/or autistic people will be cared for in an inpatient unit. For children and young people (CYP), no more than 15 children with a learning disability, and/or autistic children per million will be cared for in an inpatient facility. They also propose to increase investment in community support to enable more people to receive care in the community.

More recently, high profile reviews including the Safeguarding Adults Review (SAR) report from Norfolk Safeguarding Adults Board and the recommendations from the national programme of Independent Care (Education) and Treatment Reviews (IC(E)TRs), chaired by Baroness Hollins, have set out additional recommendations in relation to improving the care of adults with learning disability and/or autism in long-term segregation. The National Safe and Wellbeing Review Programme has checked the safety and wellbeing of all people with a learning disability and/or autistic people in mental health hospitals or other inpatient settings. Insight from this programme will feed into regional and national learning and response. An action plan of BtRS has also recently been published (July, 2022), bringing together key commitments and recommendations from multiple reports and organisations to provide a clear view of what must be delivered.

Additionally, proposed changes to the Mental Health Act 1983 published in the Reforming the Mental Health Act white paper may have broader implications on models of care for people with learning disabilities and/or autistic people. As well as requirements for Integrated Care Boards to develop and maintain dynamic registers to identify people with a learning disability and/or autistic people who are likely to be at risk of admission. The proposed reforms include learning disability and autism no longer being considered a mental disorder for which someone can be detained for treatment under section 3 of the act. The reforms also include placing Care and Treatment Reviews and Care, Education and Treatment Reviews on a statutory footing to be considered in care and treatment plans.

Care (Education) and Treatment Reviews

Care and Treatment Reviews and Care, Education and Treatment Reviews are a part of a wider national care plan laid out in BtRS introduced by NHS England in 2015. They are called Care and Treatment Reviews (CTR) for adults, and for children and young people, they are called Care, Education and Treatment Reviews (CETR). Please note, unless stated otherwise, throughout this document ‘C(E)TRs’ is used to refer to both types of review (involving adults or children) for people with learning disabilities and/or autistic people.

The aim of a C(E)TR is to reduce admissions, unnecessary lengthy stays in inpatient settings and health inequalities, by checking that people with learning disabilities and/or autistic people are receiving appropriate care that meets their individual needs and makes recommendations to support discharge to or continued care in the community. A C(E)TR involves a meeting bringing together those responsible for commissioning and providing services (including nurses. social workers, local authority representatives and other health and social care commissioners/providers) with independent clinical opinion and those with lived experience of learning disabilities and/or autism.

C(E)TRs take place in community as well as in-patient settings and, whilst they are led by NHS England, they involve local authorities and education services in the review process and its outcomes for improving care. C(E)TRs should take place every 6 months for people in non-secure hospitals; every 12 months for people in secure hospitals; every 3 months for children and young people in hospital. Following an admission to a hospital setting, C(E)TRs should take place within 4 weeks of admission for adults and within 2 weeks of admission for children. A request for a C(E)TR can also be made at any point by individuals, their families and by commissioners and health and social care professionals involved in an individual's care.

There may be cases in which it is not practical to safely hold a community C(E)TR, for example when an urgent admission is being considered for which there was no prior knowledge of escalating risk. In these instances an urgent discussion with key individuals in clinical teams, commissioners and senior health and social service managers is held, this is not a C(E)TR and is sometimes referred to as a ‘blue light meeting’.

Existing evidence of C(E)TR effectiveness

Despite C(E)TRs being in place since 2015, very little is known about how they are working and what conditions are required to support their effective implementation and delivery.

Concerns have been raised publicly in some quarters about the value of C(E)TRs in reducing admissions and avoiding lengthy inpatient stays.

Evidence from a Care Quality Commission review looking at the use of restrictive practices in hospital and social care settings found that some people did not have Care (Education) and Treatment Reviews or that, where these were in place, they were not always effective and with recommendations sometimes not followed through. Data from NHS Digital, Assuring Transformation Dataset indicates that at the end of June 2022, the total number of people with a learning disability and/or autistic people in hospital was 2,005, including 205 under 18s. Over half (1,115) have been admitted for over 2 years and over a third of inpatients (35%) last had a review of their care over 6 months ago and 6% had not had any form of C(E)TR.

According to a survey commissioned by NHS England and carried out by Pathways Associates in the North East of England, Care and Treatment Reviews (reviews involving children were not included) were viewed positively by people with learning disabilities and their families with regards to making them feel more involved in decisions about their care, but there was also room for improvement noted by clinicians and experts e.g. representation of certain professions/groups at meetings and reducing the complexity of language and documentation used within the meetings. The Public Accounts Committee review of C(E)TRs concluded that these reviews were not working as they should and raised additional concerns about who attends the review meetings.

Finally, research conducted by Head and colleagues in 2018 highlighted the importance of understanding individual and family experiences of moving from hospital care into the community and the implications for staff working to support positive transitions of care. There is limited evidence on how C(E)TRs specifically are experienced from the perspective of diverse groups of people with learning disabilities and/or autistic people and their families to inform best practice and evaluate what works best for whom.

How services are delivered may vary dependent on local needs, populations, geographies and existing services, therefore, evidence is needed on innovative service models to support the delivery of the core function areas. Whilst not specifically focussing on C(E)TRs, it has been highlighted in NICE guidelines (NG93) that evidence is required on how person-centred support is delivered and the effective components of integrated regional services, including pooling budgets and other resources.

Relevant publications

Please note, this is not an exhaustive list, applicants are expected to ensure research proposals do not duplicate or significantly overlap with other ongoing or published research.

NIHR studies

Other studies