Scope
The Health and Social Care Delivery Research (HSDR) Programme is inviting applications to better understand the use, delivery and impact of Care (Education) and Treatment reviews (C(E)TRs) for adults and children with learning disabilities and/or autistic people. The research funded will be intended to improve how C(E)TRs are working and understand more about what conditions are required to support their effective implementation and delivery in hospital and community settings.
Background
A series of policies and guidance, notably the NHS Long Term Plan; ‘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 for people with learning disabilities and/or autistic people who are admitted, or at risk of admission, to inpatient hospital settings. An action plan of BtRS has 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 going forward. As part of BtRS, Care and Treatment Reviews (CTRs) for adults were introduced by NHS England in 2015. For children and young people, they are called Care, Education and Treatment Reviews (CETR). Unless otherwise stated, we use the term ‘C(E)TR’ to refer to both types of review throughout this document.
A C(E)TR is a meeting bringing together those responsible for commissioning and providing services (including nurses, social workers, local authority representatives, such as from housing and education, and health and social care commissioners) together with independent clinical opinion and those with lived experience of learning disabilities and/or autism, which includes people with a learning disability and/or autistic people and their family carers.
The aim of a C(E)TR is to check that a person who is either at risk of being admitted or who has already been admitted to a hospital setting is receiving appropriate care that meets their individual needs and that, where possible, challenges are overcome to support discharge to or continued care in the community.
Identified research need
Despite C(E)TRs being in place since 2015, very little is known about their impact, how they are working and what conditions are required to support their effective implementation and delivery. 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 a learning disability and their families with regards to making them more involved in decisions about their care but there was also room for improvement noted by clinicians, e.g. representation of certain professions/groups at meetings and reducing the complexity of language and documentation used within the meetings. Baroness Hollins’ thematic review of Independent Care (Education) and Treatment Reviews (IC(E)TRs) was undertaken to identify common concerns and issues relating to the care and treatment of people with learning disabilities and/or autistic people in long-term segregation. As part of this programme of work it revealed that while there are some examples of good clinical practice in how C(E)TRs were conducted, these were rare and considerable variation exists. Findings from CQC “Monitoring the Mental Health Act in 2020/21” report includes further detail of the findings from Baroness Hollins’ review, including evidence of poor C(E)TR reports with few recommendations, and many examples of providers ignoring recommendations made in previous C(E)TRs.
Evidence is needed to improve the quality of care for people with learning disabilities and/or autistic people living in the community and staying in long stay inpatient settings, reducing the amount of time people spend in inpatient settings and to support people to live in the community with the right support, access to education, and close to home. Given the important role C(E)TRs play in health and social care services and proposals to place them on a statutory footing, HSDR Stakeholders prioritised this as an important area for further research to evaluate their use and inform their future delivery.
This research will complement ongoing work funded by the NIHR HSDR Programme, for example to understand experiences of people with learning disability and/or autistic people delayed in leaving long-stay institutions and on community services for children with learning disabilities and behaviour which challenges. New work should build on and complement these and other relevant studies in the area (see supporting information for links to NIHR projects).
Areas of Interest
The HSDR Programme is interested in receiving well designed research studies, with strong theoretical grounding (where appropriate) to strengthen the evidence base on the effectiveness and impact of C(E)TRs. Studies should generate national learning, so small-scale or single site service evaluations will not be supported. C(E)TRs taking place in community and/or inpatient settings with adults and/or children with a learning disability and/or autistic people are all within scope for research proposals submitted to this call.
Please note that Independant Care (Education) and Treatment Reviews (IC(E)TRs) are different to C(E)TRS and are out of scope for applications to this funding call.
The Programme is not prescriptive about methods, but we would expect significant engagement with people with learning disabilities and/or autistic people, their families and health and social care professionals in proposals which might include participatory and co-production methods. Any proposal meeting the scope of the brief and remit of the HSDR Programme will be considered, but some specific areas of interest have been identified:
- How are C(E)TRs experienced from the perspective of those whose care is under review, and their family carers, and how can it be improved in all settings where they are carried out? Including those from diverse groups, e.g. those with different cognitive abilities, children and adults of different ages or from different ethnic groups.
- What are the experiences of the panel members (e.g. Chairs, Clinical Experts and Experts by Experience) and the range of health, social care and education professionals involved in supporting and inputting into C(E)TRs and how can it be improved?
- Understanding and testing C(E)TRs as a complex intervention, including evaluating short- and longer-term outcomes, costs and unintended adverse effects: What works for whom, when and how?
- What is the relationship of the C(E)TR process on the person under review, family wellbeing, care and treatment? Including impact measures such as quality of discharge planning, length of stay and avoidable admissions and developing blueprints for further impact evaluation (such as longer-term outcomes)?
- How effective are C(E)TRs in comparison to other types of review approaches used to support care planning in other contexts, e.g. family group conferencing, care programme approach, child protection conferences? What is their unique contribution, i.e. outcomes which would not have happened without the review?
- How are C(E)TRs carried out in practice? What variation exists within and between services with regards to who attends (roles and representation from different agencies) processes and outcomes? What lessons can be learned to inform best practice? Such as;
- What is the optimal way to involve “experts by experience” on panels, e.g. people with learning disabilities and/or autistic people and family carers - are there strengths of particular approaches to include people – how does this work well within the constraints of existing infrastructure (e.g. challenges setting up payments for people on NHS systems)?
- What points in the process are empowering or offer opportunities to be empowering for people with learning disabilities and/or autistic people and their families and what points constrain this?
- What is the best way to engage children and young people with learning disabilities and/or autistic children to facilitate their involvement and input into C(E)TRs?
- What is the impact of variation in the panel conducting C(E)TRs (in terms of how they are recruited, trained, co-ordinated and skill mix) on review outcomes, experiences and implementation of care and support?
- How is communication and implementation of recommendations following a C(E)TR delivered? How is accountability and follow through to the commissioning processes for enacting recommendations monitored and achieved?
Equality, diversity and inclusion
The NIHR is committed to actively and openly supporting and promoting equality, diversity and inclusion (EDI). All NIHR research proposals need to demonstrate that they have met the requirements of the Equality Act (2010) by embedding EDI throughout their research study, ensuring that there is no discrimination across the following domains: age; disability; race (including colour, nationality, ethnic or national origin); religion or belief; sex; sexual orientation; gender reassignment; being married or in a civil partnership; and being pregnant or on maternity leave. Applicants are expected to pay attention to populations that have been underserved, to conduct research in locations where the need is greatest, and to promote the inclusion of diverse participants.
General guidance
The HSDR Programme supports applied research with the aim of improving both health and social care services across the nation and is open to any appropriate methodological approaches to answer the proposed research question(s); the approach must be fully explained and justified. In order to enhance the success of a research proposal, a clear theory of change and pathway to impact, with links into the NHS and social care services delivery, is suggested. It is useful to consider in the research study design how outcomes could be scaled up to maximise impact and value for money across the NHS and social care services – the focus is on applied research with tangible impacts that improve the quality and organisation of health and social care services. This includes stakeholder engagement and the development of processes, tools and guidelines to strengthen workforce capacity.
Research proposals should be co-produced with national organisations, professional bodies, health and social care service professionals, and service users. Links with health and social care planners and professional bodies are required to ensure impact and scaling up of research findings to benefit the wider health and social care system.
The COVID-19 pandemic is having a significant impact across the health and social care system. As this research may be conducted during the COVID-19 response and recovery period, applicants should consider how the impact of the COVID-19 response and recovery may affect the deliverability of their research.