Care and Treatment Reviews: Are They Working for Individuals with Learning Disabilities and Autism?
Care and Treatment Reviews were introduced in 2014 as part of a broader effort to improve the care of people with learning disabilities and/or autism, particularly those detained in mental health hospitals. The aim was to ensure that the right care, in the right setting, is provided and that people with additional needs who don’t need to be in hospital are given the support they need to remain in their communities.
However, ten years since the introduction of Care and Treatment Reviews one crucial question still remains – Are they working?
The Purpose of Care and Treatment Reviews
Care and Treatment Reviews (for adults) and Care and (Education) Reviews (for children and young people) focus on several key questions:
Is the person safe?
What is their current care like?
What is their day to day and overall quality of life like?
Are their physical health needs being met?
Is there a plan for their future?
Do they need to be in hospital for their care and treatment?
The goal is to ensure that people who don’t need to be in hospital are not detained unnecessarily, and that those in hospital are being treated appropriately, with clear plans for timely discharge and access to person-centred and comprehensive support in the community.
Are Care and Treatment Reviews Working?
Despite their goals of ensuring equality in healthcare and protecting the interests of people with learning disabilities and/or autism, the effectiveness of Care and Treatment Reviews has been questioned. Key concerns include:
Slow Progress on Discharges: Despite numerous reviews, the numbers of individuals discharged from hospital after Care and Treatment Reviews remains disappointingly low. For example, a report from NHS England in August 2023 revealed that, out of 62 individuals who underwent a Care and Treatment Review, only three were discharged. This raises further questions about whether Care and Treatment Reviews are making a meaningful impact on patient outcomes.
Tick-Box Exercise: Many professionals have voiced concerns that Care and Treatment Reviews are seen as administrative tasks rather than meaningful interventions. There is a growing concern that the process involves filling out forms and ticking boxes without leading to any tangible care-related improvements.
Lack of Accountability: Recommendations from Care and Treatment Reviews often go unimplemented, resulting in continued experience of poor care and unnecessary hospital detentions for the people they were intended to support.
Insufficient Care Coordination: Although Care and Treatment Reviews are intended to improve coordination between professionals, in many cases, poor communication and siloed working across services mean that opportunities for early intervention or changes to care are missed. As a result, some people continue to be detained longer than necessary.
Advocacy Group Frustration: Some organisations are so frustrated with the process that they have withdrawn from it altogether. In 2023, the learning disability charity My Life My Choice (MLMC) withdrew from the Care and Treatment Review programme, labelling it “a waste of time” and criticising its failure to prevent further unnecessary detentions of people who could be living in community settings if provided with the right support.
Understanding Waste in the NHS: A Systemic Issue
The issues with Care and Treatment Reviews should also be viewed in the broader context of waste in the NHS. According to the Bevan Commission 1, waste in healthcare isn’t just about financial inefficiency; it’s a multi-faceted problem involving:
Overtreatment
Failures in care coordination
Failures in executing care processes
Administrative complexity
Pricing failures
Fraud and abuse
Care and Treatment Reviews are heavily reliant on efficient coordination. Poor communication between teams can therefore lead to missed opportunities for early intervention, longer hospital stays, and preventable adverse events. Additionally, failures in executing care processes – such as mistakes, omissions, or errors – can delay actions and waste valuable time for both patients and healthcare staff.
Moreover, neglecting to include the views and perspectives of patients and their families throughout the care process can also result in slow, inefficient support, and less-than-optimal outcomes.
1 Bevan Commission. (n.d.). What a Waste. Retrieved from https://bevancommission.org/what-a-waste/
How Positive Support Group (PSG) Makes a Difference
Active Patient and Family Participation: Patients and their families are encouraged to actively participate in the Care and Treatment Review process. This means that they are not just being consulted but have an active say in decisions about the care, treatment, and future plans being discussed. Should they be unable to attend the review, this may involve a telephone call to a family member or a home visit.
Focus on Community-Based Alternatives: One of the key issues with hospital detention is the lack of adequate community-based services and support. PSG have extensive experience supporting people with complex needs in the community and consequently understand the requirements of holistic, person-centred and effective community support.
Consistent Panel Reviewers: PSG ensures the same staff member attends reviews to maintain consistency and leverage their knowledge of the individual and their system.
Outcome Tracking: PSG follows up on outstanding actions from previous Care and Treatment Reviews to monitor progress and ensure continued development.
Accessible Information: PSG presents information about the Care and Treatment Review process, care plans, and treatment options in clear, accessible formats, including easy-to-read materials, interpreters, and alternative communication methods to ensure full understanding and participation.
Free Training for Families and Carers: PSG offers free training to families and carers on the Care and Treatment Review process and their rights, empowering them to advocate effectively for their loved ones.
Raising Awareness: PSG works to raise awareness within the wider health system, including hospitals and trusts, to improve understanding of the Care and Treatment Review process and associated co-production and coordination-related factors that are crucial for success.
Still, there is more to do:
Stronger Oversight and Accountability: A mechanism to ensure that actions agreed upon during Care and Treatment Reviews are followed through and that there are real consequences for inaction needs to be in place. Without this, Care and Treatment Reviews risk becoming another process that produces reports but no results.
Improved Care Coordination: Care and Treatment Reviews need to focus on breaking down barriers between services and improving communication among professionals. Effective care coordination is essential for preventing delays and ensuring that people receive timely interventions.
Accountability Partners: Assigning specific individuals or organisations (such as commissioners or care coordinators) to oversee the implementation of recommendations could ensure greater accountability.
Helping partners to deliver efficient, effective Reviews
While Care and Treatment Reviews were designed to improve care and quality of life for people with learning disabilities and/or autism, the system as it currently stands does not always deliver the outcomes our patients and their families need, which risks undermining the programme. To reduce waste and improve outcomes, we must ensure Care and Treatment Reviews are conducted more effectively. Increased accountability, better communication, and stronger patient involvement are all key to achieving meaningful change.
Positive Support Group urge those involved in the Care and Treatment Review process to carefully consider its effectiveness and join efforts to support initiatives that will bring real, lasting improvements to the care and lives of people with learning disabilities and autism. It’s time to make the system work for those it is meant to serve.
