A recent research project by the University of Birmingham and rights-based organisation Changing Our Lives sought to better understand the experiences of people with learning disabilities and/or autistic people in ‘long-stay’ hospital settings, and the challenges they face when trying to leave.
Around 2,000 people with learning disabilities and/or autism are currently in ‘long-stay’ hospital settings. Over half have been there for more than 2 years, including 350 people who have been in hospital for more than 10 years. Unfortunately, many people spend longer than necessary in hospital.
The report ‘Why are we stuck in hospital?’ set out its findings and makes helpful suggestions to improve people’s experience in such settings. For me the key message is the importance of making sure the person has the right care and support.
Among the recommendations made by TLAP in response to this research is the use of Care (education) and treatment reviews (C(E)TRs). These form part of NHS England’s commitment to transforming services for people of all ages with learning disabilities and/or autism. The reviews are done to ensure that only those who really need to be there are admitted to a mental health hospital, they also aim to improve the quality of care for people already in hospital and to reduce the length of time they spend there or to stop people going in to begin with.
As part of one of the teams carrying out these reviews, I feel the launch of this report is an opportunity to shine a light on the importance of C(E)TRs. I work on these reviews as an expert by experience, alongside a commissioner and a clinical expert.
The focus of the C(E)TRs is to check that people are receiving the right care and treatment for them. This includes making sure the person’s care is safe, and that they have a discharge plan in place. A good discharge plan and smooth transition from hospital to community life can make all the difference to someone’s quality of life when returning to their community. They can also be used to stop someone with a learning disability and or autism from going into an assessment and treatment unit.
The care and education and treatment review, or care and treatment review, team will come up with recommendations based on what they have seen and read. It is essential to take the time to speak to the person and or family especially if the person isn’t well enough to take part. This is to listen to any concerns or questions they have. From my experience, often people can find it easier to talk with an expert by experience. Going through this person-centred process makes it even more important to me that the recommendations are acted upon.
The expert by experience can be supported in the role if this is needed, which in my area, comes from a local self-advocacy group or the North West Training and Development Team / Pathways Associates.
C(E)TRs are a key part of making sure that people receive the best care, treatment and discharge possible, so it’s important that the workforce and people going into hospital know what they are about. The NHS has produced some useful booklets explaining the reviews, and the Why are we stuck in hospital? report also includes videos and guides based on the University of Birmingham and Changing Our Lives research on ‘long-stay’ hospital visits.
Through my work as an expert by experience, I have learned that using my knowledge of my disability and my understanding of the health and care system to help others is a good and important thing to do.
