Inside View: Care and Treatment reviews

I became involved in the Transforming Care, Care and Treatment Review (CTR) programme after my son was admitted to an Assessment and Treatment Unit (ATU) following a provider takeover and subsequent placement breakdown. At that time the outlook was pretty bleak for us. My son had been admitted to an ATU, an 8 hour drive from home, and while everyone in the local team appeared committed to setting up a community package it felt (and indeed was) a very long process to bring him back to his and our home town. The CTR, held soon after admission, felt like a positive step towards starting the process of getting my son home.

Care and Treatment Reviews are held to try and prevent hospital admission for autistic people and people with learning disabilities, or to look at barriers to getting people out of hospital and back into the community. They also check whether someone is receiving safe, appropriate care, look at whether there is a plan in place for the future and consider whether someone needs to be in hospital at all. It takes place over a day when a panel of three, consisting of a Chair or Commissioner, a Clinical Reviewer and an Expert by Experience, look over the person’s notes and talk to the team providing the care as well as other important people in the person’s life. The day is organised in a flexible way and every effort is taken to ensure that the person themselves can contribute their views and opinions in a way in which they feel comfortable. At the end of the day the panel agree on recommendations to feed back to the care team.

I was asked to consider putting myself forward as an Expert by Experience by the chair of my son’s CTR panel. The Expert by Experience is, along with the Clinical Reviewer, independent and our role is to challenge the providers, the clinical team and anyone else that needs challenging, including the commissioner if necessary.

I had found the CTR experience to be one where the focus was entirely on my son and his needs and therefore was happy to apply. Once selected, training from NDTi soon followed. This was a helpful, confidence building day. I found it affirming to be in a room with people with the same values and, as a parent, it was reassuring to discover that there are professionals with the same vision. I have found the ongoing support provided by NDTi to be invaluable. Workshops and webinars have been held on a variety of topics from Education and Health Care Plans to Mindfulness. NDTi’s support team are available to deal with any queries or provide support.

My experience of sitting on the other side of the table has been as positive as my experience of being a parent invited to a CTR. I have found panels to work collaboratively to make positive changes. Our focus during the day is on the person and their needs and it is rewarding when you can see that changes will follow. Sometimes these can be small changes, for example ensuring a person can engage in a long term hobby while in hospital. On other occasions, a panel member may be able to provide information or have contacts that can support the provider in better meeting someone’s needs. CTRs are meant be constructive experiences and, to date, I have found that the panel’s input has been welcomed.

The future of the Transforming Care Programme and CTRs is currently uncertain. Writing from the joint perspective of a parent and a panel member I believe cutting or watering down the CTR programme would be unwise. It is still the case that far too many people with learning disabilities and/or autism are in hospital when they do not need to be there. Having been involved in ‘the system’ since my son was two years old, this focus, where an entire day can be spent thinking about one person, is unusual and, in my opinion, this is one of the main strengths of CTRs. Getting people out of hospital is a complex process and CTRs provide the time to identify and challenge the obstacles that are preventing people from living in their own home either now or in the future. They are not the whole answer to the problem, but they are certainly part of the solution.