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Care and Treatment Reviews – working out together what a good life should look like

Care and Treatment Reviews (CTRs) are part of NHS England’s commitment to transforming services for people with learning disabilities, autism or both. CTRs are for people whose behaviour is seen as challenging and/or for people with a mental health condition. They are used by commissioners for people living in the community and in learning disability and mental health hospitals. Pete Crane explains how they work in practice.

I have been involved in lots of CTRs over the last few years – my role is to act as the ‘expert by experience’ on the CTR panel. The CTR panel usually consists of three people – the CTR chair (who is often a professional involved in paying the bill for the hospital placement we are reviewing) – a ‘clinical expert’ (who has a professional background working in the areas covered by the CTR) and the ‘expert by experience’.

My background is being a proud dad to a happy son who is living a good life in my local community, my son has lots of labels but if anyone really pushes me to use a label then ‘PMLD’ is usually my choice. PMLD is now slightly old fashioned I think – but my son will be 35 this year so it is a term we are used to.

PMLD means Profound and Multiple Learning Disability, in the bad old days that would have instantly qualified my son for a ‘hospital’ placement – but luckily for us we were involved in networks of good support that have led to my son now having his own house (with a mortgage in his name), a paid job and lots of activities and friends – all enabled by a great Local Authority direct payments package which funds his 24/7 support team.

All of this family background led to me being asked to attend CTR as an ‘expert by experience’ – the work is arranged and co-ordinated for me by my friends at Pathways who are based in Accrington.

I have found the process to be really good in many ways. A good one is an inclusive and honest sharing of knowledge and information by everyone involved – all with the aim of working out together what a good life should look like for the person whose CTR it is – and then sorting out the real world practicalities of making that good life happen.

Although my job title starts with that word ‘expert’ – I am always very aware of the gaps in my knowledge and try really hard to always be respectful to everyone I meet during a CTR. I go back to the idea that it should be a great way for everyone to share knowledge and information in a respectful way – and usually a consensus emerges that is agreed by the person, the family and/or advocate, and the professional team as the best way forward.

A good CTR will always be led by the chair who will lead us through the questions on the NHS CTR form and enable discussion and debate – sometimes the panel will together agree on ‘recommendations’ which we expect to be actioned. The NHS has found the CTR process to be useful – and if a person with learning disabilities and/or autism is in hospital then a CTR is meant to happen every six months. This is a really good idea because it allows the recommendations from the last CTR to be the starting off point for the current CTR – and good things happen. I think that the CTR process works and it is a great way for me to share my knowledge.

Earlier this year NHS England reviewed and updated the CTR policy and toolkit, including an Easy Read version of the policy. A new online learning resource about CTRs is coming soon, as well as an updated CTR Key Lines of Enquiry (KLOES) template and accompanying easy to read workbooks.

The workbooks help CTR panels to use the KLOEs. They show what sort of questions to ask and where to find evidence, and will help with deciding what goes into the CTR report. The template is designed to help write a report – it draws through areas of concern that have been highlighted and pre-populates the person-centred action plan. View all of these materials and please let us know what you think england.learning.disability@nhs.net.

Pete Crane

Pete is a 63 year old grandad who is now retired following many years working as a bank cashier.

Pete is married to Wendy and together they have raised son and daughter Nick and Sarah – both Nick and Sarah have good lives, friends, jobs and mortgages – but Nick has been profoundly learning disabled since birth.

Pete has always regarded both his children as having equal civil rights – equal needs for love and respect – and being equally important to him.

Pete would always ‘swap the labels’ in order to work out what a good life should look like – for example “would I put my 6 year old daughter alone on a bus and send her 20 miles away each day to school ? – no ! – so why would I do that to my son Nick – therefore he should go to a local school like his sister would.”

As Nick’s parents for 35 years, Pete and Wendy have been involved in many ways with the positive changes that have been taking place in civil society for people with a learning disability – most notably Pete was the chair of the national charity IPSEA for many years and in this role gave evidence to both the House of Lords and the House of Commons on various disability related matters.

Following the events at Winterbourne View, Pete was involved as an ‘expert by experience’ in the Care Quality Commission inspections of Assessment and Treatment Centres for people with a learning disability and/or autism.

Recently Pete has been working as an ‘expert by experience’ involved in the NHS CTR program – this is managed and enabled by NWTDT (North West Training and Development Team) / Pathways, an organisation based in Accrington that has various networks and work streams all designed to improve the lives of people and families living with learning disability and/or autism. Pathways is working hard to capture and share the knowledge that self-advocates, families and professionals all have in order to enable civil society to welcome and include people with learning disabilities and/or autism – and at the same time allow us all to benefit from the gifts and talents that everyone has.

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  1. Jean Waldron says:

    It was not until I the read the guidelines about when a CTR should be completed after admission that I realized the policy had been ignored. It was only when I protested that a CTR was done months after admission and the minutes took a further 2 months to appear after countless requests. Excuse for not holding the initial CTR was not enough staff. !!