Learning Disabilities: Good Practice Project

I had the pleasure of hosting an event in April 2013 when people with learning disabilities, family carers and colleagues from the Local Government Association, the Association of Directors of Adult Social Services, Think Local Act Personal and the Joint Improvement Programme, set up under Transforming Care, came together to celebrate good practice from across the country.

My particular thanks go to the excellent team of ‘checkers’ – people with learning disabilities, family carers and key stakeholders – who visited six services selected by people with learning disabilities and family carers as being the best from over 80 examples of good practice covering health, social care and public health provided in response to my request in November 2012.

The whole project began over 12 months ago when the National Valuing Families Forum and the National Forum of People with Learning Disabilities, who attend the Learning Disability Programme Board, were challenged to find examples of services that improved the health and lives of people with learning disabilities. They looked for services that met key indicators of excellence including a move towards integrated services, a commitment to personalisation, community capacity building and a capabilities approach to disability focussing on people’s strengths. Above all, they looked for examples of co-production where people who use services are involved in planning and in some cases delivering them.

The project itself serves as a shining example of co-production. It shows what happens when a Government Department puts people with learning disabilities and family carers in the driving seat to identify what they think is good practice. The results were extraordinary. The six projects that were presented, following visits by pairs of ‘checkers’ were diverse, inspiring and demonstrate what is possible and what good looks like.

The working group overseeing the project and led by Jo Hough from the NVFF and Kerry Martin from the National Forum had the immense task of considering over 80 separate examples and deciding which best fit the key indicators. What was sobering and equally information was the number of services put forward that, from the paperwork provided, did little more than meet minimum standards and in some cases illustrated the less good in terms of lack of person centredness and adherence to out-of-date models of care.

But the good practice was very good indeed. In Gloucestershire we heard how people with learning disabilities, trained as quality checkers, visit care homes, including at night time, and point out simple practical things to improve people’s lives. They witness at first hand what life is like for people living in the homes and, from their experience, what will make people’s lives better.

From Norfolk, we heard about good work improving access to public health. We know that people with learning disabilities have worse health care and die earlier than others. This project helps in our understanding of bringing good health outcomes to everyone.

In Hackney, I was really interested to hear about a project that enables shared ownership and we have included here details about how it can work. It was inspiring to hear how someone’s life was transformed as a result of having her own flat and choosing how she wants to live day to day. This does not have to be a one off example. We want to see it replicated across the country.

The checkers visited a project in Oxfordshire designed to provide supported living for young people who would otherwise be in secure services. It was very encouraging to see how this worked in practice. It is central to the work coming out of Transforming Care – demonstrating how people moving from institutional care can have quality of life with independent supported living. Both providers and commissioners play a crucial role in making this happen.

A project from the Open University showed how drawing up individual Life Maps gives a better understanding of how people with learning disabilities have lived their lives. It can result in improved support from families as people grow older. The project also reported on the life and work of Mabel Cooper, who sadly died before the checkers could meet her. Mabel visited primary schools to talk about her life, including her years spent in an old long stay institution. She was passionate about communicating her life story and breaking down barriers to understanding people with learning disabilities.

Finally, from Merseyside we learnt about innovative approaches to meeting the health needs of people with a learning disability who have dementia. It demonstrated great practice with much to learn from the relatively simple things that can make an immense difference to people’s lives.

One of the aims of the whole project has been to spread good practice and we hope that this report will be widely read and that commissioners and providers as well as people who use services and their families and carers will want to find out more. We have included the 20 projects that reached our long list with brief descriptions and contact details.

The project has also shown us that there is much to do in bringing every area up to the standard of the very best. This is the challenge that we face working through the Joint Improvement Programme to improve people’s lives locally.

Transforming Care: A national response to Winterbourne View Hospital – the Department of Health Review Final Report, says that by June 2013 everyone in NHS funded care will have care plans. Putting these plans into action, by June 2014, everyone inappropriately in NHS inpatient services will move to community based housing.want to broadcast success stories but also let the public know when this isn’t happening

It is a national imperative to transform how people with learning disabilities receive care and support and to put them at the very centre of service design, development and delivery. We have seen how this can be done through the examples in the good practice project. This has all been about giving people good lives, not institutional care, built on strong local leadership and co-production. I am determined to bring change to every area across the country.