Sharing their stories of care on Learning Disability Week

It’s just over 10 years since Winterbourne View and the families of some of the people who were there recently wrote to the Prime Minster in a letter with the subject line ‘Tea, Smiles and Empty Promises’.

Thousands of children and adults are still in inpatient units, and hundreds of them have been there since before that scandal. We know that people who have a learning disability also face huge inequalities in health, housing, employment, and safety.

In the face of these depressing statistics, we need to understand how we can make sure people can get good support, which we know is possible to achieve.

This year we have heard from two people who used a personal workforce budget in 2015 / 2016 through our PBS and autism training fund. They have each agreed we can share their story in the hope that others can benefit from their experiences.

Dean (not his real name)

Dean lives in his own home now but before this on his 18th birthday he was admitted to an assessment and treatment unit which was later the subject of a national scandal due to the abuse of people living there by some staff.

In that place he was deemed by staff too dangerous to use the kitchen, even with support, or to go out at all. When he was moving out in 2016, a professional worker there called out “see you in two weeks” having told Dean and his new support team that his discharge wouldn’t work.

Within weeks Dean was doing all his own cooking (with support from staff), seeing his family, and helping out on local allotments. This year he’s achieved his aim of visiting his family without staff and has just been signed off of his psychiatrist's case load.

This has been no fairy tale, there have been bumps along the way but Dean, his family, his social worker, his support provider, and the local community team were determined to work together, and to learn together with bespoke training; not just about the conditions affecting Dean but how they affected him as an individual and what that meant for the way they needed to work together. The key thing is that they built a trusting ‘no blame’ relationship, where each partner was respected and listened to and agreed in advance how they would all respond when the inevitable problems arose.

Paul

Paul's mum says several years ago he was being moved from service to service. He was communicating by his behaviour that he was unhappy. He was injuring himself and going to A&E, sometimes twice a day.

His current provider committed to help him improve his quality of life. Using the fund, they did some training together to help staff put themselves in Paul’s shoes psychologically and emotionally. This training is kept up-to-date and all new starters (who Paul helps to choose) do it. It helps staff have confidence to build relationships and enable Paul to use words to tell staff when he wants them to leave or when he’s feeling angry or frustrated.

Paul hasn’t been to hospital in months and that most recent visit was a planned blood test that went smoothly. He says he has lots of choice and wants to live in his home for the rest of his life. His Mum now feels more hopeful about the future.

Watch Paul's full video!

The people leading Paul and Dean’s services say what works is:

• external professionals recognising the skillset of social care providers and sharing the risk
• having funding available to work preventatively and having an adequate budget for staff development
• person-centred, cross-sector workforce development for person-centred care
• leadership not management
• multi-agency sign-up, good communication, equity in respect
• real co-production – commissioners engaging with providers, working alongside us to stimulate the market, recognise the leadership and management requirements, recruitment, retention, resilience, etc.

Our website has resources for support providers and commissioners to help with workforce development for supporting personal relationships, helping people with mental wellbeing, and specific topics like eye health.

Have a look at our learning disability and behaviours which challenge resources.

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