How do you think Transforming Care has changed things for people with a learning disability, autism or both?
The Joint Improvement Programme (JIP) was set up after the Panorama programme in May 2011 which documented the awful circumstances in Winterbourne View. In Surrey during this time we discharged several individuals from hospital and set up systems and processes to provide high quality care and support to people in the community.
Transforming Care followed on from that good work and put the focus very much on all the people remaining in hospital, and in moving them into the community.
If you took it in its purest form, the debate after Winterbourne View was about people having a good quality of life and living without fear. Transforming Care, however, identified that people aren’t even living in the right place, and if you’re not living in the right place it’s almost impossible to have a good life and form positive relationships.
It clarified who we’re helping, which I don’t think people really understood before Transforming Care. We’ve tended to focus on people with a profound learning disability and challenging behaviours and that’s such an important group, but we’re also talking about people with ministry of justice orders, with mental health problems, people with a mild learning disability but with risky behaviours and people with autism and behaviours that challenge.
If there are 2,500 people in hospital there are 2,500 solutions; that’s the complexity of the programme.
Has Transforming Care bought about a change of mindset?
I think so. What Transforming Care has done is focus on the most isolated group: the people ‘lost’ in hospitals. It’s helped us remember the forgotten, and made us focus on why they were forgotten. The change in mind set is that people should be in their communities.
How have you approached Transforming Care in Surrey?
Transforming Care is part of Surrey’s wider learning disability and autism strategy, so it’s not seen as something separate. We decided that to deliver the changes required we needed two SROs of equal standing: one from the CCG and one from the local authority. Our partnership board is co-chaired by somebody with a learning disability and the Transforming care Partnership (TCP) is a workstream of the partnership board. We also have a learning disability collaborative across the six CCGs in Surrey, with one lead CCG.
And what have you achieved?
In Surrey we didn’t have large numbers of people in hospital so our focus is on how we improve the quality of life for people, including those who live in residential services a long way from home. And in doing so we won’t need so many hospital places. I think we can demonstrate that we’ve supported people to move out of hospital, reduced admissions and returned people closer to home.
We’ve changed the rehabilitation service from being a bed-based service to a community support service and we’ve also relocated our assessment and treatment unit into the community. We closed it for five weeks while it moved and in those five weeks we didn’t have a single admission and nobody went out of area.
I was recently at Surrey TCP and I was really impressed with all the progress we heard about. Since Winterbourne View we’ve discharged 69 people from hospital, including 15 in the last year.
At the Partnership Board we heard from an excellent post-19 group that are keeping people out of the criminal justice system and giving them a place to go, where they can connect and get training and skills.
A group of young people in transition told us about a new project that keeps them living safely in the community, where they have friends and work experience opportunities.
We have also had a complete review of liaison services, who work across the GP and acute hospital services, with a greater focus on annual health checks.
But we’ve still got gaps and we’ve still got people in hospital and residential care out of county all of whom have recently been reviewed. Success will be when everyone is in the community and we don’t need to use the inpatient beds.
How are you working to resettle people who are in hospital?
Surrey has set up a provider consortia which works with the health care planners, the local community health and social care services. The consortia has ensured that every person in hospital has now had an assessment through a single assessment process and we’ve mapped what each person needs and wants.
Every Monday we have a dynamic process meeting with health, social care and providers to look at who needs support and how we can support them. We look at what each individual person needs, and then pull that together and look at it strategically.
Are there any individual stories that have particularly resonated with you?
One young man with extremely complex needs is now living a mile away from his mum and dad, where before he was over a hundred miles away. He’d been away for a long time and before he moved his care staff had to wear protective clothing, which his new staff no longer need. We worked with his family to create a really good outcome for him, which involved two providers working together to deliver the best service possible for him. Originally it was going to be temporary, but it’s worked so well that it won’t be temporary and he’s been there about six months now. He’s got his own home now.
There are many other individual stories that we heard about at the Surrey Transforming care one year on event.
How have you worked with providers?
We’ve asked the providers to do things differently. We’re lucky because we haven’t got big hospitals and we’ve got providers that work well with us. But the right support might not just be one provider, so in some instances we have a core provider and another one providing other activities or parts of the care. It’s not so much about new services, it’s more about new ways of working.
How can you help people to be a real part of their community once they move home?
One thing we’re talking to providers about is how we taper the support a person gets when they come out of hospital, so you don’t have the initial high costs forever where it is not appropriate, but is provided to meet individual outcomes. We’re looking at how you can support the individual to develop.
We want to build on the person’s own assets and strengths, and look at ‘what can they give to the community?’ If we’re working with a young person coming out of school, what do other 18 year olds want to do? They go to college, they learn skills. So one of the colleges in Guildford has set up a new part of their campus, which helps people who have more complex and challenging needs to develop their skills.
What do people between the age of 25 and 64 do? They go to work. So how can we support people to do the closest thing to work that they can do? Because when you go to work you make friends and you build relationships.
I say ‘as close to work as possible,’ because for some people that might just be a short period of time. I work with one young man who does shredding for half an hour a week. He does have complex and challenging needs, but he goes into the workplace, he does something useful, he meets people and he enjoys socialising with coffee and cake at the end of it. That’s what it’s about.
We’ve also started looking at time banking, which is asking ‘what can people with a learning disability do for their community?’ So if someone is sociable and can make a cup of tea, can they go and make cups of tea at Age Concern? Or if people like animals, can they be supported to take the neighbour’s dog for a walk? This applies to all people with a disability, not just that fall into the Transforming Care description.
What’s the biggest challenge for you at the moment?
We haven’t yet got a pooled budget. We’ve got good relationships across the TCP and people are working together well but we still have separate budgets, and separate commissioning arrangements. So we’re trying to align our commissioning.
We are very clear, however, that the finance doesn’t prevent somebody receiving the support they need. The laws are the framework – we’ve got duties, and we’ve got to respond to those.
What do you think, looking back on the journey and the progress you’ve made?
My biggest reflection is to remember that there’s lots of really good stuff out there. When we made the LGA empowerment videos recently, it was just amazing listening to the stories of people who had been in hospital for 14/15 years. There are dozens of stories, from every TCP.
What advice do you have for other TCPs?
I think it’s about going back to: ‘what does a good life look like?’ and ‘what is our wider strategy for people with a learning disability and autism, and how do we make that work for the most complex people?’
We sometimes focus on the wrong thing. If we focus on getting people out of hospital, we miss out ‘are they living a good life?’ If we focus on our communities to make sure everyone has a good life, then people won’t need to live in hospital. It’s about people having a good life in the right place at the right time and if we do that, then we can deliver Transforming Care.
It’s been difficult at times, and will be equally difficult in the future. But I want to let everyone know that all the work is worth it.