Children, young people and adults with a learning disability and/or autism have the right to the same opportunities as anyone else to live satisfying and valued lives, and to be treated with dignity and respect.
They should have a home within their community, be able to develop and maintain relationships, and get the support they need to live healthy, safe and rewarding lives.
In Cheshire and Merseyside we have done much to make that vision a reality. But for a minority of children, young people and adults with a learning disability and/or autism who display behaviour that challenges, including those with a mental health condition, we remain too reliant on inpatient care.
Our Partnership is working to deliver the national plan, 'Building the Right Support', to make sure change happens. Part of Building the Right Support included the development of 48 Transforming Care Partnerships (TCPs) across England, of which we are one.
We are a Partnership made up of people who use services, parents and carers working with the NHS and local councils to help people live in homes, not hospitals and improve people’s health, quality of care and quality of life.
This will mean that fewer people in Cheshire and Merseyside will need to go into hospital for their care. To do this we are making sure that services in the community are better able to meet people's needs, particular those who might need additional support. For people who do need to go into hospital though we want to make sure that they are as close to where they live as possible.
Cheshire and Merseyside Transforming Care Partnership (TCP) is aiming to make change across the whole system to the way services for people with learning disabilities and/ or autism are delivered.
Our aims are to:
- Help people live in homes, not hospitals
- Improve people’s health, quality of care and quality of life
We are doing this by building more services in the community and focusing on getting the right support to people at the right time. We have a number of workstreams across Cheshire and Merseyside.
- Co-production, communication and engagement
- Children and Young People’s Servcies
- Adult Hospital and Community Services
- Housing and Care Provision
- Workforce and Education
Transforming care in action with the people who use services
Pathways Associates is a self-advocacy organisation based in the North West who provide a range of services to support people with learning disabilities and / or autism. As well as working with people and their families, the organisation works with the NHS, Local Authorities and Independent Care Sector. Their range of work includes
- Empowering self-advocates and families
- Training packages – learning and development
- Developing health and social care workforce
- Making information and events accessible
Pathways is supporting the Transforming Care Programme across the North West by providing opportunities for providers and commissioners to discuss issues with experts by experience in a range of ways – including regular local and regional contact forums and people who work alongside commissioners on workstreams.
The lead for the programme is Hazel Richards, Director of Nursing at NHS England, Cheshire and Merseyside.
Stephen's Story: Transforming Care in Action
Stephen (not his real name) has a Learning Disability, Autism, and Anxiety Disorder.
For the past 7 years, he had only left the family home for 30 minutes every 6 weeks to go to the barbers and for an hour on birthdays to go out for tea. His anxiety was such that, when he split his head open and needed medical attention, he was too anxious to leave his house to get it.
Last Autumn, Stephen began to physically attack his father and wouldn’t let his mother leave the house, with these incidents increasing. He lost a lot of weight, and diet was very poor. Rituals and routines escalated. The situation became very difficult for everyone and it was clear that this was a crisis.
During 2017/18, our Partnership invested in the development of an Intensive Support team within the existing Community Learning Disability Team that looks after Stephen, to reach out and treat people with more complex needs in the community, rather than bring them into hospital.
Intensive Support had the time and skills to treat Stephen’s high anxiety at home. The team were able to do more for Stephen, like health checks, in his own home so he didn’t need to attend a hospital and become more distressed.
There has been a lot of discussion about whether to admit Stephen under the Mental Health Act. But because of the greater level of support he now received, it was felt that he would get better more quickly at home.
It was agreed that, in the longer term, Stephen probably needed to move out of the family home to his own home with support from a dedicated team who had the right skills to meet his more complex needs. This had to be arranged carefully and slowly, so that Stephen knew the people involved and was confident about his life moving forward.
Intensive Support were able to support Stephen and his family with daily visits from Associate Practitioners and a Challenging Behaviour Nurse. Alongside this, the team introduced support staff from a new agency and provided in-depth support to build relationships with these new people who could help Stephen cope better and improve his daily life.
Working together, Stephen was gradually reintroduced to leaving the house, and he determined the pace and the locations in conjunction with his support team. His first outing was to join the local library. His second outing was to borrow a book about bridges from the library – bridges are his main interest. From this start, Stephen began to go out daily and even went to his GP practice to introduce himself to the receptionist he had previously never met.
Intensive Support provided urgent training to the new identified agency and Stephen moved out of home into a specific placement for people with Autistic Spectrum Conditions. This was done with full support of the Associate Practitioners and Challenging Behaviour nurse who had worked with him from the team. The team are still involved in his care.
Intensive Support helped Stephen move from being physically abusive to his parents and unable to leave his home, to being out and about and able to engage in a range of activities. Previously, a case like this would have meant a hospital inpatient stay which could be both lengthy and distressing. Due to the level of community support in place, Stephen didn’t have to access hospital at any point while he was unwell.
The Transforming Care team also produce a bi-monthly newsletter to keep self advocates, carers, families, stakeholders and other partners informed on the work happening across the programme.
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