Research reveals the challenges for people with learning disabilities and/or autism trying to leave ‘long-stay’ hospitals

There are currently about 2,000 people with learning disabilities and/or autistic people in hospital at any one time. Over half have been there for more than 2 years, including 350 people who have been in hospital for more than 10 years.

The National Co-production Advisory Group (NCAG) welcome research from the University of Birmingham (opens new window) and rights based organisation Changing Our Lives (opens new window) which reveals the barriers people with learning disabilities and/or autistic people face to being discharged from ‘long-stay’ hospitals and living ordinary lives; Why are we stuck in hospital? (opens new window)

We are pleased that the research focused on the perspectives of the people who have lived through this experience, as well as their families, and advocates. These insights have too often been missed and are essential to finding solutions.

The research reveals that the main barriers to moving people out of hospital fall into the following areas:

• Seeing people as a collection of ‘labels’ and diagnoses, not as individual people.
• Different services and professions not sure who should be in charge.
• Massive delays in planning and co-ordinating who does what.
• The difficulty of linking up the criminal justice system with health and social care (where someone has committed a crime).
• An overly complicated treatment system which leads to people ‘jumping through hoops’ to try and leave hospital sooner.
• Staff in hospitals not always knowing what community-based care options are available.
• A lack of psychological support for those who may have experienced traumatic events in their past or during hospital stays.
• People falling through the cracks in the health and social care system.

This study brings to life how the decisions taken (or not taken) by people working in different agencies and organisations have profound negative impacts on people’s lives and their chances of getting the support they need at the right time in the right place. All of those working in the system need to think about the role and part they can play in ensuring people are properly supported through a human rights lens.

At its heart, reducing reliance on these forms of provision is about consciously and consistently adopting person-centred approaches throughout - with all the agencies and organisations working in true co-production with people and families.

It is essential that ensuring the right care, support and treatment is firmly based on a human rights approach that puts the needs, aspirations and wellbeing of people centre stage. This is what Making it Real does. It sets out what good personalised care and support looks like for people, and can and should help act as stimulus for action and improvement.

There needs to be urgency and importance attached to this agenda to regain the momentum necessary to secure lasting change.

What we would like to happen next:

• Leaders across health and care to concentrate on achieving progress, using Integrated Care Systems as an opportunity to bring all the key players together.
• Commissioners to have personal knowledge of who they are commissioning on behalf of; their circumstances, needs and wishes.
• Agreed ways for who pays for the care, support, and housing that people need to live good lives in the community. Joint commissioning is part of the answer.
• Improvements made to the environments of people of living in these settings, so they don’t add to people’s trauma
• Care (education) and Treatment Reviews C(E)TRs (opens new window)used to check that people are being appropriately cared for and treated. The review teams include an expert by experience, and they can also be a useful source of advice on future planning for a person.
• Harness what already exists, but where there are gaps commissioners should take the lead in creating what is needed.
• Greater use of tried and tested alternative housing models with care that are bespoke to a person, such as Shared Lives (opens new window)and home ownership through organisations like Advance (opens new window).

The role of self-directed support

The research did not find any examples of how personal budgets can be used to enable individually tailored support. We think that direct payments and individual service funds have an important role to play in supporting people to leave hospitals and in reducing the likelihood of needing these forms of intervention. In the coming months TLAP will highlight examples of where direct payments and individual service funds have been used to support personalised approaches which enable people to leave hospitals in a timely way with the support they need.

The research (opens new window) shines an important spotlight on an area where personalisation is too distant for too many. We hope that it will act as a catalyst to redouble efforts so that people with learning disabilities and/or autism have the right and opportunity to lead ordinary lives in ordinary places with the support they need.