People with learning disabilities and autistic people leaving long-stay hospitals
The Context
Although the UK decided to close ‘asylums’ for people with learning disabilities and autistic people from the 1960s onwards, there has been a growth in people admitted to ‘assessment and treatment units’. Widespread recognition has emerged that some people stay here for far too long, sometimes with little ‘assessment’ or ‘treatment’ that could not be provided elsewhere.
Other people with learning disabilities and autistic people live in secure units, mental health hospitals, or NHS campuses alongside other services. Across the UK nations, different legal frameworks govern the admission of people in long-stay hospitals and service provisions. However, statistics about people with learning disabilities and autistic people admitted and ‘getting stuck’ in long-stay hospitals are very similar across the UK.
An IMPACT Network on this topic took place from September 2023 to February 2024.
The aim was to explore the growing concern about the number of people with learning disabilities and autistic people in hospital for extended periods.
Discussion Materials
Before the first Network meeting, IMPACT carried out an evidence review and found:
- All 4 UK nations are characterised by alarmingly high levels of people with learning disabilities and autism admitted in long stay hospitals with an average stay of 3 years (and more).
- Discharge plans are often delayed because of inadequate community services.
- Surprisingly, there has been little research on why people with learning disabilities and autistic people spend so much time in these settings.
In particular, previous research often failed to speak directly to people with learning disabilities and autistic people, their families, or frontline staff about their experiences. As a result, key barriers and helpful solutions remain poorly understood.
This Network draws on insights from a guideline based on ‘10 top tips’ for helping people to leave hospital.
Networks are meeting across the UK, coordinated by:
In England:
Bild
St Andrews Healthcare (Northamptonshire)
In Northern Ireland:
Compass Advocacy Network (CAN)
In Scotland:
InControl Scotland
In Wales:
MacIntyre
At the first local Network meeting, members discussed the evidence review and their experiences of long-stay hospitals and delayed discharge for people with learning disabilities and autistic people. Networks identified several challenges delaying or preventing discharge:
🏠 Limited Housing Options
- There aren’t enough suitable homes for people with learning disabilities and autistic people when they leave hospital or care settings. This gap makes it harder for them to transition into the community.
📢 Poor Communication Between Services
- Professionals and organisations often fail to share information effectively. Consequently, the system feels fragmented and confusing for both the person and their family.
🤝 Lack of Accountability to the Person
- When accountability exists, it tends to focus on line management or systems rather than the individual. People with learning disabilities and autistic people, and their families, often feel excluded from decisions that directly affect their lives.
👤 Not Seeing the Person as an Individual
- Everyone’s needs are different, especially for people with learning disabilities and autistic people. However, these differences are often overlooked. Support plans must be truly personalised, not ‘one size fits all’.
💬 People and Families Need a Stronger Voice
- People should have real choices in their care and support, not feel as though decisions are made for them. One person with lived experience described feeling like “cattle” during the process of providers bidding to support them. Families should be included at every stage, not merely informed afterward.
📚 Lack of Information and Awareness
- Some people with learning disabilities and autistic people were shocked to learn about the reality of long-stay hospitals. One person asked, “Could this happen to me if I got sick?” Clearly, there is a need for better information about rights and hospital experiences.
💸 Funding Gaps
- Funding is a major barrier to providing high-quality, consistent support.
- Low pay makes it hard to attract and keep skilled, compassionate staff.
👥 Staffing Challenges
- Supporting people well requires staff who are both resilient and values-driven.
- Frequent staff changes can retraumatise people and lead to emotional issues, such as attachment difficulties.
🛑 Risk Aversion and Fear of Change
- Services often take a “you’ll never manage this” approach, putting up barriers to independence.
- Fear of things going wrong can stop meaningful change from happening.
🔁 Institutional Environments Can Make Things Worse
- Some hospital settings make behaviours worse rather than better.
- Systems that rely on behaviour-based rewards can lead people to lose the skills they need to live in the community.
⏳ Pressure to Act Quickly Can Backfire
- When decisions are rushed, the wrong provider, housing, or staff might be chosen. Removing community support too soon often leads to people returning to hospital. This reveals a lack of proper person-centred planning.
💔 Broken Trust
- Many people with learning disabilities and autistic people have been traumatised by their time in hospital. Building trust takes time. Although support can feel hard at the beginning, it is essential.
Following discussions on the key challenges and the ‘Top Ten Tips’, Networks identified several areas where they want to push for meaningful change:
🗣️ Language Matters
- People with lived experience felt the language in the ‘Top Ten Tips’ needed to be stronger and more emotional — to reflect the real harm caused when these tips aren’t followed.
- This is about human rights and inequality, and the language should make that clear.
- Members also highlighted how service language can shift blame — for example:
- “George declined to take part in activities” puts responsibility on the person.
- “None of the activities appealed to George” encourages a change in approach based on the person’s interests.
👶 Early Intervention and Prevention
- Feedback suggested the tips feel very adult-focused, and children are often left out of the conversation.
- There’s a need to consider early support in childhood to prevent crisis later on.
🧭 The Importance of Planning
- Planning for discharge should start from the moment of admission.
- Reducing restrictions before transition is key.
- People should understand and be part of their own plans — they shouldn’t be left in the dark.
📚 Sharing What Works
- Change is happening, but it’s often small-scale and exhausting.
- Lessons learned in one person’s case rarely carry over to others.
- Networks want to see examples of what’s working and more experimentation with new approaches.
🏷️ Challenging Labels and Reputations
- Labels can help create services, but they often become barriers.
- People are described in terms of how they behave or comply, rather than who they are or what they need.
- This leads to ‘hefty reputations’ that overshadow a person’s real identity and distress.
- The goal should be to understand why someone is struggling and support them in better ways.
🤝 Better Collaboration
- Professionals in hospital and in the community need to work more closely together.
- It’s also crucial to listen to the people who know the person best — whether that’s family or trusted supporters.
⚖️ Inequality and Humanity
- There’s a clear inequality in how people with learning disabilities and autistic people are treated — both in terms of admissions and lengths of stay.
- Basic needs are sometimes only met when people show “good behaviour,” which is unfair and dehumanising.
- The Top Ten Tips should name this inequality more clearly and advocate for dignity and fairness.
Between the second and the third meetings, networks discussed the existing review and started to identify the key areas where they wanted to see changes.
The local network meeting provided the time and the space to put different people together and discuss what areas could make the most impact. While planning the next actions, each network also started to make changes between meetings:
- Another organisation organised a demonstration and a conference at the Scottish parliament
- Building connections with other organisations
- Raising awareness and improving understanding about the problem on the national and local level
- Identifying good practices to prevent admission and facilitate discharge from long stay hospital
- One organisation reviewed and benchmarked their practices against the ‘10 top tips’ for helping people to leave hospital
Each network has organically chosen different areas of focus depending on their network membership. However, some key themes bringing all of the networks together came out:
Collective action around prevention of admission to long stay hospital
Throughout the IMPACT network meetings, it has become clear that the issues and challenges are collectively felt across the 4 nations, and a collaborative approach would be most effective to raise awareness and encourage local and national action.
Networks decided working together is the best way to raise awareness and encourage local and national action.
Equality and human rights
Another key theme that was shared across the networks is the importance of taking an equality and human rights approach. Changing practice is important but there is the need for a wider change in the approach and the language.
Networks would like to highlight all the negative consequences of the risk management culture in institutional settings, such as the missed opportunities, the human rights breaches and the unmet needs. In particular, it was highlighted:
Nobody is risk assessing the impact on people’s lives and their future lives by keeping the status quo, this is about shared positive risk taking.
“You’re not making these plans in order to put people at risk, the risk comes as part of a decision to try and have a good life, as it says, you know, it’s not just about having services”
Co-production
Networks also agreed on pursuing an overarching effort on how to make sure that in every activity carried out by the networks on the local and national level, we can ensure that the voice of people with lived experience is heard and included.
People using services are often not involved in their treatments, plans and in the creation of services.
Networks are looking for more creative ways to include the voices of people with lived experience, e.g. involving them in the development of Care Programme Approach (CPA) templates, invite closer people to talk of their story when they don’t feel comfortable to tell them directly, and make videos with the real stories of individuals.
“One thing we’re hoping is that from the perspective of capturing patient voice…feeding back on how that works for them and getting some really direct feedback in a way that will be meaningful to them because it has just been used as part of their care planning.
I’m really hopeful for when we run the pilot of our new approach for our Care Programme Approach template”
Theory of Change
‘Collective Action’ and Outputs
Network members agreed that this specific topic required a joint action plan. Therefore, the networks launched an awareness-raising campaign across all four UK nations, based on four key messages identified during the network meetings:
- Human rights violations have, and continue to occur in long stay hospital settings
- The human impact on people’s lives and their families
- The importance of language when talking about patients in hospital
- Sharing examples of good practice alternatives to ineffective ways of working
On the basis of these key messages the networks have co-produced a film, titled ‘Homes not Hospitals’.
The film is led by people with lived experience of long-stay hospitals, either through their own admission or the admission of someone they care for. It shares their powerful stories.
The film launched during a webinar attended by 450 people and has since been shown at live events, followed by panel discussions. The images below are from an in-person event held in Sheffield for the Festival of Social Sciences.
‘The film was very impactful. A sincere thanks to all that were willing to speak up on camera. Many years ago, I was a mental health act officer with a LD ward on my caseload. I watched the film nodding and felt despair that nothing seems to have changed even with all the talk back then of moving to a care in the community model.’
Local plans: changing practices
Each network also developed a local action plan to create change. In particular, InControl Scotland and St Andrews chose to focus on changing practices to improve discharge planning for people with learning disabilities and autistic people in long-stay hospitals, or to avoid hospitalisation altogether.
The network from InControl Scotland is still regularly meeting with the participants of the network. They have established a community of practices named ‘New Routes Home’, which provides a peer support network for people with lived experience and families, and practice exchange for professionals. During the network, they created a document ‘Are we heading in the right direction?’, which shows how professionals’ choices can lead to two very different scenarios for an autistic person during a phase of distress.
As part of the network process, St Andrews focused on their organisational practices. Their action plan was based on two main work streams:
- Project 1: Self-evaluation against the ‘Top Ten Tips’ – these were one piece of evidence included in the first discussion material
- Project 2: From admission to discharge – mapping the process
Here is a document produced by St Andrew’s where they share their experience of involving people with learning disabilities and autistic people to improve hospital discharge planning from long-stay hospitals.