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 from the 1960s onwards, there has been a growth in people admitted to ‘assessment and treatment units’, with widespread recognition that some people stay here for far too long, sometimes with little ‘assessment’ or ‘treatment’ that could not be provided elsewhere. Other people live in secure units, mental health hospitals or in an NHS campus alongside other services.

Across the UK nations, there are different legal frameworks concerning the admission of people in long-stay hospitals and services provisions, statistics about people with learning disabilities and autism admitted and ‘get stuck’ in long stay hospitals are very similar across the UK.

This is a real problem for at least four main reasons:

  • Hospitals, although potentially needed by some people for specific periods of time, are not designed to support people to lead an ordinary life. Few people (if anyone) would want to live in a hospital if they could genuinely choose.
  • People are often ‘out of the area’ – a long way away from their family, friends and local communities.
  • There have been a series of horrific care scandals in some such settings, with harrowing accounts of abuse, neglect, deaths and widespread deprivation of human rights.
  • Hospital services can be very expensive. This can create a ‘vicious cycle’ where funding is sucked into institutional forms of care, leaving less money for community services and leading to even more people being admitted.

An IMPACT Network on this topic took place from September 2023 to February 2024 with the aim of exploring the growing concern about the number of people with learning disabilities and/or 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).
  • Often discharge plans are delayed due to lack of adequate community services.
  • That there has been surprisingly little research on why people with learning disabilities and/or autistic people spend so much time in these settings. In particular, previous research has often failed to talk directly to people with learning disabilities/autistic people, their families and front-line staff about their experiences of living or working in such settings, what they see as the main barriers and what would help more people to leave hospital.

This Network draws on insights from a guideline based on ‘10 top tips’ for helping people to leave hospital.

Network Coordinators

There were five local networks:

First Network Meeting Discussions

At the first Local Network meeting, Local Network Members discussed the evidence review and their experiences of long-stay hospitals and late discharge for people with learning disabilities/ autistic people.

  • Lack of alternative accommodation readily available for people to move into.
  • Lack of communication between professionals / organisations in a system that is disjointed and fragmented.
  • Lack of accountability, and where there is accountability, it is still focused on corporate and line management, rather than responsibility to the person and their family.
  • Lack of understanding of the individual needs of each person. Each person’s autism, for example, is different.
  • The person needs to be much more involved in the choices about what happens to them. One Network includes a person with experience of long-stay hospital who found the process of providers coming in and ‘bidding’ for him made him feel ‘like he was cattle’. Families too should be involved in the whole process and at every stage, not informed of decisions after they have been made.
  • Lack of information: in one network in particular, which was attended by people with learning disabilities who never experienced hospitalisation, participants were ‘shocked’ about the statistics on long-stay hospitals. One of the participants said, “Oh my God, could this happen to me if I was to be sick?”. Therefore, there is the need to inform people about their rights and what can happen to them if admitted to hospitals.
  • Lack of funding.
  • Needing resilient staff with correct skills-set (again lack of funding means salaries that don’t bring in the high calibre of staff needed). Recruiting and retaining staff who are there for the right reasons, have the right balance of resilience and values/compassion and the ability to understand and follow often very complex support plans is a real challenge. A lack of consistent staff in hospital has often created repeated trauma which then results in a label of ‘attachment issues’.
  • Risk aversion: Hearing things like ‘you’ll never be able to make this work’ / ‘you’ll never be able to remove X restriction’ or live in the community, with various “hoops people need to jump through and moving goalposts” to navigate. In institutional settings, a fear of things going wrong means even when people try to change things, they are often unable to make a significant change outside of the quality of their own interactions.
  • Vicious cycles: Some hospital environments: Behaviour happens in the context of the environment and hospitals therefore often escalate rather than reduce ‘behaviours’. This can lead to the real person getting lost / forgotten and makes it extremely difficult to risk assess for a community environment. Also, in some settings, rewards based on behaviour creates a vicious cycle – this institutionalises people and leads to them losing the skills they do have to exist in the community.
  • Pressures to move quickly can mean that commissioners move forward with the wrong provider / housing / staff team or removing community support too soon can then lead to re-admission. This also shows a lack of true person-centred planning.
  • Trust: Many people who have been through the traumatic experience of living in a hospital setting have experienced significant trauma and so building trust takes a long time. This can make supporting them really hard at first.

Based on the discussions around the key challenges and the ‘Top Ten Tips’, Networks started to think about where they might want to focus their activities to make a positive change:

  • Language: Many network members with lived experience of hospital inpatient settings felt the language in the Top Ten Tips needed to be stronger to acknowledge the severity of the harm caused if the tips are not followed. There needs to be more emotive language to acknowledge the fact that this is a human rights and an inequality issue. This then sparked a discussion about language used in services and long-stay hospital: for example “‘George’ declined to take part in the activities on offer” makes ‘George’ the problem, rather than “None on the activities on offer appealed to ‘George’” suggests a different course of action- changing the activities to align with ‘George’s’ interests.
  • Early intervention, including childhood and prevention: we received the feedback that “‘the ‘top ten tips’ seemed to be adult-oriented and more widely children are marginalised in these discussions”.
  • The importance of planning: Planning for discharge at the point of admission, including the importance of restriction reduction before the person transitions or of creating ‘halfway’ opportunities. It’s also important to make sure the person being cared for understands the plan.
  • Evidence sharing and examples of what works well: Change continues to be small scale and exhausting. Lessons learned from one person’s situation are not often carried over to other situations, the only way to make real change is to try different approaches.
  • Labels and ‘hefty reputations’: Labels might be helpful from a hospital perspective- they ultimately create services for specific conditions- but as a result, the way people were written about often described them from an institutional point of view and whether they comply with rules rather than about their personality, wants and needs. This forms unhelpful labels and ‘hefty reputations’ rather than seeing them as a person and understanding why they are distressed and acting a particular way (and then working to help them to not become distressed).
  • Collaborative working: Between professionals involved in a person’s care in the hospital and the community, and the importance of talking to people who know the supported individual best.
  • Inequality and humanity: There is clear inequality for people with learning disabilities and autistic people in rates of admission and length of stay. The top 10 tips don’t acknowledge this, or that sometimes their basic needs weren’t being met, and the only time they were met is if they had “good behaviour”.

Second and Third Meetings

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:

  • 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
  • Another organisation organised a demonstration and a conference at the Scottish parliament

Fourth Meeting: ‘Call for Collective Action’

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.

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.

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”

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”

Shared Activity and Outputs

Based on the themes highlighted from the fourth meeting, the networks decided to launch an awareness raising campaign across the all 4 nations networks.

Suggested key messages from networks so far include:

  • 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 practise alternatives to ineffective ways of working

The networks are planning to create:

  • Videos
  • Case studies – preventative and effective examples
  • A community of practice