Having an IMPACT on Improving Adult Care, Together
In 2023 MacIntyre successfully applied to the University of Sheffield to host a series of local Network meetings in Wrexham and in Greater Manchester with a focus on “Hospitals to ordinary lives”. The purpose of the project was to establish Local Networks and to create an action plan for practical change.
In this short blog we hear from MacIntyre’s Adult Services North Director, Laura Selby, who describes what happened…
For context, there are 149 people currently in ATUs/Inpatient mental health settings across Wales, with an average stay of around 9 years. This is worse, as a percentage of the population and length of stay than in England.
MacIntyre have been facilitating an IMPACT (Improving Adult Care Together) network in Wrexham, Wales. We connected to a 4 nation’s network and between us we discussed the topic of people with learning disabilities / autistic people leaving long-stay hospitals. The idea of the network was to bring people together to learn and support each other and, ultimately, identify ways to create positive change locally and across the UK. The first network started by looking at an evidence review provided by IMPACT. Some of the main points were:
● All 4 UK nations have alarmingly high levels of people with learning disabilities and autism admitted in long stay hospitals with an average stay of 3 years (and more).
● Data shows that often discharge plans are delayed due to lack of adequate community support.
● 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 and what they see as the main barriers and what would help more people to leave hospital.
The common themes which were raised throughout the IMPACT network meetings were (you can read more about here):
1. Collective action around prevention of admission to long stay hospital
- Issues and challenges are collectively felt across the 4 nations
2. Equality and human rights
- A wider change in the approach and the language used is needed.
- Highlight the negative consequences of the risk management culture in institutional settings
3. Co-production
- Ensure that the voice of people with lived experience is heard and included.
Our Involvement
People who draw on MacIntyre’s support in Wales contributed to the Wrexham network via people who know them well as everyone had said they were far too busy living their lives to attend the meetings! One person, who has previously experienced a very long stay in a highly restrictive setting, was at the zoo for the first meeting date and a job interview the next. We were joined by people from Wrexham Council, the North Wales Together Partnership, Improvement Cymru and Redstone PBS. There were a lot of challenges identified locally and across the UK. The biggest challenges identified for Wales were:
• Skilled staff – particularly staff skilled in Positive Behaviour Support (PBS)
• Securing suitable homes in the community
• Commissioning barriers e.g. the need to re-tender regularly
• Access to the right emergency support to prevent admission
The stories from Wrexham however gave us so many ‘glimpses of the future’ and really showed how a proactive commissioner, working in partnership with support providers, can overcome many of these challenges and make a real difference to people’s lives. Heather Henry, Project Team Manager, has worked closely with MacIntyre for more than ten years and between her and our Wrexham Area Manager there were so many inspiring stories shared.
So what is it that’s working so well in Wrexham? Some of the main things I took away from our conversations included:
• The social work and projects teams really know people well and share good quality pen pictures during tenders.
• They act fast and have a ‘plan B’ if there might be a problem with support for a person or a risk of breakdown in support. We talked about two people who draw on MacIntyre’s support in Wrexham who had struggled to live good lives together so MacIntyre and Wrexham Council had jointly come up with an alternative option that has led to many great outcomes for them both - Toni’s story as an example. Our Wrexham Area Manager reflected that without this change, support could have become very hard to continue due to staff burnout.
• They have a long term focus and plan ahead so are able to see creative solution projects through from start to finish. This includes a group of specifically designed apartments where MacIntyre has supported people for over 10 years. We know it takes considerable time to secure the right home for a person and so the team in Wrexham know they need to be predicting needs at least 2 years in advance.
• They are creative – Asking what would it take? How can we overcome this?
• They fully embrace the role of people and their advocates in making important decisions. This includes supporting people and their families to make the final decision on which support provider should provide their support.
• They focus on ‘commissioning for a good life’ and commissioning quality support. We talked about Marc who previously lived out of county for a long time in what felt like a ‘holding cell’ and who now lives in his own flat with support to lead a very busy and fulfilling life. Being able to work together, share risks and find solutions has been critical to enabling this change. As has coaching and training from MacIntyre’s compassion-first Positive Behaviour Support team and recognition by Wrexham of the value this brings.
• A 16+ supported living model which has really reduced the cliff edge at age 18/19.
• Not taking no for an answer! In one example the Wrexham team had convinced the Welsh government to agree to setup a children’s home for two young people with plans in place to re-register as adult Supported Living when needed. They are a few years apart in age and the barrier of a child living with an adult when the older turns 18 has been overcome for this pair.
• Wrexham are exploring setting up a specific team for adults with multiple diagnoses who could currently sit in multiple teams, or slip between the gaps. This is particularly pertinent to autistic people in a mental health hospital who may have gained lots of mental health labels that may in fact be due to the trauma of being autistic in an extremely challenging sensory environment.
