This case study forms part of the What Good Looks Like report on people with a learning disability and autistic people. This co-produced report was commissioned from the Building the Right Support (BTRS) Advisory Group, as part of the wider action plan developed by the Building the Right Support Delivery Board. It has been supported by Partners in Care and Health.
Introduction
This bespoke, family-run provision operates in Oxfordshire to support the young man, Michael, with his very complex needs, both in terms of his learning difficulty and with regards to his mental/emotional health and wellbeing.
The challenge
The horrific experiences that Michael endured whilst, inappropriately, spending time in various assessment and treatment units around the country, and his family’s constant fight to get the right care for him, ultimately served as the motivation to set up a completely bespoke provision, built around him and based on the building blocks of his home, family, and familiarity with his local community.
Michael’s experiences of clinical institutions are very much still felt today. There was a complete lack of clinical or therapeutic attention anywhere he stayed, and worse still he endured ridicule, neglect, trauma, and physical injuries incurred from hair-trigger restraint practices and varying courses of medications which appeared to bring more negative side-effects than positive. He was physically and mentally ravaged during his time in these institutions and he came out a very different young man.
The solution
The care now in place was established to empower him to make choices about his home and life. He attends as many of his chosen activities as he safely can, and his staff manage to strike a conscientious and considered balance between keeping him and themselves safe, whilst not becoming completely risk averse. His home and life are run and directed by him, where that is achievable. It is a home first and foremost, not a “service.” The support provided is genuinely person centred.
The impact
Compassion and respect
Time is devoted to just being with Michael and chatting with him in a low-demand manner. This is an affirming and normal experience for all of us, and evident here. Michael is listened to with respect and compassion.
On days where he is struggling and trips to busy environments are likely to be too overwhelming for him, staff don’t just check in for observations, they sit with him, eat with him, play games and dance with him. They talk with him about how he’s feeling, not because they have a clipboard and pen and need data to complete a report, but because he’s upset and they want to be there for him.
When he returned home from his last acute treatment unit admission his care plan was ‘bare’ with nothing meaningful in it and there was no clinical assessment, insight, or any therapeutic recommendations. The family had to take it upon themselves to enlist a training provider who had worked with Michael in the past to develop a bespoke training package that aimed to give the best possible insight into who Michael was as a person; his likes, dislikes, communication style, sense of humour, and relationships were all explored using videos, photos, stories from people that know him. Underpinned with theoretical data, the training enabled his staff to recognise him almost as if they already knew him, not as a client whose triggers they had to be aware of, but as a person whose struggles they felt for.
His staff team started working with him without knowing exactly how things would be when he was discharged and anticipating that it could be a difficult transition for him, due to the severity of the experience. But it almost did not matter that they had very little specialist input to work from, because he was now surrounded by people that really liked him and a family that loved him. No matter how difficult some days or events were, his team approached the challenges with compassion. Rather than focusing on ‘challenging behaviours or behaviours of concern,’ their concern was always how can we help him get through this, or how can I adapt to what he needs from me?
The wider systems across education, health and social care still struggle to adjust to the needs of an individual. Whilst it is true that Michael has very complex needs, both in terms of his learning difficulty and with regards to his mental/emotional health and wellbeing, this complexity just necessitates a model of support that is not just bespoke, but that is innovative, adaptable, and truly person centred. Michael’s support team is painting a clear picture of what good can look like for Michael and we must hope that, eventually, all those external systems can catch up to him.
Values
The staff team’s values are in line with the highest aspirations many provider organisations have, but in practice often fail to meet.
Safe and knowledgeable staff team
There has been a notable lack of staff turnover. Staff love working here and genuinely like and admire Michael. They know him extremely well: his likes and dislikes, his necessary routines, his history and diagnosis, his sensory needs. They have developed the ability to “tune in” and read his subtle cues so that they are able to adjust any given situation to manage his anxiety.
The team demonstrates very high levels of openness, honesty, insight and is open to reflecting on what does or does not work. The way the team works is a consequence of recruiting individuals with the right values and the ongoing work to support staff learning and development. This includes encouraging reflective practice and creative thinking. This reflective practice has been supported greatly using videos so the team can look back at their interactions with Michael and learn from them. Ongoing training and expertise.
The team are kept up to date with national guidance and best practice. They have studied, researched, and been supported to learn about trauma informed care, autism, active support, intensive interaction, and mindfulness. Fundamentally, they are willing and open to learning and development and put it into practice.
How is the new approach being sustained?
Michael’s family and staff have shown incredible dedication and resilience in their fight to get the right support for him, throughout, and despite, a prolonged period of great uncertainty. Michael was discharged from the last ATU placement because it was clear that more harm than good was being done to him, and under the agreement that a new, bespoke property would be prepared for him in 3-6 months, he moved back into his family home (which had undergone significant adaptation so as to create a safe and secure environment for him to live in temporarily).
Due to repeated commissioning failings, misinformation, and a total lack of any real co-production, nearly three years later Michael still has no home of his own. This causes plenty of stress and strain, but mostly it causes anxiety because until he has a home of his own, properly prepared and adapted to be fit for purpose, Michael’s future remains uncertain, as currently it is only the hard work, dedication, compassion, attentiveness and incredible skill of his family and staff that keep Michael from being taken into hospital again.