On the 21 April, Dom Sharpe, who is an Expert by Experience supporting our Positive Behaviour Support team, will step out onto a stage in Manchester to deliver his inaugural conference presentation.
Supported by Sarah Kilby, MacIntyre’s PBS and Complex Support Manager, Dom focuses his case study on lived experience as an Autistic young man with a learning disability, who through lack of correct early diagnosis in childhood, found himself within the acute mental health system,
In his presentation, Dom is open and honest, and in his own words describes his experience as scary. That, although he “learnt to behave” (Dom’s words) in the hospital, as soon as he returned to everyday life, he had no new ways of coping with all the things he found difficult. All he had was just a new diagnosis of Emotionally Unstable Personality Disorder, stronger medication and bad memories.
Finally after being recognised as Autistic and having a learning disability, Dom’s life began to take a different path. MacIntyre‘s team in Wigan met Dom two years ago at the start of the pandemic, when Dom and his Dad, David were really having a hard time coping with the changes.
Over the last two years, Dom has gradually been working towards living in his own home. Because time away from his Dad is difficult for Dom, getting used to the change will take time but now Dom has several sleepovers and full days of support in his bungalow.
Central to Dom‘s journey is his framework of individualised Positive Behaviour Support (PBS).
PBS is a framework defined by its commitment to understanding why a person behaves in a way they do, and by doing so using contextual behavioural theory. PBS is about learning how a behaviour is shaped throughout the person’s life and why it is present in the ‘here and now’, and what value and use it has for a person. All this, with choices about approach filtered through and agreed on by adhering to a total commitment to the person’s human rights.
It is widely recognised that behaviour is shaped through the external environment but evidence in the field of contextual behaviour theory shows that our thoughts are shaped in just the same way. Unhelpful or negative thoughts lead to unhelpful or often harmful behaviour.
In his presentation Dom says, that as an Autistic person with a learning disability he needs help to learn skills that allow him to cope and understand the world around him and the thoughts that impacted on him because of his past, which then led to his mental health difficulties and him ultimately using self-injurious behaviours to seek out medical or police intervention to soothe and make him fell safe and cared for, at times when that’s not what he felt.
In the recently published “PBS in the UK: State of the Nation”; (Gore et al 2022), the refreshed definition of PBS states:
“PBS is a multi-collaborator approach, PBS values the expertise of people from a variety of professional backgrounds, and those with lived experience, and embrace evidence-based approaches from several disciplines”
Reflective of this over the last two years alongside Dom, as an active participant in his PBS approach, , we have worked collaboratively under the banner and scope of PBS with both health and psychology.
The path to being able to reduce behaviours that cause concern, including thoughts, is not to eliminate them but to replace them with behaviours and thoughts that are more pro-social but equal in value, until they become habits that stay with a person for a lifetime. These habits are then resilient to changes in environment, meaning people can more actively self- determine their own lives.
For Dom, this means:
- working alongside his MacIntyre team to proactively practice skills taught as part of DBT, a form of behavioural therapy, working in tandem with Greater Manchester Mental Health Team
- practicing acceptance to manage change and disappointment when things don’t work out how he wants in terms of life’s everyday annoyances, especially the little things such as a poor zoom connection!
- practicing mindfulness to distract those unhelpful thoughts and make better choices when calmer about how to respond in situations or being able to ask for help
This is all part of Dom’s PBS approach.
Honest as ever, Dom reflects in his presentation that some days are tough. The evidence is that Dom is less and less hurting himself. He now feels confident to hold down two work roles, one with us in MacIntyre and one in his local community, and he has been developing a new sense of self, separate from the one that he had before that was linked to the frequency of A&E visits.
When asked about his debut outing next week he said:
“I am nervous but excited too. I cannot wait to do a mindfulness session with the whole of the conference at the end... I want to share my story so no-one else has to go through what I did”
Good luck, Dom! We at MacIntyre are really proud of what you have achieved.
Inspired by Dom's story?
We are currently recruiting for a role of Mental Health and Forensic PBS Lead - deadline for applications is 27 April. You can also explore more about MacIntyre's PBS and Transforming Care work by reading more stories below.