When I found out my project ‘Carnival’ had been awarded the Boundless Accelerator Award, I was over the moon. I was so excited to get going, because I knew there would be a lot of research ahead of me. I had an idea, but little did I know that the area of mental health and wellbeing for young people with complex needs was so ludicrously under researched and barely talked about.
I would like to highlight that there are some wonderful people who do brilliant work in this field, including Joanna Grace who runs days on Sensory Engagement for Mental Being, specific medical professionals, dedicated artists and teachers, and voluntary groups such as PMLD link; but other than this handful of passionate people and a few outdated reports online, there was and is nothing.
I thought to myself, if I find this incredibly frustrating, how must young people with complex needs be feeling? And how must the people who care for them be feeling? We have to do better.
After what felt like months of feeling like I was getting nowhere with research and connecting with people, I came across “The Wellbeing Project” which took place in 2005. The project was carried out by The White Top Research Unit, University of Dundee, to investigate how family carers and care staff identify and respond to changes in the mental and emotional well-being of these young people, using diagnostic instruments to identify psychiatric indicators, together with carer interviews. The project also explored what service support was sought by and available to family carers and care staff.
The study reiterated something I already knew to be true, “The studies on mental health and wellbeing of those with complex needs tend to focus on professional diagnosis of the psychiatric conditions under review. However, it is frontline staff and family caregivers who will be most sensitive to changes that may indicate an alteration in emotional and mental well-being, or mental health problems.” (The Wellbeing Project)
This project reaffirmed that one of the ways to understand the mental health and wellbeing of young people with complex needs – who may have barriers when it comes to communication – was through connecting with the people who spend the most time with them. I knew I had to do just that!
I created an online form to share around the internet for people such as parents, carers, siblings, family members, teachers etc. to fill out, to hopefully get some insight and understanding into their own experiences of mental health and wellbeing of people with complex needs. The form is still collecting information and will be until the end of November. I hope by then, I will have gathered some really helpful and insightful thoughts and experiences to reflect on for this project.
A massive thank you to Boundless Theatre for making this research possible with the support of their Accelerator Bursary. The journey of ‘Carnival’ has only just begun but I’m very excited to see where it leads. I hope that this project can begin as a wake-up call for everyone, everywhere – to start a conversation, to ask a question, to understand that we all have mental health – and we all deserve for it to be looked after as best as possible.
The Wellbeing Project (pg 111): https://www.bristol.ac.uk/media-library/sites/sps/migrated/documents/makinguscount.pdf