My family moved to the UK in the early 1990’s. Soon after my birth here I was diagnosed with Osteogenesis Imperfecta or brittle bones disease. This means my bones are fragile, prone to breaking easily. As an adult, I still need to be careful about this every day.
I’ve seen a lot of specialists about my condition over the years. Overall the support has been great, but the transition from children to adult services proved difficult to me because I was from a BAME (black, Asian and other minority ethnic groups) background. A lot of promises were made, but in the end, I felt lost and unsupported.
When I heard NICE were looking for people to develop their ‘transition from children’s to adults’ services’ guideline, I thought it would be a great opportunity to share my experiences – the good and the bad – to help shape national policy.
There was a good mix of people on the committee. They came from all walks of life and different levels of experience. The chair made all of the lay members feel valued and equal alongside the professionals. The NICE project team also ensured I had the support I needed to manage my condition.
As someone from a BAME background, I was able to use my perspective and knowledge to influence the recommendations being made. My unique experience was valued by the committee. And it was great to know my input would ensure the guideline would help people like me.
Committees like the one NICE relied upon to develop this guideline needed to reflect the diverse populations the NHS serves. I think ensuring BAME groups are well represented in any committee is very important since it could only mean more inclusive guidelines will be developed and put into practice.
Working with NICE has taught me a lot. My confidence has improved and it’s great to know I have made a difference. I whole-heartedly recommend joining a NICE committee if there is a topic you feel strongly about. It could be a life-changing experience for you as it was for me.
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