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A Patient Leader at NHS Nottingham City CCG talks about the important contribution that people with lived experience can make in helping to co-produce NHS services:
Our son Avy is 8 years old. He is a lovely boy with an infectious smile.
Avy also has complex needs and he requires a lot of additional support on a daily basis. I am his primary carer.
Avy has a Personal Budget from Nottingham City Council. It offers more choice of services and providers than we were previously used to, and flexibility on how to use the support to meet his needs. In short, it offers control over his care and support services.
My son is getting good quality support because of his Personal Budget which allows him to enjoy himself whilst getting the best possible care and support that he needs. As a result his confidence has also blossomed. The budget has particularly helped Avy to access many activities in the community including weekly swimming lessons, after-school club and various activities and events during the school holidays.
It also means that whilst Avy is having lots of fun, I have the opportunity to have a bit of a life myself. I recently completed my PhD, I volunteer at various organisations and I have enrolled for my driving lessons. But one of the biggest things I’ve been able to become involved in is co-production as Peer Leader or Patient Leader.
Through the NHS Nottingham City CCG, where I volunteer as a Patient Leader, I became associated with the Nottinghamshire Personalised Care Co-production group. Professionals and people with lived experience of being disabled and/or are managing long term health conditions, meet once a month to find shared solutions to the challenges we’re all trying to overcome.
Being able to use my own lived experience as a carer to explain the difference that Personalised Care can make is so important, and myself and other Patient Leaders are now the go-to group for any work involved that needs the perspective of people who use health and social care services.
In addition, I’ve been involved in co-designing a care and support plan and other supporting material which is now starting to be used across Nottinghamshire. I am also taking part in many steering groups and we are now planning to ‘spread the word’ to other colleagues who work for providers and VCSE organisations about the benefits of personalised care and the co-production of their services.
Being involved in genuine co-production, both within Nottinghamshire and on a national level has been a real eye opener to me and I now understand more about the challenges people face within the system. But it has also given me the chance to make sure that other people get the same choice and control that Avy has. Our personal budget has transformed our lives, and now being involved in co-production is a chance to do the same for others.
This week, I’ve also completed the Peer Leadership Academy, which is run jointly by NHS England and People Hub. We were required to participate for six days over three months, which was a big commitment for me. However, this was not just another training programme; it is a personal development programme.
It is about developing close relationships between Peer Leaders and NHS England and a chance to learn more about the Personalised Care programme.
Listening to other people’s personal stories (#myPHBstory) changed my perspective on my life. I also received constructive feedback about my personal story, which really helped me when I communicate this to others.
I encourage anyone with lived experience and a passion to make a difference to apply. You won’t regret it.
- The Peer Leadership Academy is a personal development programme that aims to build people’s knowledge, skills and confidence so they can play an active role in the personalised care programmes and co-production on a national and regional level. Applications for the next Peer Leadership in Autumn are now open. For more information please visit the Peoplehub website.