Your wellbeing in mind & Norfolk and Suffolk NHS

The stories of service users must be at the heart of social care decision-making

Shared by the Guardian

It’s been a year since I put pen to paper for these pages. Last time I wrote about negative labels, stereotypes, stigma and how I was sharing my story to help others tell theirs and break down some of the barriers we face in today’s society.

I wanted to share an update of how my work has developed and the changes that have happened in my life.

The first opportunity I had to share my story to a bigger audience came as a result of my blog on the Guardian. A journalist from BBC Radio 4’s In Touch programme read the article and wanted to find out more. He came to spend the day with me, when we talked about the work I was doing. I was really honest about my life, and am proud of the final piece.

A few weeks later I found myself standing in a parliamentary committee presenting evidence with the charity Lankelly Chase to support the Hard Edges report, which showed multiple disadvantages faced by vulnerable people have their root causes in childhood trauma, disrupted education and economic inequality. Findings from this report were then mentioned in the new budget.

I had never seen myself as someone who could influence government policy. But walking through the doors of parliament and being listened to by politicians made me realise this was something I could do. And after this, I was asked if I would be interested in becoming a trustee and board member for Lankelly Chase.

I’ve run workshops up and down the country on storytelling and using social media to raise awareness and challenge prejudice. And I see real change where I live, in Stoke-on-Trent. At the end of last year, 200 professionals gathered at the Expert Citizens’ first insight conference and awards to discuss services for people with multiple and complex needs. It was the first conference of its type in the country, and we saw people with first-hand experience recognising the achievements of professionals.

I’ve found myself in many interesting situations that only a few years ago I would never have dreamt of.

Policymakers and practitioners are increasingly paying attention to people with lived experience. We have spoken with policymakers at a local and national level. There is a lot of interest in our work and we have sat down with leaders from the NHS, local authorities, police and probation services. I feel that there is a lot of goodwill and that service users are being listened to. People in power are beginning to recognise we can help to produce better policies, and contribute to the services’ design, delivery and evaluation. Working in this way needs a strong commitment to developing a community of people with lived experience who have the confidence and assets needed.

User involvement in care inspections is jeopardised by CQC’s short-sighted thinking
Peter Beresford
Read more
Our personal stories can help identify where systems are working well and where there is room for improvement. But if this interest in personal accounts is to become a sustainable method, rather than a passing fad, then organisations need to recruit people with lived experience to their leadership.

Commissioners and policymakers need to be given the time and skills to not just involve or consult, but to employ people with lived experience as peers, working together from the first spark of an idea to its implementation and delivery. If people with lived experience are only involved in policymaking once key decisions have been made, then engagement has failed.

My experience is that decision-makers are increasingly taking steps to involve people with lived experience. I believe this is not merely a token gesture, but it will take time to embed in the system. This is why I love what I do and am committed to helping others whose stories go unheard.

I will be attending the Social Media Exchange event on 8 February, delivering workshops on storytelling and hopefully empowering others to share their experiences.

The power of storytelling is truly amazing. It can bring so many rewards, and I look forward to encouraging others to carry on sharing their stories over the next year.

I look forward to hearing yours.

@darrenmurinas @expertcitizens