Over the next five years, The IMPACT Centre for Improving Adult Care will bring researchers, social care professionals and people who draw on services together to run projects implementing positive change to adult social care. Casting an expert eye over these projects will be the co-production group: ten individuals using their lived experience of social care to inform and improve the outcomes.
What is co-production?
If co-production is done right, people who receive and use services—like adult social care—work equitably with providers, sharing influence, skills, and experience to design, deliver and review services and projects. When IMPACT was set up last year, it was clear that co-production should be at the heart of its governance.
IMPACT’s Director, Professor Jon Glasby, knows that learning from peoples’ real lives is essential to creating meaningful change. He trained as a social worker before moving into academia, and seeking the opinions of those who draw on social care has long been a cornerstone of his research. Yet when he asks people what they think about their care, he often hears the same thing: “Nobody has ever asked me about that before.” One of IMPACT’s biggest achievements in its first year has been the assembly of a diverse co-production group. They have intricate knowledge of adult social care systems in the UK, and it’s their job to tell IMPACT exactly what they think.
Caroline Kelly’s son David was born with Prader-Willi Syndrome. For forty-five years, she has managed his care, whether that meant providing it herself or eventually drawing on care services so he could gain much-needed independence. “I joined this group to make sure that we are monitoring the projects,” she says. As a parent carer and a lawyer, Caroline is determined that IMPACT must have a positive influence on the problems evident in adult social care systems. “Families are experts; this is about being an active part of the solution. This is about resources, about how money is spent.”
Care services are an essential part of Ceri Davies BEM's everyday life. For her, it’s imperative that IMPACT’s projects are shaped to influence policy. “I hope this leads to equality, to more representation for disabled people," she says. "I want the government to realise what it’s like for us.” Ceri is the proud recipient of a British Empire Medal for her disability rights campaign work—one of the UK’s highest honours.
As a young man, I was told there was no hope for me…but we all need hope.
Mental health advocate and service user Terry Davies
Terry Davies has received mental health services since adolescence. He was told that his marriage wouldn’t last and that it would be better if he didn’t have children; a doctor advised that he take disability benefits and not worry about working again. Yet he went to university, achieved Batchelor and Master’s degrees, and after working as a university tutor, is now studying for a PhD. Happily married for thirty years, he and his wife Miriam have raised three sons who are now embarking on their own degrees and careers.
Through his experiences in using services and working in mental health advocacy, Terry knows that current systems and services must change to help others. “We can do so much better. We need to take back control…but power is not easily surrendered.”
Co-production may seem an obvious avenue for social care improvement, but in practice, people who draw on care still struggle to be heard. “There’s so much misunderstanding in the wider community in Wales about what co-production is about,” says Terry, “particularly from statutory services.” Like many members of the group, Terry already has experience of co-production. After positions with the NHS, the Bipolar Organisation and The Mental Health Foundation, he works for West Wales Action Mental Health, a charity who offer development advice to mental health service providers.
For Luke Nash, a service user and campaigner, it’s important to hold local authorities to account so that all service users get the care they need and deserve. “My journey in the care industry hasn’t been easy,” he admits. “We’ve struggled to get funding. My local council were only funding if families were in crisis. We ended up self-funding for the first couple of years.” Support seemed to drain away when Luke transitioned into adulthood. “We got very little guidance from my school, who were surprised that I didn’t get any help from the local authority.”
Luke wants policymakers to know that the needs of young people do not change just because they transition into adult services. “More needs to be done to integrate services for smooth transitions,” he points out.
Parent carers have a huge stake in co-production
“I’m able to attend this meeting because it’s online,” explains Jo Phillips, a leader at co-production charity Swansea Parent Carer Forum . “My son is always at home and I can’t leave him. But I don’t want other families to go through what we’ve gone through.” Jo’s 19-year-old son can’t access many of the services he needs, including education and mental health care. He has never met his social worker. As a single mum, Jo has been left to compensate for these consecutive failures and is adamant that her experience should not go to waste. “The greatest impact on decision making should come from hearing real stories from real people. Co-production can work; I’ve seen it happen.”
Orla Fitzsimons is a parent carer for her 16-year-old son with disabilities, a mental health service user, and a survivor of domestic abuse. She is also a Community Children's Nurse with 25 years of experience working with children and young people with disabilities/palliative care needs, their parent carers and families in Northern Ireland’s communities, homes and schools. She discovered co-production and its benefits when she (and other parent carers) formed Parent Action CIC, a social enterprise for community development.
“When we listened to other parent carers, we realised all our experiences were unique, yet similar, when trying to access public services for our children: we felt we had no voice.” Orla and her colleagues found that despite their expertise, they were regularly ignored—and sometimes deliberately silenced—by local authorities and policymakers. “I wanted to join the co-production group to highlight the devastating impact fighting battles with all these different public services, over years and decades, has on parent carers mental and physical health. It causes social isolation, and affects our relationships, finances, careers, our children's mental health (including siblings), and our children's futures and lives.”
IMPACT believes that care is about having a good life
Single mum Jacqui Darlington BEM was awarded a British Empire Medal for services to her community. She is carer to 30-year-old son Josh, whom she credits with giving her purpose. “He is my reason to fight," she says. "My lifeline.” As Josh became an adult, Jacqui was unsettled to learn that services previously open to him were now closed. “I set up the Out of Hours Club Rutland because when adults with additional needs get to 25, there’s nothing. And I want them to have a life. I want my son to have a life.” The Out of Hours Club Rutland provides activities and outings, offering adults like Josh opportunities to get out of the house, make friends, and create memories. Without the club, many would find themselves isolated and at risk.
“My daughter is a bright, sociable teenager,” says carer Ann Marie Penman, who joined the group to fight for better opportunities and hold service providers to account. “She has a right to a good life, but that has not been our experience when trying to get the support she needs. We are often not listened to or simply ignored. There has to be a better way.”
What are the next steps for the co-production group?
“In our next meeting, we'll look at how co-production is working in the IMPACT Networks, and discuss accessible communications,” says IMPACT’s Lived Experience Engagement Lead and parent carer Karen McCormick. “We’re working to establish a consistent approach to co-production, and will make recommendations to our leadership and central teams where necessary.” Karen will coordinate an annual report. Once the group have consulted on projects, it will be important to document their decisions in an accessible and inclusive way.
How can I get involved with the IMPACT Centre for Improving Adult Care?
If you’d like to be contacted about specific opportunities to engage with IMPACT’s work, you can sign up to their mailing list. IMPACT also shares information regularly on Twitter: @ImpAdultCare.
This article was created using co-production methods. The title quote is attributed to Orla Fitzsimons.
