A new peer led network is amplifying the voices of those who have experienced severe disadvantage
Expert link is turning the idea of citizen involvement on its head. We are working with those who are or have been severely and multiply disadvantaged in society by a combination of homelessness, drug or alcohol misuse, domestic violence, mental illness or poverty, who have then become expert by their experience. We are helping them to decide what they want from support services and then how to go about getting it – either at an individual level, local level or through national policy change!
Although the idea for a national organisation to represent and support those with severe and multiple disadvantage had been talked about since 2013, it is only now with changes to both the public and voluntary sector, reductions in funding from the public purse and the subsequent rise in innovative and activist based in responses, that have produced the perfect time to turn Expert Link from concept into a reality.
We recently did some research to find out from those who have experienced or are currently experiencing severe and multiple disadvantage what they would want and expect from a national organisation that was set up to represent them. The research, funded by the Lankelly Chase Foundation and supported by Homeless Link, took us on an incredible journey and led to a final report being presented to our funders.
Like all large tasks, you break them down into manageable pieces, and that that is exactly what we did to complete the research. The first stage was to ensure that we had a credible place that people could visit to discover or research Expert Link. So a crash course in social media, delivered by WordPress, Google and the Comms Team at Homeless Link ensued, and one harrowing week later we emerged, presenting ourselves in the public domain.
The next stage was to establish what questions Expert Link should ask a wider audience about what they wanted or expected of Expert Link. With that in mind we developed our first set of questions that asked what people wanted Expert Link to do for them, how it should look and feel and what values it should uphold. Armed with these we spoke to groups and individuals from across the sector and bravely entered the world of providers and commissioners to test their reactions.
“It should be an inclusive group that doesn’t give up on people.”
We then developed a second survey, based upon the original findings that we could put out to a wider audience. The responses that we got from both individuals and groups represented 4773 people from 42 locations around the country. Their message was clear and unequivocal, they want services to be designed WITH people who have lived experience, they want to challenge the public perception and the stigma they face, they want access to good services and they want to be treated equally and listened to.
“70% of respondents want an organisation that makes sure services are designed with people who have lived experience”
The learnings from the surveys and getting them completed weren’t all that we got – the learnings from the process were just as important. Once I got to talk about Expert Link the concept was very well received, but understanding why peer group hosts can be over protective, the dynamics of peer lead groups, that change can cause anxiety, and that available resources could be a barrier to overcome are key to developing a strategy to deliver what those with lived experience of severe and multiple disadvantage are clearly asking for.
“65% of respondents want an organisation that raises public awareness of the issues people face and challenges the stigma and perception of people with support needs”
For Expert Link to grow and develop, it is essential that it reflects the views of all those who have suffered severe and multiple disadvantage. In order to do that an Advisory Panel made up from those with lived experience has been set up to act as a “critical friend”, ensuring that the views of those with lived experience have been fully listened to and their values upheld.
“It would be useful to have a joint voice from all peer support groups that was able to talk to politicians and influence policy through their experiences.”
At the end of this journey we are left with a very simple question: – now that Expert Link knows what people want and the challenges that it faces, can it deliver? Well I think that we can, I think that support for Expert Link is strong, I think that the appetite and desire for change makes the time right.
“It should promote assets of people with lived experience”
We are now in the process of developing a platform for experience to be shared and learned from, which will also help us to deliver our key aims, a charter and a tool kit to help people decide what they want and then help them get it, and a national campaign that challenges the perceptions of severe and multiple disadvantage, and focuses on the positive skills and talents that people have.