A national service for representing people living with severe and multiple disadvantage

2nd February 2016, words by David Ford

Expert Link is turning the idea of citizen involvement on its head. We are working with those who are or who have been severely and multiply disadvantaged in society (living with a combination of homelessness, drug or alcohol misuse, domestic violence, mental illness and poverty) because they are the experts by their experience. We are helping them to decide what they want from support services and then how to go about getting it – 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 has 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 responses that we find ourselves in the perfect time to turn this idea from concept into a reality – under the name of Expert Link.

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 us to a report, which summarises our findings.

Like all large tasks, you break them down into manageable pieces, and 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 and research Expert Link. So, a crash course in social media – delivered by WordPress, Google and the communications team at Homeless Link – ensued, and one hectic 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 and 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 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 results of the surveys isn’t the full picture; the learning that we got out of the entire engagement process is just as important. Once we got to talk about Expert Link the concept was very well received, but we also need to understand why peer group hosts can be over protective; the dynamics of peer-led groups; that change can cause anxiety; and that available resources could be a barrier to overcome. Understanding these findings is key as we develop 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 of 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 we think that we can, we think that support for Expert Link is strong and we 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 experiences to be shared and learned from, which will also help us to deliver our key aims, a charter and a toolkit to help people decide what they want and then help them to get it. We are also developing a national campaign that challenges the perceptions of severe and multiple disadvantage, which focuses on the positive skills and talents that people have.

If you want to know more or, even better, become involved, you can contact Expert Link via their website at www.expertlink.org.uk.

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