Our voice matters. Are you listening?
Author: Martin Reed*
Expert Link is a new peer-led network of people with direct experience of multiple and complex issues, such as homelessness and addiction. It aims to amplify people’s voices and make sure they’re involved in the design of the policies and services that support them. But why is it needed? And how should it work?
“There are vast amounts of experience, talent and knowledge out there, among people who have experienced complex issues first-hand. But how often is it ignored? How do we stop it being ignored?”
These are questions that David Ford has asked many times over the years – both while he was homeless and working through addiction and mental health issues, and since 2010 when he started working in the homelessness sector. With the launch of Expert Link, he now poses those questions daily – to audiences ranging from professionals and the people they work with, to funders and local politicians – and he’s starting to get answers.
Over the past few years, more and more organisations have been seeing the benefits of involving the people they support in designing and evaluating services, and in their campaigning work.
Where these peer led groups are enabled and supported, there is evidence that they can make a real difference. But, David argues, that is only the beginning. When it comes to involving people in the design of services that support them, we need to think much bigger and we need to work better across sectors.
With funding from Lankelly Chase and backed by Homeless Link, it is early days for Expert Link. David is bringing together a steering committee and has launched a survey to help gauge what people will want Expert Link to achieve. By amplifying the voices and views of people with direct experience of homelessness, mental health issues, substance and alcohol misuse, offending, domestic violence and abuse, David believes that the policies, commissioning and services that affect them can only improve.
“Many of those people have been able to come together in groups,” says David, “like the National Youth Reference Group, Expert Citizens in Stoke, Homeless Link’s Expert Advisory Panel. I’ve seen how bringing those voices to the table and making sure they’re heard can have a massive impact.”
But, David believes, there is always a danger of organisations paying lip service to the idea of “service user involvement” – a phrase that he prefers to avoid.
“It mustn’t be tokenistic,” he says. “Organisations need to question whether they’re meeting with that peer led group or recruiting former beneficiaries to their board because they believe it makes a difference – or are they doing it because they feel they should, or to meet a funding requirement?”
“The last people anyone listened to”
When David became street homeless in 2009, he realised he didn’t have only homelessness in common with others he met on the streets.
“Many of us had issues with drugs,” he says, “many had seen the inside of a cell, many suffered from mental illness. We had dysfunctional childhoods and abuse in common – and now we had all found ourselves sleeping rough.”
They had something else in common too: of all the services they came in contact with they were rarely ever asked for their opinion. In the services designed to support and enable them, they often felt invisible.
When David first moved into a homelessness hostel in March 2009 he saw first-hand how the support he was offered could be improved. “It felt disjointed and dysfunctional to me,” he says, “so it was very difficult to have any trust that it could help me. But the really sad part about it was that no matter how loud anyone shouted, we were the last people anyone listened to. We should have been the first.”
David couldn’t accept this. The experience drove him to try and change it from the inside.
Since then, he’s been involved in founding and running numerous groups and services – including a Salvation Army day centre, The Link drop-in centre, and his own information and guidance clinic. For two years, he was chair of Homeless Link’s Expert Advisory Panel, a group of men and women who have experienced homelessness and who advise the organisation, other services and the Government on effective policy and practice. He has worked as a consultant for local authorities and services throughout England and recently joined the Board of London homelessness charity Thames Reach.
Expert Link is the logical next step on a journey that is all about improving the quality of support offered to people when they need it.
Relationships and trust
“Too many services operate in silos,” he says. “Homelessness services deal with homelessness. Addiction recovery services deal with addiction. Mental health services deal with mental health – and so on. Many of those services have well organised peer-led groups operating within them. At best, they’re listened to but only on sector specific issues – at worst they aren’t listened to at all.
“Those groups almost always represent people with more than one support need, and those needs don’t exist in isolation. They’re all connected, blurred together – homelessness, addiction, mental health, abuse. So in bringing together all those peer led groups from different sectors, my hope is that Expert Link will help to bridge those gaps, with common values and a common purpose, and help make sure people are heard.
“A lot of it boils down to two things, relationships and trust – between people and services, between sectors, between commissioners, politicians and everyone else. You’ll have the wrong relationships and lots of mistrust if people who use services are excluded from their design.”
The value of lived experience
Funding for Expert Link has come from Lankelly Chase, an organisation with a strong commitment to making sure the voices of people living on the margins of society are listened to and acted on. They already fund Voices from the Frontline, a project to bring the voices of people with multiple needs to the heart of policy debate, and in January they published Hard Edges, a collection of twelve accounts by people with experience of severe and multiple disadvantage.
But why do we need Expert Link? “Understanding the exact nature of these issues is a difficult task,” says Jess Cordingly, Director of Social Innovation at Lankelly Chase. “If we don’t include the perspective of people who live with homelessness, addiction and other issues, there’s a danger that we, as professionals, stumble blindly on, offering valuable but limited support that misses something.”
Alice Evans, Director of Systems Change at Lankelly Chase, believes that involving people with lived experience as equal experts is essential for the design of good services. “When it comes to working out what severe and multiple disadvantage looks like, and what good practice is, there’s also a huge resource of people who can help practically, intellectually and emotionally. We lose that if people with lived experience don’t have an equal space around the table. Where people are included properly, it brings new perspectives and ideas that help us all tackle the issues more effectively.”
“People need to be heard,” says David Ford. “If we want systems to change, we have to lead by example. I want Expert Link to be at the heart of that.”
If you have experienced homelessness, mental health issues, substance and alcohol misuse, offending, domestic violence or abuse – or if you support people who have – please take part in or share this survey to help decide what Expert Link can be.
Author: Martin Reed* / 27 October 2015