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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.”

David Ford

David Ford

 

“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

* Martin Reed edits Homeless Link’s news and online magazine – martin.reed@homelesslink.org.uk@wordedmartin

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What if your story could make a change?

We all have our own stories, either it be good or bad or in the middle. Regardless of which these are our journeys to where we are today, but what if our journeys could help others. What if they could make things just that little bit easier for someone else on a similar journey. No matter what your position in life is right now, you have acquired some sort of lived experience.
It could be homelessness, drug or alcohol issues, mental health or physical health issues, mental or physical abuse, money problems, social isolation, childhood issues. The list covers so many and could go on and on. Getting through or being trapped in these, offers you experience. It could be you have managed to avoid some or all of these, again how you managed to do that is experience.
Those experiences could be good or bad. What helped or didn’t help. Where was or where wasn’t the support.
If you shared that experience and it could help someone else. Would you?
We all know the saying ” Been there, got the t-shirt “. Would it help being supported by someone who has got the t-shirt? Someone who has been in the same boat you are in. Would you open up more to what is happening?
Would you accept the advice more because they have been there?
How much would it actually help just knowing you are not alone? To have someone stand by your side and say you are not alone, together we can do this.
Wouldn’t we all regardless of our situations, love to have someone stand beside us as an equal and say ” I am here with you, we are in this together “.
We are in a world that is forever changing. Views, opinions, beliefs, opportunities, likes, dislikes, environments, experiences. Two days never the same. Changing for the good and for the bad. What we do or say changing things around us by the moment.
What if you took that chance to try and make a deliberate change. A change that would be for the good. A change that could benefit others. Even if it was only two people’s lives something you chose to do changed things for the better for them, wouldn’t that be worth it. Especially if those two people each went on to do the same for two others.
Change can happen, and can come from something so small and simple as sharing our story. The ups, the downs, the how’s. Something that to you may be so small to you, could be something so big to someone else.
We all have a story. We all have voice. We all can make changes happen not just for ourselves but for others.
There is another saying, ” The answer is staring us in the face “. Maybe that face is our reflection in the mirror?


Darren’s Story

Through my eyes, who am I?

Service user, client, customer, patient, ex-offender, offender, prisoner, criminal, A1726AY, number, addict, junkie, coke head, alcoholic, drunk, referral, claimant, benefit scrounger, benefit cheat, resident, occupant, mentally ill, manic depressive, nutter, blind, blind idiot, partially sighted, visually impaired, four eyes, disabled, Spastic, Dyslexic, problem child, brain dead, stupid, thick, naughty.

These are just a few labels that have been given to me over last 30 years by many people and some professionals. Well I am Darren yes I am a person like yourselves, just with few added extras, also I am a citizen, citizen of Stoke-on-Trent an Expert citizen with lots of lived experience in the field off multiple complex needs. I don’t remember much about my childhood! However I do remember been given these labels and still to this day at 42 years old aim still been labelled!! I was told at such an early age that I was stupid thick naughty and I would never amount to nothing. I struggle to understand why no one would ever think this would affect me later on in life. The labels given to me over many years have taken away my personal identity and I have struggled to know who I am and how I fit into what some professionals would call mainstream society, these barriers I face on a day-to-day basis and it’s really difficult to understand who I’m meant to be in society.

One my first childhood memories is back in late 70’s… I was about six years old, I remember a dark green Rover car pulled up outside my mum’s house, a tall man got out the car, dressed in light gray suit green over coat brown shoes smelling of cigarettes and extra strong mints, I could even tell you what was playing on the radio, on a memorable September day! I was pushed into the back of the car and then we drove off, I was told that I was going away for short while to a special needs school in Coventry – to stop crying and shut up -naughty blind spastic! This was my first experience with someone who was meant to be supporting me!

Oh by the way, the short time was 11 years from then… I found myself mixed up in the world off addiction and crime for almost 20 years. I went to prison in 2010 for conspiracy to supply class A drugs. In prison there was no real support for me with my disabilities, however I found myself fitting in to the regime perfectly… yes, you could say I was the perfect model prisoner. I was released from prison December 2012, I really didn’t know what I was going to do with myself!

Well let’s not look back at the past too much, it’s about looking forward to the future and all of us coming together and supporting each other to make this city of ours, a much better place for everyone to live and get the right support they need to carry on their journey to recovery and more fulfilled lives. I was invited to attend focus group in 2013 where I was told about a great new amazing vision that someone like myself, a real person living with multiple complex needs, as a voice of real lived experience, to help others in this city (of Stoke).

Since becoming an expert citizen my life has become so much better, and I have achieved so much over the last 18 months – an NVQ level 3 Advice and Guidance, which to me, is the biggest achievement in my life apart from my children. Also I enrolled on an ICT level 2 Functional Skills, also completed my brighter futures foundation in support work and for the first time in my life I am looking forward to the future. Now I’ve been given the opportunity to share my story and experiences to help promote service change in the city.

Wow what a vision… that I Darren, Expert Citizen with a real opportunity to be able to give something back to the community off Stoke-on-Trent which for many years I helped to destroy.

I am one of the lucky ones who got the right support at the right time on my release from prison, support that has been tailor-made for myself, to me this is massively important. However I keep asking myself the question – where was this support all them years ago? We all need to remember we all experts in our own lives and not one cap fits all and we all need to remember to listen to the voices of our own expert citizens to help and make Stoke-on-Trent the lead city in supporting people with multiple complex needs. All of us today have the passion, the vision, the voice, the lived experience, to make a difference. I would like to ask you this question in your eyes…

Who Am I Now Today?


Graham’s Story

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