Organisations representing disabled people and people who have been addicted to alcohol or drugs are the beneficiaries in Scotland of a new National Lottery programme to back those with life experience to shape services.

An £800,000 National Lottery-funded leadership programme is to fund 20 organisations across the UK to support those with ‘lived experience’ to develop as leaders within their communities.

Among those benefitting in Scotland are people who have experienced problematic substance use and recovery, through an award to the Scottish Recovery Consortium.

Another Scottish group will support leaders among disabled people to influence services. One of the projects south of the border promotes Muslim and minority women to take on leadership roles.

The idea of the Lived Experience Leaders Pilot Programme is to put people with first-hand experience of social issues in a position to influence policy and services.

With an award of £50,000, the Scottish Recovery Consortium will establish a National Lived Experience Network across Scotland, while Inclusion Scotland is receiving £49,972 to bring together a group of disabled leaders.

Michaela Jones is the National Lived Experience Officer for the Scottish Recovery Consortium and she says she hopes the support will ensure that noone has to ‘lose it all’ as she did when a lifelong alcohol problem caught up with her (see panel).

“If we continue to design systems and make policy decisions that do not take into account the voices of people who are directly impacted by those decisions, we will always be missing an important part of the puzzle,” she says.

“This award will enable us to work directly with people with Lived Experience and their families to ensure that they can bring their own unique perspective to the table. After all, we all want the same thing, for everyone to have the best chance of getting and staying well.”

In her eyes there is plenty that coculd be changed ofor the better in the system. “I wasn’t ready for the level of discrimination I experienced - I was treated appallingly by the DWP. Because I’d declared myself bankrupt, I was told I’d made myself ‘intentionally’ homeless.”

When she went to her GP she came away with nothing. “I wasn’t even told about support I could have accessed through the community.”

“Detoxing wasn’t really available. There are private clinics but not when you are bankrupt.”

For most people recovering only happens with the support of others in the community, she says. “There is very little on offer unless you are perilously ill.”

She had made an unsuccessful attempt on her own life, swallowing pills, but this didn’t count as ‘perilously ill’ she adds.

The price of getting it wrong is high, she adds. “People talk about the deaths from drugs, but probably triple the number are dying from alcohol in Scotland. We are losing so many people all the time. And some of that is due to mistakes we can avoid.”

Announcing the funding, Maureen McGinn, Scotland Chair of the National Lottery Community Fund, said the new grants would enable organisations to put people with first-hand experience of social issues in the lead.

The Scottish Recovery Consortium and Inclusion Scotland and other organisation benefiting from the Lottery cash will be expected to build capacity for those with lived experience to become leaders within their community.

They will do this by, for example, providing training for emerging leaders, improving governance structures and enabling people to feed into the development of services and policies affecting them.

Ethan Young, Civic Participation Officer at Inclusion Scotland, said: “Disabled people have a wealth of lived experience and skills that too often go untapped. Instead of simply being the subject of consultation there needs to be recognition of our role as change-makers and leaders.”

Mr Young added: “We are delighted to receive a grant for our Leaders with Lived Experience pilot project. We will use co-production methods to develop a leadership programme that works to promote lived experience leadership and remove the barriers to leadership development opportunities.

Ms McGinn said: “The voices of those with lived experience have frequently been absent from important discussions such as those on assets, services and resources. This funding should help remedy that. In Scotland, people living with disabilities and those with direct experience of drug or alcohol misuse will use their first-hand experience to create positive change for others.”