User-led sector ‘faces threat of extinction’

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User-led organisations across the country are continuing to close, with the sector even facing a “real threat of extinction”, leading networks have warned this week.

Those user-led organisations that have found a way to survive are increasingly being side-lined from government consultations and government-funded projects, they said.

The National Survivor User Network (NSUN) estimates that about 50 more user-led organisations that were previously NSUN members have been forced to close in the last year.

This follows a net loss of more than 150 member groups in the previous year.

NSUN, which represents groups and people in England with experience of mental distress, has now warned its members: “This is having a deep impact on collectives of oppressed and marginalised people who have been campaigning to have a voice, lobbying for legislative changes and self-organising to make things better.”

It is so concerned about the continuing attack on the value of user-led groups that it is to focus its campaigning this year on this issue.

Shaping Our Lives, a national network of disabled people and service-users, was even more stark in its warning about the sector’s future.

Its latest estimates are that it has lost about a sixth of its user-led member organisations in the last couple of years, and it believes that this rate of closure is accelerating.

Professor Peter Beresford (pictured), SOL’s co-chair, said successive governments had argued for a wider range of providers of public services, but in practice this had led to a “big shift to privatisation and the dominance of big metropolitan-based charities, which are run like big businesses”. 

He said: “The great, much-valued innovation of the age has been small, local, accountable user-led organisations (ULOs) and disabled people’s user-led organisations (DPULOs), run by the groups – disabled people, mental health service-users, people with learning difficulties – they are meant to serve.”

But he said the “rising tension in service provision in the context of austerity cuts” had led to the marginalisation of these ULOs, which were now “facing serious crisis” and “a real threat of extinction”.

He called for a “radical review of both government and funding policy” in order to avert this “tragedy”.

Sarah Yiannoullou, NSUN’s managing director, said that user-led groups and networks needed to work more closely together, share their common concerns and experiences and look at collective solutions to ensure their survival.

She said the network’s members and other user-led organisations and networks had faced similar problems over the last five years.

She said: “We are finding there are very similar and common issues, with groups closing, whether it is due to lack of resources or burn-out of the leaders of our groups, there is less and less opportunity for that independent, collective and direct voice.

“So what we were campaigning about 20 years ago and feeling like we were making some progress on, now it feels as though – particularly over the last couple of years – that we are regressing.”

NSUN is now seeking funding for joint research to examine how many user-led organisations are being lost, and how well understood user-led groups are and why they are so valuable.

This week, NSUN launched a survey* that it hopes will provide evidence from user-led organisations of the challenges they are facing, the work they do, the impact they have, and the policy changes they believe are needed to support user-led groups.

NSUN also hopes the research will look at the growing use of language that “blurs the lines” between user-led and non-user-led organisations.

Yiannoullou said: “The space that user-led groups have worked hard to carve out for themselves around advocacy, peer support, involvement, participation and recovery, has become an area of income generation for other [non-user-led] organisations.”

As well as large charities, private sector and statutory bodies like NHS trusts are now involved in this work, further crowding out user-led groups and often changing the kind of work taking place in areas like peer support “beyond recognition”, she said.

Government departments, for example, will use phrases like “user groups” to describe the voluntary sector groups and organisations they have been consulting with, and don’t necessarily differentiate between user-led and non-user-led organisations, said Yiannoullou.

Such groups may have access to service-users who can take part in consultations on disability-related issues, but they are usually not run and controlled by service-users, which means the government is repeatedly breaching the UN Convention on the Rights of Persons with Disabilities and “general comment number seven”, which was agreed last autumn by the UN’s committee on the rights of persons with disabilities.

The UNCRPD makes it clear that, when developing laws and policies relating to disabled people, governments “must closely consult with and actively involve persons with disabilities, including children with disabilities, through their representative organizations”.

It defines “representative organizations” as those that are “led, directed and governed by persons with disabilities”.

Yiannoullou said: “We want to reassert and raise awareness of what the distinction is between user-led groups and user groups.

“We also want to get a sense of whether it’s just us (user-led groups) that think this is important.”

NSUN fears that the importance of user-led groups is being lost in the clamour for contracts and increasing competitive tendering.

Yiannoullou said: “It’s a real concern that user-led groups are reporting that their contributions are not being recognised and are having less and less impact.

“The smaller groups, which tend to be the user-led groups, find it really hard to compete. There’s no level playing-field.

“We need to have some high-level conversations about the value of user-led groups, what makes them different and what needs to happen to help them survive the current climate.”

Becki Meakin, SOL’s general manager, said: “The growing pressure on voluntary and community sector organisations to secure funding is evolving into a fight for survival.

“Tactics previously only used by the most aggressive profit-making companies are now becoming common place in the voluntary sector.

“Funders and commissioners need to realise that different types of voluntary and community sector organisations have different skills and strengths.

“One funding model and approach does not work for everyone.”

She added: “Recent government policy is now looking to the community to meet the gaps in provision.

“With the declining number of local user-led groups, where is the knowledge and capacity going to come from?

“It is not just the user-led movement that is stretched to its limits, but it is also the people with lived experience who have committed their time and energy, often for little reward, to providing peer support and advocacy.

“Austerity policies and service cuts have also devastatingly impacted the capacity of individuals to fight for others.”

*User-led organisations that would like to provide their own experiences and concerns can contact NSUN by email at [email protected] or fill in the online survey

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