A charity is warning that scores of user-led mental health groups across England have been forced to close, many of them after losing out to large mental health charities and private sector organisations that have been “sweeping up” their contracts.
Research by the National Survivor User Network (NSUN) has found that 221 of its 822 member organisations – most of them user-led groups and all of them smaller, voluntary sector mental health groups – had closed since January 2015.
Many have been forced to close because their contracts to promote user-involvement or provide advocacy have been snatched by large mental health charities and private sector organisations, which have often under-cut them.
Previous reviews of its membership had found it had lost 20 or so members in a year and gained a similar number, but the latest review was “quite different” and “extreme”, with the loss of 221 and the addition of 55 new members, according to Sarah Yiannoullou, NSUN’s managing director.
She fears that many other small, user-led mental health groups that were not part of the network will also have vanished over the last couple of years.
She said the loss of so many organisations meant that a lot of the support that was previously available in the community for mental health survivors and service-users was disappearing, leaving them more isolated.
She said: “Particularly at a time when people are being shifted from secondary care into primary care, so losing specialist support around their mental health, often the voluntary sector and community groups is where their support comes from.”
She said she was “very concerned” at the loss of so many groups.
“Over the years we have seen a trajectory of user-led groups really establishing themselves and diversifying.
“Many started as self-support groups in people’s living rooms, some have been more formal around campaigning and involvement work, others have been more social or supportive and special interest, and I think that kind of diversity and tapestry of different types of support is really under threat of being lost completely.”
She warned that a lot of that work was now being “absorbed” into the work of larger organisations, in a “Tesco approach” that is leading to providers that “do everything”.
She said: “They are not user-led and they are not always terribly user-friendly.”
Often the larger organisations have become more “sophisticated” in the way they have “co-opted” and “hijacked” the language of peer support, advocacy, involvement and recovery.
Many of the groups have closed because the service-users running them have been left “burned out” and “exhausted” by the pressures of trying to keep them going and have “shut up shop for the sake of their own health and wellbeing”.
She said: “They take a hell of a long time, years and years to develop and establish these groups, and they can disappear overnight.”
Many of the groups closed because they lost funding from local authorities or failed to secure renewed grants from charitable trusts, which are facing more competition for their resources, she said.
NSUN itself has found that its own success rate in applying for grants has fallen from 80 per cent of applications to between 20 and 30 per cent, partly because of higher competition over the last couple of years.
Yiannoullou said: “Large providers seem to be sweeping up quite a lot of the contracts that used to be available for user-led groups around involvement [of service-users in the planning, development and commissioning of services], peer support and advocacy.
“Larger providers are moving into the areas that user-led groups have fought quite hard to carve out for themselves over the last 10 to 20 years, particularly around advocacy, peer support and involvement.
“They have departments that work on these things so it’s very difficult for user-led groups to compete, because they haven’t got the capacity, the capability.”
She said it was important that advocacy and involvement work was independent of the providers of services, which was why it should be provided by smaller, user-led groups.
Yiannoullou said NSUN was now trying to encourage the larger providers to “work in collaboration with local user-led groups rather than in competition because they are going for contracts that they wouldn’t necessarily have been interested in a few years ago”.
She said her personal opinion was that this was for financial reasons and that some of the larger organisations had adopted “more aggressive business approaches” and that “any contracts that are available will be gone for”.
She said that NSUN wanted to raise awareness of the problems facing local groups, by linking up with allies, and possibly by trying to persuade the larger service-providers and commissioners to “think about their commissioning approaches” or by asking them to sign up to a pledge.