Userled organisations across the country are cont

first_imgUser-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-ledorganisations that have found a way to survive are increasingly being side-linedfrom government consultations and government-funded projects, they said.The National Survivor UserNetwork (NSUN) estimates that about 50 more user-led organisationsthat were previously NSUN members have been forced to close in the last year. This followsa net loss of more than 150 member groups in the previous year.NSUN, which represents groups and people in Englandwith experience of mental distress, has now warned its members: “This ishaving a deep impact on collectives of oppressed and marginalised peoplewho have been campaigning to have a voice, lobbying for legislative changes andself-organising to make things better.”It is soconcerned about the continuing attack on the value of user-led groups that itis to focus its campaigning this year on this issue.ShapingOur Lives, anational network of disabled people and service-users, was even more stark inits warning about the sector’s future.Its latestestimates are that it has lost about a sixth of its user-led memberorganisations in the last couple of years, and it believes that this rate ofclosure 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: “Thegreat, much-valued innovation of the age has been small, local, accountable user-ledorganisations (ULOs) and disabled people’s user-led organisations (DPULOs), runby the groups – disabled people, mental health service-users, people withlearning difficulties – they are meant to serve.”But he saidthe “rising tension in service provision in the context of austerity cuts” hadled to the marginalisation of these ULOs, which were now “facing serious crisis”and “a real threat of extinction”.He calledfor a “radical review of both government and funding policy” in order to avertthis “tragedy”.SarahYiannoullou, NSUN’s managing director, said that user-led groups and networksneeded to work more closely together, share their common concerns andexperiences and look at collective solutions to ensure their survival.She said thenetwork’s members and other user-led organisations and networks had facedsimilar 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 ourgroups, there is less and less opportunity for that independent, collective anddirect voice. “So what wewere campaigning about 20 years ago and feeling like we were making someprogress on, now it feels as though – particularly over the last couple ofyears – that we are regressing.”NSUN is nowseeking funding for joint research to examine how many user-led organisationsare being lost, and how well understood user-led groups are and why they are sovaluable.This week,NSUN launched a survey* that it hopes will provide evidence from user-ledorganisations of the challenges they are facing, the work they do, the impactthey have, and the policy changes they believe are needed to support user-ledgroups.NSUN alsohopes the research will look at the growing use of language that “blurs the lines”between user-led and non-user-led organisations.Yiannoullousaid: “The space that user-led groups have worked hard to carve out forthemselves around advocacy, peer support, involvement, participation andrecovery, has become an area of income generation for other [non-user-led]organisations.”As well aslarge charities, private sector and statutory bodies like NHS trusts are nowinvolved in this work, further crowding out user-led groups and often changingthe kind of work taking place in areas like peer support “beyond recognition”,she said.Governmentdepartments, for example, will use phrases like “user groups” to describe thevoluntary sector groups and organisations they have been consulting with, and don’tnecessarily differentiate between user-led and non-user-led organisations, saidYiannoullou.Such groupsmay have access to service-users who can take part in consultations ondisability-related issues, but they are usually not run and controlled byservice-users, which means the government is repeatedly breaching the UNConvention on the Rights of Persons with Disabilities and “general commentnumber seven”, which was agreed last autumn by the UN’s committee onthe rights of persons with disabilities.TheUNCRPD makesit clear that, when developing laws and policies relating todisabled people, governments “must closely consult with and actively involvepersons with disabilities, including children with disabilities, through theirrepresentative organizations”.It defines“representative organizations” as those that are “led, directed and governed bypersons with disabilities”.Yiannoullousaid: “We want to reassert and raise awareness of what the distinction isbetween user-led groups and user groups.“We alsowant to get a sense of whether it’s just us (user-led groups) that think thisis important.”NSUN fearsthat the importance of user-led groups is being lost in the clamour forcontracts and increasing competitive tendering. Yiannoullousaid: “It’s a real concern that user-led groups are reporting that theircontributions are not being recognised and are having less and less impact.“The smallergroups, which tend to be the user-led groups, find it really hard to compete.There’s no level playing-field.“We need tohave some high-level conversations about the value of user-led groups, whatmakes them different and what needs to happen to help them survive the currentclimate.”BeckiMeakin, SOL’s general manager, said: “The growing pressure on voluntary andcommunity sector organisations to secure funding is evolving into a fight forsurvival. “Tacticspreviously only used by the most aggressive profit-making companies are nowbecoming common place in the voluntary sector.“Funders andcommissioners need to realise that different types of voluntary and communitysector organisations have different skills and strengths. “One fundingmodel and approach does not work for everyone.”She added: “Recentgovernment policy is now looking to the community to meet the gaps inprovision.“With thedeclining number of local user-led groups, where is the knowledge and capacitygoing to come from?“It is notjust the user-led movement that is stretched to its limits, but it is also thepeople with lived experience who have committed their time and energy, oftenfor little reward, to providing peer support and advocacy. “Austeritypolicies and service cuts have also devastatingly impacted the capacity ofindividuals 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 surveyA note from the editor:Please consider making a voluntary financial contribution to support the work of DNS and allow it to continue producing independent, carefully-researched news stories that focus on the lives and rights of disabled people and their user-led organisations. Please do not contribute if you cannot afford to do so, and please note that DNS is not a charity. It is run and owned by disabled journalist John Pring and has been from its launch in April 2009. Thank you for anything you can do to support the work of DNS…last_img