Social Care’s Other Crisis: the threat facing ‘user led organisations’

Peter Beresford OBE

Peter Beresford OBE is Professor of Citizen Participation at the University of Essex, Co-Chair of the ULO Shaping Our Lives and a long term user of mental health services.

While we are constantly hearing about the long term crisis of social care in England, another previously hidden crisis has now begun to emerge; that of the collapse of one of the most valued sectors that has developed in this field – organisations which disabled people and other service users have themselves established and run. Until recently few have known about this emergency, yet it could put at risk some of the most pioneering and innovative work that we have seen in British social care. 

Since the introduction of the National Health Service and Community Care Act in 1993, there have been requirements for service users and carers to have a say in health and social care. These have developed and extended over time (https://www.england.nhs.uk/wp-content/uploads/2017/05/patient-and-public-participation-guidance.pdf ). One of the Jewels in the Crown has been the development of what have come to be called ‘user led’ or disabled people led organisations (ULOs/DPULOs). Over the years, a strong network of such local ULOs with national umbrella organisations to support and give them a strategic lead have developed.  

For a while government even had a national strategy for independent living, one of whose key strands was to support such a national network (https://www.disabilityrightsuk.org/sites/default/files/pdf/IndependentLivingStrategy-A%20review%20of%20progress.pdf ).. Research has shown that such organisations have been particularly valued by service users as approachable and sensitive resources to provide support, organize help and offer advice and information. It is they who initiated the direct payments schemes that have brought real independence to many disabled people as well as the alternatives to traditional medicalised services that have enabled some mental health service users to live a positive life beyond the psychiatric system. Most of all they have offered an effective independent voice to service users as a basis for improving services and support and extending their cost effectiveness (https://www.scie.org.uk/publications/guides/guide36/understanding/what.asp ).

Yet such involvement is now at real risk. Service users and their organisations are expressing increasing concerns about stalled progress. Local mental health and disability ULOs have been closing at a high rate, facing big problems of inadequate funding and financial insecurity. ULOs which offer the most direct and effective expression of user voices are being lost at an unprecedented rate.

Key networks like the National Survivor User Network (NSUN) and Shaping Our Lives have themselves also been facing serious funding difficulties (https://www.disabilitynewsservice.com/office-for-disability-issues-taking-no-action-to-halt-closure-of-dpos/ ). Yet there doesn’t seem yet to be widespread or official recognition of this crisis.

Without these organisations we can have little hope that the pressure for much valued user and carer participation will be maintained or the championing of the best most economic support will retain an advocate.

However in an age of austerity, which in social care at least, seems far from over, despite the fact that such ULOs have constantly delivered more bangs for their bucks, their future seems highly uncertain. At a time when local authorities have been encouraged to commission down to a price, rather than up to a standard, we have seen many examples of ULOs with strong track records of delivering outstanding support for personal budget users and others lose out on contracts bid for by bigger organisations that may lack the necessary skills or track record to ensure a quality service but which are highly geared up to win a race to the bottom in any bidding war (https://www.disabilitynewsservice.com/user-led-network-could-close-as-latest-victim-of-competition-from-big-charities/ ). 

It’s time for policymakers to review the unintended negative effects of such ill-thought out policy. ULOs don’t just offer high quality services, they also provide in spades the kind of high quality and accessible training, job and career opportunities to the disabled people they employ that successive governments have highlighted as essential to match the raised employment rates for disabled people they are chasing. Equally important is the need to explore more equitable funding arrangements, which stop penalising small, valued ULOs and privilege instead large high profile and as we have been seeing recently, sometimes unaccountable and inefficient ‘big charity’. Setting up some kind of pooled funding resource for such ULOs could both be a way of getting out of the present emergency and finding our way to a much more positive and sustainable future for such truly ‘co-produced’ social care.












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