Personalisation and putting service users in control


Title: Mapping the Capacity and Potential for User-Led Organisations in England: A Summary of the Main Findings from a National Research Study commissioned by the Department of Health.
Authors: Sue Maynard Campbell, Alice Maynard and Maggie Winchcombe
Institutions: Equal Ability CIC, Future Inclusion and Maggie Winchcombe Consulting.


In 2005, the government’s strategy document Improving the Life Chances of Disabled People recommended that by 2010 each local authority area should have a user-led organisation (ULO) modelled on existing centres for independent living(CILs). The local availability of a ULO is seen as vital to the successful introduction of a brokerage role in respect of personal budgets, but little is known about their current availability, strengths and weaknesses. The Department of Health commissioned this research study to examine the current role and capacity of existing local ULOs, and their potential contribution towards achieving the Life Chances recommendation.


The research set out to address two key questions:

What is the nature and capacity of existing ULOs and what factors appear to affect their sustainability and effectiveness?

What factors inhibit or facilitate ULOs, and how far could existing local organisations contribute to their development?

The methodology consisted of six linked elements: a literature review a series of regional conversations with disabled people a national mapping exercise of ULOs six “local snapshots” showing the mix of current provision case studies of 26 specific ULOs and some basic information to explore cost-effectiveness. Planning for the work began in August 2006, and the full report was presented to the Department of Health in May 2007. It was published on the Department of Health website in September 2007.

The work of the research team was rooted in the social model of disability, and used the following two key definitions:

User-led organisation: one where the people the organisation represents have a majority on the management committee or board, and where there is clear accountability to members and/or service users

Centres for independent living: grass-roots organisations run and controlled by disabled people to have control over their lives and achieve full participation in society.


The study comes to four main conclusions:

Current availability of ULOs: Few localities appear to have an existing ULO as defined in the study – 647 possible local organisations were identified. However, it proved difficult to obtain detailed information, and the study concludes that many do not function as a CIL. Where ULOs could be identified, availability was locally variable – over half of localities had only between one and five, and 12% had none at all.

The largest proportion of ULOs had been established by people with particular impairments for self-help and peer support, but very few listed their governance arrangements. The most frequent source of funding was local authorities and some charitable trusts.

Success factors: The report identifies a number of factors associated with a successful ULO. A critical issue is how such organisations are treated within “the local authority environment” – where they fit into local spending patterns, for example, and whether a strong user voice is nurtured or neutered. Other critical success factors included: having the resources to be pro-active in reaching the community having adequate core funding renewable for reasonable periods a fully trained board and staff and the ability to influence local policymakers.

Barriers to success: Local authorities are most likely to make their funding and contracting decisions on value for money and track record, and this can favour the older, larger charities. This in turn can result in ULOs becoming inward-looking as they seek funding assurances and simply try to maintain core services – a predicament that will be exacerbated by the finding that ULOs tend to lack business and financial skills.

Future development: The report concludes that if the Life Chances recommendation is to be met, it will be important, for all of its current shortcomings, to build on what exists. It is said that this can happen in two ways: successful ULOs “buddy” other localities to help them “grow” a ULO, or existing ULOs are enabled to develop into ULOs modelled on CILs. The authors accordingly recommend further work on the production of national guidance, capacity building, attention to funding issues and an exploration of cost-effectiveness.


If the new personal budgets are to work they will need to be underpinned by organisations that understand the barriers to self-determination and are committed to helping people have control over their lives – developing effective ULOs is therefore vital to successful implementation of the personalisation agenda.

The research vividly reveals how far there is to go for this to be the case. However, unlike many research studies, this one has had an immediate impact on government policy, with the establishment by the Department of Health of the User-Led Organisations Development Fund – an allocation of £850,000 in the financial year to support the development of about 10 user-led action and learning sites. The aims of the fund are to:

Increase the capability and capacity of existing ULOs to meet specified “design criteria”.

Enable the establishment of ULOs where none exist.

Generate practical solutions that can be shared.

While this initiative is to be welcomed, it is relatively small beer in the light of the limitations of current practice as revealed in the research study – indeed, the ULO Development Fund allocation is dwarfed by the £4.2m award to charities from the Big Lottery Fund to help build management and organisational systems in user-led disability bodies.

As the research authors point out, the key factor here is the receptiveness of the local authority to the whole idea of involving, engaging and empowering service users. Despite much improvement over recent years, it remains the case that much consultation and involvement is cosmetic.

This problem seems to be understood at national level, and the new Department of Health circular, Transforming Social Care, gives detail on how the new Social Care Reform Grant should be used. Among many other matters, it is said that by 2011, every council will have in place an enabling framework to ensure people can exercise choice and control with accessible advocacy, peer support and brokerage systems, with strong links to ULOs. Specifically, it is said that where ULOs do not exist there will need to be a strategy to stimulate and foster local organisations.


The cited research is available in a range of formats (including MP3 audio) on the Department of Health website

Cabinet Office [2005], Improving the Life Chances of Disabled People. Prime Minister’s Strategy Unit

The research was preceded by a very useful discussion paper on ULOs/CILs by Jenny Morris

Guidance on the User-led Organisations Development Fund

The Transforming Social Care circular

Bob Hudson is visiting professor of partnership studies at the School of Applied Social Sciences, University of Durham

This article appeared in the 21 February issue under the headline “Putting service users in control”


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