A user-led organisation (ULO) is run and controlled by people who use health and social care services, including people with physical or learning disabilities, mental health service users, older people and their families and carers.
They have their origins in the independent living movement of the early 1980s.
User-led organisations provide advocacy, peer support, and information and advice on issues such as personal budgets, direct payments, self-assessment, support planning and employing personal assistants. They also work with statutory and other agencies to develop strategies for improving services.
The Department of Health defines a user-led organisation by three broad criteria:
- Its value base (for instance, promoting the social model of disability).
- How it is governed and managed (for example, with 75% of the members of the management committee being service users).
- The services it provides (such as advocacy and peer support).
The user-led group Shaping Our Lives has identified three key characteristics that distinguish ULOs from other voluntary sector organisations:
- They are based on clear values of independence, involvement and peer support.
- Service users control the organisation.
- Their knowledge derives from direct, lived experience.
User-led organisations are seen as key to the Putting People First personalisation agenda in England. Local authorities are required to work with ULOs to ensure that users are placed at the heart of service commissioning, design and delivery. Guidance from the Department of Health requires local authorities to support and develop such groups where they do not exist, and every local authority area is expected to have at least one ULO directly contributing to the implementation of personal budgets.
User-led organisations have many attributes that add value to the social care sector. They:
- Are important partners for local authorities engaged in the transformation of adult social care.
- Are knowledgeable on how to meet the requirements of the Disability Equality Duty, and can provide commissioners with a simple way of reaching relevant communities with personal experience.
- Can help commissioners tackle inequality, build social capital, understand prevention and commission services in ways that are more relevant and responsive to the local community.
- Can act as a single point of contact and information for commissioners, service providers and local service users. They offer expertise in areas such as advocacy, accessibility, self-help and peer support.
- Can help make local services and the commissioning cycle more effective through their knowledge about the needs of local service users. They can also contribute to the more efficient and effective use of health and social care funding.
- Can support the implementation of personalisation by helping service users navigate the health, social care and benefits systems.
- Are uniquely placed to understand how local users experience services and what they need, and can help commissioners reach seldom-heard service users.
- Can help tackle social exclusion by allowing service users to become involved in running their own organisations and (for some) to return to employment.
- Can promote wider user involvement by supporting service user representation on partnership boards. They can also help tackle health inequalities by helping service users to access the support that they need.
Barriers facing ULOs
User-led organisations are vulnerable to the same problems encountered by any small voluntary sector organisation. There are also problems that are unique to these groups. These include:
- Funding: groups often experience difficulties attracting long-term, secure, core funding.
- Lack of business acumen: they are often run by people who have been excluded from opportunities for skills development.
- Exclusion: development and training agencies, such as councils for voluntary service, do not always include ULOs in development and capacity building programmes.
- The organisations also face major barriers when tendering competitively for local authority contracts against larger firms that can put in lower bids because of economies of scale. Tendering processes may also use inaccessible information and language, and some local authorities do not include user representation on key decision-making bodies, including recruitment panels.
- To encourage the growth and development of ULOs, councils can:
- Support them to be inclusive of all sections of the community, including impairment or social care service user groups, adults of any age, people from ethnic minorities, lesbian, gay and bisexual and transgender service users, and carers.
- Ensure ULOs have access to skills and expertise by, for example, encouraging business development organisations to include them in training programmes, and signposting them to other sources of support.
- Work with ULOs to develop their capacity by “pump priming”, formal partnerships, or by placing local authority staff on secondment with such bodies and employing their members on council contracts.
- Encourage mentoring of small or new ULOs by larger, more established counterparts.
- Recognise the added value of ULOs’ knowledge and sensitivity to the needs and views of local service users.
Messages for practitioners
- User-led organisations are key to the delivery of personalisation in adult social care services.
- They can help local authorities and social care services tackle health inequalities, build social capital, promote choice and control, and be more responsive to the needs and views of the local community.
- Good practice in commissioning and strategic service development is not just about low cost; it is about meeting social objectives and being sensitive to local cultures and contexts.
- Local authorities and social care agencies can help the organisations by creating a level playing field in tendering and contracting processes and by actively encouraging their participation.
- Local authorities can foster and support the development of ULOs by providing pump priming money and seed funding, by seconding staff to work in them, and by championing them locally.
- Mainstream business development agencies should reach out to ULOs and ensure they are included in skills development, capacity building and training programmes.
Case study: Mercian ability partnership
Mercian Ability Partnership (MAP) is a user-led organisation for disabled people and their carers in south Staffordshire and north Warwickshire.
Tamworth, where MAP is based, has a high number of people of working age who have disabilities as well as younger disabled people needing help to live independently. There was nowhere in the town where people could receive advice from peers with personal experience of organising life with a disability.
MAP is staffed entirely by people who have disabilities themselves, working in paid and voluntary positions.
Staffordshire Council sees ULOs as a way to increase choice and control for people with disabilities and older people locally and is helping MAP find its feet, initially by letting the group bid for small contracts to build confidence among members and familiarise themselves with procedures.
MAP receives mentoring from voluntary sector organisation Stoke Disability Solutions. Chief executive Rodger Reed says: “Commissioners need to remember that a user-led organisation is not there as a low-cost delivery mechanism for the statutory sector; it’s there because a group of people want to have control over their own lives.”
Author Department of Health et al
Title Putting People First: working together with user-led organisations
Publisher Department of Health, 2009
Abstract This document outlines the benefits that local authorities and residents enjoy when they work with ULOs. It provides advice on how local authorities can form meaningful relationships with such bodies and outlines support provided by the Department of Health. Short case studies are included.
Author Johnston Lucy
Title The capacity of disability organisations to engage with public authorities
Publisher Scottish Government Social Research, 2009
Abstract This report is one of a series of three produced as a result of research into disability organisations in Scotland and their capacity to influence public authorities. Based on interviews and group discussions with 87 disability groups.
Author Branfield Fran
Title Relationship matters: building our knowledge and networks: report of regional events
Publisher Shaping Our Lives, 2009
Abstract This report prepared by Shaping Our Lives highlights the importance of supporting networking if long-term users of health and social care services are to be involved as active citizens in their communities.
This article is published in the 5 August 2010 edition of Community Care magazine under the headline Allowing User-led Groups to Flourish