A commissioner’s guide to developing and sustaining local user-led organisations

Why develop and strengthen ULOs: The added value of ULOs

The policy endorsement of ULOs is based, in part, on the fact that ULOs offer unique added value. This is because ULOs are founded on shared, core values which have arisen from the lived experiences of local people who use services.

A brief summary of the broad difference ULOs can make is outlined below.

ULOs can be a one-stop-shop

ULOs can act as a single point of contact and information for commissioners, service providers and local people who use services. They are a one-stop-shop resource with expertise in areas such as advocacy, accessibility, self-help and peer support.

ULOs help deliver effective services and commissioning

The knowledge and skills held by ULOs – such as knowledge about the needs of local people who use services, and the impact of services in the local community – can help make local services and the commissioning cycle more effective.

ULOs can support personalisation

ULOs can support the implementation of personalisation by helping people who use services navigate the health, social care and benefits systems. Research indicates that direct payments have been more successful in areas where there has been a ULO to support their implementation (see for example, Bewley and McCullock, 2004; Murray et al 2006).

ULOs are an authentic voice

The voice of ULOs is legitimate and credible, both to commissioners and other people who use services, because it is based on direct experience. ULOs hold strong values that reflect local people who use services’ views. They are uniquely placed to understand how local people who use services experience services and what they need. ULOs can also help commissioners reach seldom-heard people who use services.

ULOs can help to tackle social exclusion

ULOs provide an opportunity for people who use services to get involved in running their own organisations and through doing this increase their skills and confidence. They can also be a pathway for people who use services to get involved in all aspects of service delivery and development, for example, through supported service user representation on partnership boards. ULOs can help address health inequalities by supporting people who use services to access the support that they need (DH 2007).

The evidence of value added-by ULOs: user voice

User-led organisations have formal and informal mechanisms for representing the voice of disabled people locally.

Establishing an effective relationship with a ULO can enable more choice and control for users of care and support. Conflicts of all kinds arising from voice-based activity (of interest, of independence – for example campaigning and/or lobbying) are generally anticipated in theory but happen rarely in practice.

Representing user voice can be broken down into different elements: capturing views, aggregating views, analysing and synthesizing views and representing views.

ULOs can:

• coordinate user networks, which are an effective way of channeling user views on their local social care system
• coordinate coproduction and user engagement mechanisms to contribute to every part of the commissioning cycle: analyse, plan, do, review
• call upon their local community networks and partnerships to ensure all seldom-heard groups are reached
• play a role in quality assurance: they can capture intelligence on how the local social care market is operating in practice.

If ULOs also provide services, concerns about conflicts of interest rarely occur in practice. Indeed, ULOs can work constructively with local authorities to develop the changing social care market and landscape. Furthermore, ULOs can also harness the lived experience of disabled people to build and develop community capacity, for example in the form of peer support.

Evidence of effectiveness

• harnessing the voice of disabled people locally has both quantitative and qualitative benefits
• data from Department of Health on LINks (HealthWatch from 2013), which empower people in the community to have their say or influence local health and social care services, suggests savings of £4.10 for every £1 invested in LINks
• studies on community development which harness local community’s social capital suggest this approach can save between £3 to £3.80 for every £1 invested
• community Navigator schemes save at least £900 per person engaged in the first year alone
• the user-led mental health Personalisation Forum Group is estimated to save some £250,000 per year through using users’ social capital rather than only statutory services
• Demos reported that coproduction between ULOs and local authorities helped to mitigate or minimize effects of difficult decisions regarding budget changes and/or de-commissioning
• beyond social care, there is a higher incidence of reporting of disability hate crime where independent support services through ULOs exist
• An evaluation by the Scottish Government suggested coproduction of two local housing strategies in Scotland led to better outcomes for tenants and more efficient use of housing resources

The evidence of value added by ULOs: service delivery

ULOs typically have legitimacy and credibility from the perspective of both users and commissioners, and can provide a user-led contribution to all parts of the care and support process.

ULOs operate on both the supply- (i.e. service delivery / business) and demand- (i.e. user representation/voice) sides. They balance these roles to uniquely add value to the local social care economy (and beyond).

ULOs can deliver a range of services drawing on the lived experience of users. Such services typically support people to navigate the care and support system, rather than deliver services at the end. The offer of ULOs can include:

• information, advice and guidance
• supported self-assessment
• support planning
• brokerage
• (non-complex) supported reviews
• personal assistant  recruitment and employment support
• training for employers and employees
• advocacy services.

ULOs are increasingly delivering services that people can purchase using personal budgets too, including:

• domiciliary care and support
• payroll services
• equipment services
• leisure services.

ULOs can also act as hubs for coordinating and managing user-led and wider voluntary and independent sector provision.

Beyond social care, ULOs also offer a wide range of services, including (but not limited to):

• welfare/benefits advice
• training, especially disability equality training
• access auditing
• third party reporting centres for hate crime
• alternative format translation.

Evidence of effectiveness

• choice and control in service delivery is an important aspect of the social care economy – valued both by users and government
• 89 per cent of people in an area who experienced user-led IAG secured a direct payment, compared to 13 per cent who used LA-led provision (from ecdp)
• POET survey and ODI’s Support, Advocacy and Brokerage project both indicated people who had support from ULOs had better support for navigating the care and support system and that achieved better outcomes
• 100 per cent of people who used independent, user-led support planning service secured a direct payment and felt that they had more choice and control, compared to 17 per cent who used LA-led support planning (from ecdp)
• the Charity Commission reported that 59 per cent of people agree they trust charities more if they are providing services within their local community
• this support is also deliverable in crisis situations – a good example of this is Leeds User-Led Crisis Service http://www.lslcs.org.uk/
• evidence from Right to Control Trailblazers indicates that ULOs can help people to coordinate their care and support across different funding streams. This is partly because ULOs are more nimble in responding to user needs and are able to “join the dots up on the ground” across different (public) bodies.