Engaging people in adult social care and co-production: what’s the best evidence?

The voice and experience of people who use services in shaping and delivering adult social care has long been a preoccupation of mine. It’s so obvious a way of working and understanding to me that even now I’m bemused and confuddled more than I should be by how ubiquitous good engagement and co-production isn’t.

Anyway, I’ve been lucky enough to be asked to write a bit about this for research in practice for adults (ripfa) as part of a forthcoming collection they’re producing. The focus is on what the evidence says about how properly involving people in the design and delivery of adult social care makes a difference (in whatever way and at whatever level).

As something of a geek I have a pretty good sense of what the best bits and sources of evidence are, but one person’s approach for this type of thing is never as good as that of the crowd. I was therefore hoping colleagues might share with me any evidence or practice they think it’s worth highlighting on engagement / co-production.

Any information is useful; if people could share any evidence in particular about the following, though, then that would be particularly great!

  • How do different groups want to be involved in social care delivery and design?
  • Which groups are at most risk of not having their voices heard, and how can we ensure they are included?
  • What should we do when people can’t, or don’t want to be involved in their own social care?
  • What’s the best evidence around on the involvement of individuals in their own care planning or assessment and general person-centred planning approaches?

Though the focus of the work is on adult social care, evidence is limited to just this area: stuff from the world of health is as useful as anything from social care.

Feel free to share via the comments here, via Twitter (I’m @rich_w) or via email (rich DOT watts AT ndti DOT org DOT uk).

Thanks in advance for anything anyone is able to share. As always, I’ll share back what is produced as a result of this work, as well as a collection of the best resources found and shared on this topic.


#dpulo representing the voice of disabled people locally: overview

research in practice for adults kindly asked me to write a contribution to their “Strategic Briefings” series, on the topic of Disabled People’s User-Led Organisations. Below I’ve extracted and amended the section about DPULOs and the voice of disabled people. The publication will be available from ripfa’s website soon.

DPULOs are run by and for disabled people and uniquely add value to the services they deliver. They have formal and informal mechanisms for representing the voice of disabled people locally.

Establishing an effective relationship with a DPULO 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) are generally anticipated in theory but happen rarely in practice.

What this work looks like

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

DPULOs 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 DPULOs also provide services, concerns about conflicts of interest rarely occur in practice. Indeed, DPULOs can work constructively with local authorities to develop the changing social care market and landscape. Furthermore, DPULOs 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 DPULOs 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 DPULOs exist
  • An evaluation by the Scottish Government suggested coproduction of 2 local housing strategies in Scotland led to better outcomes for tenants and more efficient use of housing resources

Options for early, effective action

To make the most out of any local DPULO that exists, below are some effective options that are relatively easy to undertake:

  • Consider enabling DPULOs to administer existing or new voice-based mechanisms in the local area, such as Partnership Boards or HealthWatch
  • Consider establishing or maintaining a PB / DP User Network for regular qualitative input on progress towards personalisation
  • Share contact details of local DPULOs to every user of the social care system in the area
  • Consider establishing a strategic partnership with a DPULO(s) in the area. One practical effect of such partnerships can include seconding staff to the DPULO or having DPULO staff shadow Council staff
  • Broaden consideration of the role of DPULOs so they focus on issues beyond social care, e.g. disability hate crime, employment, access to goods and services
  • Take advantage of developments and their associated funding in other policy areas, e.g. HealthWatch.

DPULOs: Part of the mix

I was recently invited by those lovely people at research in practice for adults to give a webinar on Disabled People’s User-Led Organisations. More information and background on this is available here.

There was an excellent mix of people taking part in the session, including both from DPULOs themselves and including local authority commissioners. It was great to also have the perspective of service users on the day as well.

Below are the slides from the webinar, which  I hope may be useful. For further information on ripfa‘s work on DPULOs and other stuff, do visit their website.

DPULOs: part of the mix – a webinar

At the end of last year, research in practice for adults  kindly asked me to contribute to some work they were doing around user-led organisations.

You can read the work we did on ripfa’s interactive website, particularly:

ripfa has kindly invited me back to run a webinar for people who work or are interested in user-led organisations. The purpose of this webinar is to:

  • Reflect on the main learning from the previous research in practice for adults series of ULO events
  • Provide an overview of the government’s new Strengthening DPULOs Programme
  • Share existing evidence and resources regarding ULOs
  • Discuss the challenges for ULOs and commissioners in the current environment
  • Share ideas for addressing these challenges.

If you’re interested, you can sign up for the webinar here.  It’s next Monday 21 November at 2pm, and I hope to see some of you there.

History of DPULOs and the policy context

Over the last few months, I’ve been lucky enough to contribute to a few publications about Disabled People’s User-Led Organisations. This post is therefore an extract drawn together from a few of these publications – including ripfa’s Key Issues on ULOs – about the history of DPULOs and the policy context, up until the general election in May 2010. The Strengthening DPULOs Programme continues the story from then, building upon the platform below.

Disabled People’s User-Led Organisations (DPULO) are part of a long history of Disabled People’s Organisations and Centres for Independent Living (CIL).CILs themselves began with war veterans returning to the United States in the 1960s and wanting to live independently rather than in institutions. In the UK, similar attempts by disabled people in the 1980s to live independently in the community rather than in residential care led to the creation of the first CIL.

In 2005, a key report – Improving the Life Chances of Disabled People – highlighted the difference to disabled people’s lives that CILs made in the places where they existed. As a result, it made Recommendation 4.3:

By 2010, each locality (i.e. each area with social care responsibilities) should have a user-led organisation modelled on existing Centres for Independent Living (CILs).

The Department of Health took responsibility for the development of DPULO policy nationally and established a variety of characteristics that DPULOs should demonstrate. These corresponded to two distinct areas:

  1. A set of values to which an organisation should adhere, including: working from a social model of disability perspective, promoting independent living, promoting human and legal rights, and engaging with all local disabled people, carers and other people who use support services
  2. A set of characteristics an organisation should demonstrate, including: being legally constituted, having a minimum of 75% of voting members on the management board drawn from the organisation’s constituency, demonstrating sustainability, and working with commissioners.

In addition, there was a set of typical activities and services a DPULO could deliver in order to support independent living, as follows:

  • Information and advice
  • Advocacy and peer support
  • Support in using personal budgets and direct payments
  • Support to recruit and employ personal assistants
  • Assistance with self assessment and support planning
  • (Disability) equality training
  • Support the implementation of the Disability Equality Duty by public sector organisations in the locality.

The three areas above are highly inter-related and lead to two distinct features of DPULOs: they operate on both the demand side (i.e. providing the individual and collective ‘voice’ of and for the direct experiences of disabled people, carers and people who use support services) and the supply side (i.e. providing services).

In practice, the need to establish both demand- and supply-side activities and existing arrangements gives rise to a number of potential operating and delivery models for DPULO­s. These models often build on the long histories of existing organisations and the types of activities they undertake and include:

  • An ‘all under one roof’ approach, where one DPULO ­covers all or the majority of suggested services and constituency groups
  • Umbrella partnerships between existing organisations, with attendant governance arrangements (be they formal, such as a written governing document, or informal, such as a partnership agreement or network)
  • Several DPULOs in one area, each providing a specific service(s).

Local history, circumstances and resources often determine the most appropriate approach from a number of options to take in further building the capacity of DPULOs.

A 2006/07 DH study initially identified 647 potential DPULOs across England. However, a follow-up DPULO baseline study carried out for the DH in 2009 noted there are only 66 established DPULOs and 64 local authorities that have no DPULOs at all. A further DH study is being carried out at the time of writing to determine the current national picture as accurately as possible.

At the end of 2007, Putting People First highlighted the importance of independent support services for people navigating the care and support system, irrespective of their eligibility for public funding. As a result it included the requirement for at least one local DPULO per area, alongside support for mainstream mechanisms to develop networks that ensure people using services and their families have a collective voice, influencing policy and provision. This policy support remains in place through both the government’s Capable Communities, Active Citizens adult social care vision and the joint agreement across a number of social care organisations, Think Local, Act Personal.

However, DPULOs support a wide range of policy areas and not just those relating to adult social care. One key area is in supporting public sector organisations in meeting their obligations under the Disability Equality Duty. Similarly, DPULOs embody an efficient, embedded and representative way of delivering what is colloquially known as the “duty to involve” and are a ready-made vehicle for delivering transformation through coproduction.

Another role is in supporting joined up support across social care and health. Local Involvement Networks (LINks) were created through the “Our Care, Our Health, Our Say” Health White Paper in 2006. They provide flexible ways for communities to engage with health and social care organisations, as well as ensure user involvement is at the heart of provision in holding bodies engaged in both the commissioning and delivery of services to account. At present, only two DPULOs in England are the host organisations for LINks. The most recent Health White Paper (2010) proposes retaining the role and function of LINks under the new name of HealthWatch, thus providing plentiful opportunity for DPULOs to engage and drive the continuing work to join up social care and health.

Finally, DPULOs – as civil society organisations run by and for their members and clients – can contribute to the overarching agenda created by the Big Society. Through enabling peer-to-peer support for disabled and older people in their local communities, and through encouraging their members and clients to use their social capital, DPULOs are extremely well-placed to facilitate citizen contributions to the Big Society agenda.

What work has been done so far to build the capacity of DPULOs?

There has been some previous national activity looking to build the capacity of DPULOs, particularly in order to enable them to support the transformation of adult social care. The DH’s DPULO Development Fund began in March 2008 to build the capacity of 25 DPULOs in total: 12 DPULOs in Wave 1 (March 08–June 09) and 13 DPULOs in Wave 2 (March 09–March 2010). This work was driven by the DPULOs involved themselves and created many learning products. Overall, the DH concluded there were mixed results concerning progress of the DPULOs involved, especially in areas like working with local authorities and sustainability.

Alongside the ULO Development Fund, the DH and ODI also undertook some DPULO capacity building work through the regions, channeling support through the Deputy Regional Directors. In 2009/10 each region was allocated some resource to look to ensure there was a DPULO in each local authority in each region, as well as support coproduction more widely.

As well as work done by central and regional government, the disability sector itself has looked to build the capacity of DPULOs. Disability LIB (“Listen. Include. Build.”) was a partnership of several disability organisations funded from 2008 by the Big Lottery Fund. The partnership provided DPULOs with capacity building information, advice and support to enable them to be more effective in their activities, and finished in June 2011.