Involving service users in shaping local services.
This study by Age Concern London brought commissioners and service users together to discuss how service users can be involved in shaping local services.
The project reflected on what's happening at the moment and how user involvement in commissioning could work in practice. It found that:
The research Samantha Mauger and Gordon Deuchars from Age Concern London, with independent consultants Stephanie Sexton and Silvia Schehrer
A lot of social care public money is spent locally through commissioning. Officers buying in blocks of services where they can use their purchasing power to get the services they want, at a quality they want and at cheaper cost.
For years Governments have developed policies on choice and control for individual service users (e.g. Labour’s Personalisation Agenda; Conservative’s 1996 Direct Payments Act) built on ideas from disabled people before that. Policy language focuses on ‘World Class Commissioning’, but in fact this evidence shows that we are still a long way from ideas of choice and control and credible user involvement in the ways that services are commissioned.
This project was part of the Joseph Rowntree Foundation’s Independent Living programme. JRF had funded hundreds of projects over almost 30 years on the lives of different groups of service users. Although there were examples of good practice in achieving what people want, the system as a whole seemed slow to change in practice. The Independent Living programme focused on three important aspects of the Social Care system to see if a wider shift was possible. Those aspects were: people in residential care; bursting barriers to person-centred support in a range of services; and involving users in the ways that those services were commissioned in the first place. Age Concern London and London School of Economics separately succeeded in bids to undertake the work about user involvement in commissioning. These are the Findings from the Age Concern London project.
The project, based in London, worked across six London local authorities and seven different user groups (ranging from mental health users to people living with HIV). The project team drew on the literature of user involvement and of commissioning in health and social care. User groups and commissioners in each of the local areas were asked about their experiences of working together in specific service areas, the extent to which their experiences were positive or negative, the limitations external factors had on aspirations (on all sides), what each group needed from the other and their own assessment of how involvement had (or had not) worked.
For service users there seemed to be three different service approaches to user involvement. Services could be
Users noted that, in practice, their local authority could adopt all three positions at the same time. This could make it incredibly complicated for users and for allies. In addition, the middle position (ostensibly open but not actually willing) can be particularly confusing. Different user groups had different experiences of being involved in commissioning. Some had been involved with commissioners who had responded to what users wanted to a certain extent. Others reported that little or nothing had taken place. In one area, a group of people with learning difficulties had a stronger role – in another local area such a group did not exist or have a role.
Service users said that there is a desire to get things done and to put something back. When it works there is mutual sense of feedback between the commissioner, service provider and user. But users also said that there is a need for some sort of action as a result of their contribution, and that feedback on what had changed as a result of their involvement was important.
For service users, all were keen and ready to be involved. There were lots of things that could get in the way: when commissioners refused to answer straightforward questions; the non participating silent majority in their own forums; involvement being a ‘tick-box’ exercise; a lack of clarity about the purpose of an event; officers working to a service-centred model rather than a user-defined agenda; jargon; anxiety about getting swamped; where the truth is not told and the lie is obvious; and where officers or users are focused on their own individual agendas rather than the common good.
We are grown ups and need to be informed about the realities rather than pretending this is really about choice and development. We can make sensible and useful contributions but it is important not to patronise us by pretence.” (Service user)
Payment mattered to some: "It's an important principle (not necessarily about the amount) that our expertise is paid for." One indicator of involvement being taken seriously was when funding was available for users to be paid for their time and contribution.
Support workers, trusted by users, could ensure that the link between staff and users in the group was managed well. However, support workers could also get in the way. In some boroughs, workers did not always work with users’ best interests in mind or (if employed by a voluntary organisation) there were conflicts of interest with a provider role.
Four of the six commissioner groups work in a local authority setting (one of these was moving towards joint commissioning teams). Two had a joint commissioning brief across their Primary Care Trust and Local Authority. The majority of commissioners interviewed were still trying to get to grips with their current role. Commissioners talked about the issues quite openly.
Commissioners reported that user involvement in commissioning was seen as useful in a number of different ways while also posing tensions and challenges.
A commissioner in one borough felt that user involvement had been very helpful in raising the particular profile of a particular service area locally and that this had led to councillors allocating more funding to that service.
User involvement was useful when councillors were willing to take time to attend meetings and valued what users were saying. Sometimes, however, it was merely seen as ‘a good thing’. Sometimes it was active manipulation; a way of legitimising unpopular decisions. There was no shared vision on what good user involvement in commissioning should look like. Many commissioners acknowledged that there was a lack of capacity, knowledge and skills around user involvement in their own and in partner organisations. It was also difficult to get the balance right in shaping services for present or future generations.
Generally commissioners were positive about the commitment of Local Authorities and Primary Care Trusts to user involvement but they thought health structures lagged behind local authorities.
One user group had been involved in tendering for the home care service and in a consultation exercise for GP services. Because the latter had no agreed framework and the purpose of involvement was unclear the users withdrew, as they had no confidence they could achieve anything.
All bar one local authority relied heavily on voluntary organisations to facilitate user involvement in general (and in commissioning in particular). Commissioners did not acknowledge the potential tension between voluntary sector organisations as facilitators and as services providers. It was very unusual to see user-led organisations (rather than a conventional voluntary organisation) in the role of facilitator or lead advocate.
Commissioners did not simply want to work with the usual individuals (and some groups were also hard to reach). However it was also important to work with people who had already become skilled and experienced. Commissioners were also aware that they could ‘cherry pick’ either the people who were involved or be selective about which comments fitted in with their own agenda.
Commissioners appeared to struggle with sharing power and it was unclear how much power (if any) was really being transferred to users. Service users were also unsure about governance issues and what was expected of them. Sometimes technical issues in commissioning got in the way of transferring power; but sometimes it was a culture of decisions actually being made behind closed doors.
Although the perception on all sides was that practice remained quite poor, users and commissioners could also see the potential and some evidence on how user involvement in commissioning can (or could) make a difference.
There were also shared and different perspectives between users and commissioners about what would make involvement in commissioning work better in practice.
Involvement needs to be resourced, people need to be willing to explore, make mistakes, discuss, make human contact, and be honest. Users need to be involved from the start, in sufficient numbers and throughout the process.
Users especially wanted honesty about user involvement and about commissioning, feedback about what has and has not changed as a result (to learn from mistakes rather than hiding them). It needs to be a negotiated, open, fair and honest process.
There is a need to spell out the different steps (from buying services now to planning for services in ten years time) and to involve service users in a way that can make a difference.
Frontline staff and providers, care workers and those in direct contact with services users are likely to have a better understanding than commissioners about what people want and the texture of their lives. Their knowledge needs to be valued.
If strategic commissioning is itself truly strategic, there needs to be ownership of user involvement by all (including and especially by public services).
The ways services are commissioned pose challenges and opportunities for commissioners as well as users. It is tempting simply to commission existing services. But the evidence from this project suggests that commissioners need to be visionary and experimental and to involve service users in this. The bad news is that we are starting from quite a low base in terms of credible user involvement. The good news is that developments favour people who are willing to take risks in trying out new approaches. It is difficult to argue against involving service users in shaping the services they use. The practical lessons (from ideas such as Direct Payments) show that it can pay dividends. The difficult part is moving beyond talking about why it’s not happening, to helping to make it happen.
The study, based in Age Concern London and employing two additional consultants, worked with service users in seven local organisations and commissioners in six inner or outer London local authority areas. The research team included a service user, a former commissioner and three others with policy or practice backgrounds. The team worked with a wide range of users, commissioners and associated organisations. The project involved a literature review and small group discussions about the current state of user involvement in commissioning. The researchers also acknowledged that the perspectives they were researching were also evident within their own team and discussed the implications of this in their approach and conclusions.