Service planning
The involvement of people with diabetes
What is user involvement for?
User involvement is about building bridges between professionals and users so that local services can be more effective in meeting the needs of people with diabetes. Above all, user involvement is about relationships: bringing people with very different interests together to understand each other better and learn from each other.
Local diabetes services ought to be clearly focussed on meeting the needs of people with diabetes. In practice, however, health and social care organisations have many pressures to cope with and they can easily lose this user focus. Organisational and professional priorities do not always converge with user priorities. User involvement helps to refocus both the planning and the delivery of services on the needs and interests of the people who actually use the services.
Approaches to user involvement
If user involvement is about building bridges, the people on each side of the bridge have to cross the bridge and meet each other. This can be done in different ways:
- The local health organisation can ask users to cross the bridge and join their professional discussions.
- People from within the health organisation can go the other way: reaching out in to communities to talk to local people on their own terms.
- There can be movement both ways, for example through the support of a local voluntary organisation that has good relationships with both the health care providers and the local community.
Each of these approaches has its strengths and weaknesses. In particular, the nearer users get to the centre of health and social care organisations, the more likely they are to play a real role in decision-making – but the harder it becomes to articulate the user perspective amid professionally dominated agendas. The closer professionals get to the heart of community groups, the more likely they are to be genuinely challenged by alternative perspectives on health – but the harder it becomes for them to connect this experience to the politics back at the office or surgery.
Ideally, health and social care organisations should pursue a mix of user involvement strategies, bringing people in to the decision-making process while also reaching out to voices that are otherwise unlikely to be heard. A key part of this strategy should be building relationships with local community and voluntary organisations that have the capacity to work with public organisations and act as a conduit for wider community views. In practice, many organisations still rely on the cheapest option: appointing a ‘lay member’, ie a person with diabetes, on to the relevant group and relying on this one person to make all the connections across the professional-community bridge.
Lay representation and partnership with the local voluntary and community sector provide a framework for regular user input. Within this framework, many other methods can be pursued including standing user reference panels, patient surveys, focus groups, special workshops and listening events, community-based research and outreach to community groups.
The lay member’s role
Although the appointment of lay members should not be the only part of a user involvement strategy, their role is invaluable in informing and challenging local decision-making. Having user voices at the heart of the organisational process will, over time, make professionals think twice about their assumptions and begin to think more consistently about user interests. As lay members build relationships with their professional peers on planning groups, trust increases and the value of everyone’s contribution becomes clearer.
The role of the lay member is often described as being a ‘critical friend’: someone who offers an alternative perspective that can at times be challenging, but who engages positively with professional and organisational interests. This is not an easy role and it is crucial that lay members receive appropriate training and on-going support. Lay members should be given regular support from officers who can ensure that they are happy about their role and confident in fulfilling it.
As well as bringing their own experience to the planning process, lay members can also be advocates for wider community voices. This can be achieved in a variety of ways: through their own contacts and relationships; through regular contact with a bigger users’ reference group; through links with voluntary and community organisations; or through active participation in wider user involvement activities such as surveys, consultation days and outreach.
The challenge for the lay member is to find ways of influencing the professional agenda to bring about real change. Lay members need to grasp where the opportunities for change lie within the many documents and strategies that will come their way and target their comments and input on these opportunities. This is a skill that takes time and experience to develop.
Levels of involvement
In practice, user involvement has many different levels of ambition. This depends on the commitment and skills of the people involved (especially the professionals). These levels can be described as:
Information giving
This just involves users being told about developments and decisions.
Consultation
At this level, users are invited to make comments on documents and plans but they have no role in the actual decision-making.
Partnership
This requires that professionals and users build good working relationships and share the responsibilities of decision-making.
Empowerment
At this level, users have the final say over decisions.
In practice, most health and social care organisations pursue information and consultation models, although the increasing involvement of lay members and voluntary and community sector representatives on planning groups has enabled more partnership-working. Partnership ought to be the minimum goal of local diabetes planning groups. If people with diabetes are not involved at the heart of the decision-making process, their views will always risk being disregarded by busy professionals.
Things to consider
If you are thinking of getting involved in a local diabetes planning group, here are some questions to ask yourself and the local health and social care organisations:
- What will participation in the group involve?
Remember that as well as reading the documents and attending meetings, you may also get involved in other related processes such as working with reference groups or user networks, liaison with the voluntary and community sector or participation in other corporate user involvement work.
- What training and support will I get?
Ideally, support should be available both from officers in the organisation and from wider networks, for example local voluntary sector networks or lay member networks.
- How exactly will I contribute to change?
Find out whether the group you are thinking of joining makes decisions itself or makes recommendations for other people to decide on. Will you be happy with the level of influence you get in practice? Also, how involved will you be in the development of new plans and projects?
- What training and guidance in user involvement have professionals and officers received?
What experience do they have of building relationships with users?
How many other user representatives will there be on the group? There should be at least two people on any group in order that the user voice is not marginalised.