Keypoints/Summary

A summary - key points

'..the organisation, driven....by national requirements, requires instant action and clearly identifiable outcomes. This tends to skew their work towards the superficial and short-term, so missing opportunities for the development of more substantial and ongoing forms of public involvement'. ¹

Being involved in decisions about health or social care is a right, not a privilege.

A 'consultation culture' starts within the organisation or work setting. Are staff consulted and involved?

Top level commitment is needed to provide leadership, to express the importance the organisation places on 'user involvement', to maintain momentum and to make things happen. Identified 'champions' at every level within an organisation can act as a network to pass on information and ideas.

Involving people in shaping health and social care services is a long-term, ongoing, developmental process, not a one-off project or exercise. It is a way of working that is integrated into practice.

Be realistic about the time it will take for attitudes to change, for skills, knowledge and trust to develop and infrastructures to be built. The groundwork that you are doing now will bear fruit in the future.

There is often disillusion about involving people. Agencies interpret low levels of participation as lack of interest rather than inappropriate choice of approach.

Users feel that their views are not taken seriously, as they don't see them acted upon. It takes time to overcome cynicism borne of previous poor experiences, establish trust and mutual respect, and for people unused to participating to develop confidence and skills.

Agencies, staff, service users and others with a key interest should work together to develop a clear and easily understood statement of values and a long-term plan. Be clear about why you want to involve users, and what you wish to achieve. Make this transparent to staff and service users.

There is benefit in working across agencies to pool resources and avoid duplication. The public does not understand agency boundaries.

To avoid duplication one partner agency might hold a database of initiatives. This would also help in identifying gaps and deciding on priorities.

(The North Bank Forum hold a Directory of User Consultation Exercises in Hull and the East Riding of Yorkshire - See 'Other resources')

Resources are needed. Allocate a budget. Development and link-workers have been found to be of benefit. Recognise dedicated time for other staff.

Build user involvement into contract specifications and job descriptions, and involve service users in monitoring to ensure that engagement is real and meaningful rather than token.

Be clear about the consequences of involving users. Is the organisation or staff group prepared to make changes? Have people been able to work through their response to criticism? Provide training and opportunities for reflection.

Agencies often consult too lightly, to meet their own needs without intention of change, or recognition of the cost to participants. If you are only interested in 'ticking the box' do as little as possible. Ill-conceived one-off initiatives can damage relationships for others.

If resources are limited it is better to do something on a small scale well than to be over-ambitious.

Do you really need to undertake a particular exercise? Is the information already available? Has someone else, either nationally or locally, done a similar piece of work that will meet your needs? People all over the country make remarkably similar points. Resources are too scarce to duplicate work unnecessarily.

Gather and make effective use of existing information.

Do you need to do this yourself? Other people may be better at engaging with people than you. Provide resources and support to those who have the skills and contacts (user groups, community groups, voluntary organisations, staff, for example).

Effectiveness in involving people comes from approach rather than technique. Successful user involvement derives from a genuine and positive approach that respects and values the expertise users contribute.

There is no one method of involving service users that 'works'. You will need to use a variety of approaches. This allows a wider range of people to be involved and provides richer information and ideas.

Be clear about purpose. The approaches chosen will follow from what you wish to achieve, and the characteristics of the group.

Be open and honest about your intent and about any limitations on what is possible.

Topics and methods are often defined by professionals. People are committed to what is important to them. They are more likely to become engaged when they own the ideas. Service users have their own agenda, and it may not match that of the agency or work setting. Negotiation will be needed to establish common ground.

Involve users from the beginning of the process. The user perspective in defining priorities, setting and monitoring standards, devising surveys, staff training etc. will make the process more appropriate, accessible and effective.

Approach people individually to ask for their help. The most common motivation for getting involved is 'to make a difference for others'. "Personal contact and preparation to take part in consultation exercises were much more effective than letters and leaflets". ²

In order to become involved people need information or awareness, a perception of benefit or relevance, and confidence about their own role. People need a clear explanation about what is involved, what is expected of them and the time commitment required. They need to know that any particular needs they have will be met, and what support will be available to them. Provide the opportunity to try something out before making a commitment.

An 'agreement' with participants can ensure informed involvement, reflect the value placed on their contribution, and promote ongoing engagement.

Users need to be sure that their input can have influence and be translated into practice. Feedback is extremely important to them. People need to see a result that has an immediate link to their participation, as well as to believe that things can be improved for others in the future. Small successes create confidence.

Establish the level of involvement participants want initially, but be prepared for people to want to take on more as their skills and confidence develop.

"Service users need a range of support and training in order to be fully involved in decision-making". ³ Support or link-workers have been found to be of benefit. Similarly, community and user groups need resources and support to develop their skills in working with agencies.

Don't expect service users to be representatives. Their own experience and perception is what is of value, and others are likely to relate to it.

Users and carers will have a different experience of services. Carers should contribute in their own right, not as representatives of those they support.

Good equal opportunities practice (expenses, childcare/ carer substitution, transport, accessible, comfortable venues, production of materials in other than written form, use of advocates, signers etc.) demonstrates to people the value placed on their contribution and allows a wider range of people to participate.

Have a clear policy on payment. Pay people whose expertise you use.

References:

1 Lupton & Taylor 1995 in Farrel & Gilbert, 1996, Health Care Partnerships - debates and strategies for increasing patient involvement in health care and health services, King's Fund.

2 Evaluation of National User Involvement Project 1999

3 Evaluation of National User Involvement Project 1999

Back to the Top