Part 2a - Ways of involving people

Ways of involving people in shaping health
and social care services

Ways of involving people - from passive recipient to active participants

"Talk is cheap when it comes to participatory services. Finding a way of making it a reality is a hard, unglamorous slog". ¹

Introduction

Involving people includes involving them in their own assessment processes and care and treatment decisions. Approaches to working with individuals are part of professional practice, and are not covered here. What follows are ways in which people can be involved in wider processes.

'How' to involve people is not the first question to ask. The first section of this guide deals with some of the considerations you need to address before you get to this point.

"Often, the success of your consultation will depend on your values-how committed you really are to listening to what your users tell you, not to what you want them to say." ²

Effectiveness in involving people comes from an approach rather than a method.

The words 'ways' or 'approaches' have deliberately been used instead of 'methods' or 'techniques'

Techniques can be	detached from context learned mechanically applied impersonally
Approaches are	grounded in the context value based broad and flexible³

There are many reference sources of information about methods of involving people; how to carry out a survey, for example. A number of these (national and local publications, web sites) are given in the resource section. It is not the intention to repeat readily available information here. What follows are brief outlines of where it might be appropriate to use a particular way of involving people, and how effectiveness can be maximised. These are drawn from reports of practice and 'live' experience, and from evaluations, where these have occurred.

".. why are we trying to turn research tools and techniques into products - The Citizens' Panel, The Citizens' Jury- instead of seeing them as principles to be flexibly applied. We are in danger of closing down our options instead of opening up more possibilities for innovative approaches."4

It can be hard to get people involved but the ways of involving them are not necessarily difficult. There are basic methods of engaging with people, and the challenge is to use them in flexible and innovative ways. Often, very similar ways of involving people are known by different names, which can make things seem more complex, and exclusive to 'experts', than they really are.

It can be useful on occasions to bring in an 'expert' with an independent perspective, or to learn from someone with experience, but this can perpetuate the idea that involving people is something that happens as a project or one-off exercise. User involvement is everybody's business, and should be integrated into normal working practice.

Agencies as corporate bodies may have difficulty in engaging with people, but staff already have many of the skills, and can acquire others, such as working with groups. Local multi-agency networks can share and develop skills, share costs and avoid duplication.

Key principles to follow:

Be clear about what you want to achieve. The appropriate approaches will follow from your purpose

Involving people isn't a one-off project or exercise. It should be rooted in the culture of the organisation and part of everyday working practice.

Use a variety of approaches. Only by using a combination of ways of involving people will a broad enough range of people be able to contribute in enough depth to shape appropriate, accessible, effective services.

A variety of opportunities to contribute allow people to get involved at the level that suits them

Who are you engaging with?

Some characteristics of the population

You need to know the characteristics of the people you want to engage with to choose approaches that are fit for purpose. It is therefore important to know who the 'service user' might be. In the general population:

104 per 1000 of the adult population living in the community are estimated to have a physical disability. 59.5 per thousand of these will have a concurrent sensory or mental impairment⁵
1 in 7 people will have some degree of hearing impairment, rising to nearly half of all those aged between 61 and 80 years. 1 person in 1000 uses British Sign Language as their first language, and one in 16 has a hearing aid
1 person in sixty is blind or partially sighted
1 in 20 of the over 65s will have a dementia, rising to 1 in 5 of those over 80.
1 in 6 of the population will have a mental health problem, and for 1 in 100 the problem will be severe
1 in 50 people of all ages will have some degree of learning disability, of which 4 in 1000 will be severe
At least 1 in 6 adults will be functionally illiterate⁶
There are 3.6 million people of minority ethnic origin in Great Britain, r 6.4% of the total population. (1997 population estimate)
14 million people live in rural areas or outside identifiable towns and villages
There are estimated to be 50,000 travellers and 5,000 'new age' travellers in Britain⁷
The number of homeless people is difficult to estimate
One key group of people who felt excluded from their local community were people over 70, especially men, in a lower social class, on low incomes, who are council or housing association tenants and who live alone⁸

The cohort of people who use health and social care services will contain more people with characteristics such as those outlined above than the general population. Some will have multiple impairments; for example, people with a learning difficulty may also have a sensory impairment; the majority of people with physical impairments are over 65.

It can be seen that a variety of approaches will be needed to involve all the people you would wish to include.
It is also clear that one of the most commonly used methods of consultation, the survey, written in standard size print in the English language, and requiring a written response, will exclude a large number of people.

Literacy levels

The ONS International Adult Literacy Survey 1998 found that 20% of the population of Britain, or eight million people, had reading and writing skills that fell below those needed in everyday life.

Basic Skills Agency studies⁹ found that 16% of people aged 16 to 60 whose first language was English, were functionally illiterate (defined as unable to read, write, and speak at a level necessary to function at work and in society in general). People with poor basic skills were less likely to participate in public activities. This suggests that those with literacy difficulties are less likely to be included in any form of consultation.

This suggests that exercises that are in written form, require a written response, or verbal articulacy, may exclude up to one in five of the population.

Why it can be hard to get people involved

It is important to recognise that people not only have a right to be involved, but a right not to be, - or at least to choose for themselves when and how to be involved. You might feel that your time is not well spent taking part in consultation on the colour scheme for your doctor's surgery. But if s/he is going to change surgery times or the appointments system that may have more of an impact on you, and then you would value taking part in discussions.

There are many reasons why people don't get involved, including:

People don't see any relevance to themselves in what you are doing or asking
There are costs to involvement-time, emotional cost, other activities foregone
Traditional ways of involving people have not always been the most appropriate
We are used to electing representatives rather than participating ourselves
Many people do not feel confident about their abilities to understand what is happening or express themselves.
People may have had unsatisfactory experiences of 'authority', or with people they see as having power over them
There is a tendency to confuse criticism, which means judging the qualities of something, with complaint, which has entirely negative connotations.
People are afraid that they may jeopardise the service they depend on, or their relationship with staff
People have their own interests and expectations which may be different to ours

King's Fund research identifies barriers to involvement as:

structural systems that are not open and democratic

adverse professional attitudes

lack of resources

How to engage with people

Of overwhelming importance is genuinely wanting to. This comes from a sense of respect for people and a willingness to regard their perspectives as valid and of equal worth. The culture of the organisation needs to be one of openness and willingness to change. For staff to feel secure about involving people in planning and decision making, they need opportunities to work through their concerns.
Everyone has an opinion - ask them! People may not volunteer, but they are usually pleased to be asked directly. There are plenty of opportunities for doing this - staff are in contact with large numbers of people, and individual invitations can be issued through community, voluntary and user groups.
Include people from the beginning, in setting the agenda and agreeing priorities.
Groups such as those detained under the Mental Health Act and people who abuse substances may not want to have contact with statutory agencies, but there will be others who are engaged with them. Once some trust is established, people will recruit others through their own networks. You seldom need a statistically representative sample, just a fairly typical one.
The best motivation for people to participate is the feeling that they can improve things for others.
Start small - success breeds enthusiasm and confidence.
Go out onto people's own territory, (local venues, existing groups etc) - don't expect them to come to you.
Be absolutely clear about what is expected of people, and what they can expect from you.
It is a common misapprehension that if asked what they want people will ask for the impossible. They don't. Explain any genuine restrictions - people can understand.
Don't put people off with formality and jargon. Informal doesn't mean amateur.
Activities where there is opportunity for interaction are more enjoyable than formal ones. Make it fun!
Communicate. Give feedback. People need to see the result of their efforts, and to see that they have made a difference.
Don't expect anything to happen quickly. Gaining trust and developing good working relationships takes a long time. Community development approaches will be needed to allow people to develop the skills to represent themselves.
User involvement needs resources - money, link people and staff time. Don't underestimate the resources require

Involving staff within organisations

What is often overlooked is that developing a 'culture of involvement' begins in the workplace. Staff empowerment, and job satisfaction, are increased by involving staff in decision making within organisations.¹⁰

The Report of the NHS Taskforce on Staff Involvement ¹¹ found evidence that those services that involved staff in day-to-day decisions, planning and policy making

Improved care through better service delivery
Managed change more effectively
Had a healthier, better motivated workforce and reduced staff turnover

Involvement begins with the quality of the relationship between service users and staff.
University of Birmingham research found that "In those centres where staff did not feel valued by 'management' and were not routinely consulted about policy issues, there was less evidence of empowering user strategies."¹²

There is much evidence that the support of staff promotes user involvement. However, an evaluation in South Derbyshire showed that staff working with disabled people wanted to involve them, but felt concern about raising expectations when they did not have the autonomy to make changes and could not guarantee that resources would be available. Although user involvement was expressed as a principle at policy level, structures and resources worked against it, and staff and users became cynical when they felt powerless to make any change.¹³

Cambridgeshire County Council has set up a Staff Panel in parallel to its Citizens' Panel to discuss issues of concern to staff.

Costs of involving people

Few agencies are able to cost precisely all the resources that go into their strategies to involve service users, staff and the public. Involving people isn't cheap, but some methods are more expensive than others, and the most expensive ways are not necessarily the best.

Money can be wasted by not being clear about intent, or not choosing the most appropriate approaches for the purpose. Value for money can be increased by sharing skills, resources and costs across local agencies.

The Audit Commission¹⁴ point out that involving people can improve value for money, or save money, by

Not providing services that people don't want or need
Maximising take-up of services, especially those for which there is a charge
Providing services that minimise complaints and avoid expensive correction of mistakes

There are costs to the agency in terms of criticism and loss of trust if their involvement practice is poor, or they are not seen to take action as a result of asking people what they think or want.
There are costs in that staff time devoted to involving service users cannot be used for other work. Staff may feel pressured if user involvement is seen as an additional task rather than recognised as part of their role.

Don't forget that there are costs to partner agencies too. Voluntary and service user groups may have little or no paid worker time. Increasingly, voluntary groups are refusing to devote precious resources to tokenistic involvement.
Individuals too are giving their time and perhaps limited energy, and sometimes there are emotional costs to participation.
Involving people is not something to be undertaken lightly.

Effectiveness

It takes time, money and other resources to involve people in shaping the services they use, so it would be a shame to get nothing out of it beyond the ability to tick the box that says you've met your obligation to involve service users.

There has been little research to date on how services are influenced by users' involvement.
What would effectiveness in user involvement look like?

What you would be measuring is change:

Within participants themselves (service users becoming more confident, practitioners feeling less fearful)
Within the nature of the relationships between the participants (is there a more equal distribution of power? Are you 'climbing the ladder'? (See 'Models that describe levels of involvement' )
In attitudes and working practices
In efficiency (the best result that can be obtained from the resources used) for example, by providing the services that make a difference to people's lives
In effectiveness (services that do what they were intended to) measured in terms of service users' quality of life

Feedback

Says thank you - shows courtesy and reciprocity
Fosters trust necessary for an ongoing relationship
Summarises findings
Demonstrates that you have not only listened but heard
Outlines action to be taken
Explains the time-scale for action
Explains why any suggestions are not being implemented

Giving feedback to those who have contributed their views, opinions and expertise is crucial if you want to be seen to take 'user involvement' seriously, and retain goodwill. It is a way of making 'payment' for the costs of participating. People feel exploited if their contribution is not acknowledged. It is often possible to incorporate feedback into existing media, such as newsletters or a regular local newspaper column or radio slot. Consider an immediate 'thank you' and periodic progress reports to retain interest.

Feedback should be given as soon after the event as possible. If there will be a delay, for example, because information will take some months to collect and analyse, this should be explained at the outset, with a date when it is anticipated that the information will become available.

If you don't deliver on this you won't get a second chance

North Derbyshire Health produced short annual reports for the public on its Local Voices initiative. These reviewed the ways in which local people had been involved, how their views had influenced services, priorities for the next year, and ways in which local people could influence health services.

Choosing methods - an overview

A framework for choosing appropriate approaches that includes four major considerations:

What you want to involve people in doing
What you want to achieve
The approaches that are most appropriate for the people you want to involve
How much time, money and support you have got

Budget, resources and organisational capacity may influence scale and scope of activity, but limited budgets can promote carefully thought out and creative processes!

A framework for choice of method

1. Purpose	Most appropriate method options

Identifying need	Interviews and surveys, community development approaches, discussion groups
Agreeing priorities	Surveys, discussion groups, ongoing relationships with partner groups and organisations
Developing policy	Information giving, deliberative methods, task groups, ongoing relationships with partner groups and organisations
Performance assessment	Surveys, information feedback systems including complainrs, discussion groups

2. Goal	Most appropriate method options

Identifying values	All interactive methods
Reaching consensus	Deliberative methods, decision-making discussions
Ownership	Community development, polls and voting discussions, ongoing relationships with partner groups and organisations, methods that raise public profile

3. Match with participants	Most appropriate method options

People who receive services	Planning meetings, discussions, surveys, ongoing relationships with partner user groups
People without prior knowledge of services	Methods involving information giving and explanation, deliberative methods
Level of involvement desired	Match method with intended contribution, short-term or ongoing
People with clear personal or practical goals	Methods where process and outcomes clearly defined, and clear result can be demonstrated
People participating in the public interest	Participative, developmental or community based activities with long-term commitment

Adapted from: Seargent J and Steele J 1998 Consulting the Public Guidelines and Good Practice Policy Studies Institute