Key questions for inclusive involvement

31 October 2023

In our twenty plus years of working in the field of service user involvement, people tell us again and again that they want to share their lived experience, but that involvement activities must be inclusive and meaningful.

They want to contribute to something that has the potential to make positive change, and want to know what changes have been made after their involvement. They want their access and support needs taken seriously, to enable them to get involved.

So before you start planning user involvement, we recommend taking a look at these key questions. These will help you think through the vital issues to make sure your involvement activities are inclusive, meaningful, and effective.

These are taken from the Usual Suspects electronic guide 1: Some key questions for inclusive involvement. Read the guide for more detailed information about each of these key questions.

At the end of this blog you’ll find a handy infographic to download as a reminder of these key questions for when you’re planning user involvement activities. There is also a text only version to download too.

What is the purpose of this involvement?

Why are you doing it? Make sure you have a clear purpose defined before you start planning user involvement activities.

What change can happen as a result of this involvement?

For involvement to be meaningful, it has to lead to something. Make sure there is a chance of positive change.

Have you the resources to carry it out in line with good practice?

Check the good practice guides for service user involvement, and see if you have the resources to meet the standards they suggest. Remember, it’s better to have a smaller scale activity done well, than a larger one done badly. (If you’re looking for free guides and resources, check our resources section).

Have you allowed enough time?

Time is a key access issue. Plan for enough time for advertising and recruiting people, finding out access and support needs, and by passing any barriers or gate keepers to involvement.

Time is also crucial for your participants to be able to book the right travel and accommodation, arrange child care or additional support.

Are you paying service users?

Many service users and their organisations now expect to be paid for sharing their expert ‘knowledge by experience’. It is recognised good practice to offer payment. However this is not always straightforward, particularly if service users are receiving state welfare benefits.

Reasonable expenses and support costs should be funded and these are not considered as income by HMRC so can be accepted by anyone. They should be refunded as a separate payment to involvement payments and referenced as expenses.

Check the guidance by Social Care Institute for Excellence and National Institute for Health and Care Research
Check with local user led organisations

Who do you want to involve and why?

If you want to reach a specific group of service users, first ask yourself why? Are you sure you are not making assumptions about them or other groups. Also ask:

Has anyone carried out similar work and can you learn from that?
Does your organisation have existing links with this chosen group?

How will you keep a record of what people say?

Any involvement activity which does not have an accurate record is unlikely to count for much. What is needed is the best possible compromise between accuracy, accessibility and a non-intrusive method of recording. Questions to ask are:

Do we need a verbatim/full account of the meeting?
Do we want to be able to access direct comments from participants?
How will we be ensuring that participants can give their informed consent and how will we deal with a situation where some people may not want to be recorded?
How can we ensure that all comments are recorded, given that participants may communicate in different ways?

How will you deal with sensitive issues which may upset people?

Even when user involvement is focused on official and business matters, personal issues often come to the forefront. Service users frequently want to talk about their own personal and private experiences.

How will you ensure confidentiality and anonymity?
How will you keep a record of what people say and will they be safe?
How will you support people?

How will you feedback to participants?

This is absolutely crucial. The major reason why service users became disillusioned with involvement initiatives was because nothing seemed to happen as a result.

What plans are there for feeding back to participants?
How will you ensure that feedback is accessible and can reach as many people who got involved as possible?

What are you doing to overcome particular barriers to involvement some people may face?

Discuss possible barriers and ways of overcoming them with any people from groups that face such exclusions.

Work out and set down what you plan to do to overcome such problems
If at all possible discuss them with user led organisations with experience in involving such groups
Check Shaping Our Lives resources – such as Tickboxes and Tokenism – for guidance

What action do you plan to take with what you find out?

The whole point of user involvement for most service users is bringing about positive change.

What specific changes are possible as a result of planned user involvement?
How realistic are these plans?
If they are not achievable on this occasion, will there be further opportunities to try and do something about them?

As a handy reminder of these key questions, download this infographic

Or download this text only version

To find out more about these key questions, read the guide: Some key questions for inclusive involvement (PDF)

Other useful resources:

If you’re looking at planning participation and involvement activities, and want to know how we can help you, please don’t hesitate to get in touch: hello@shapingourlives.org.uk

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Key questions for inclusive involvement

Other useful resources: