Service user involvement

Photos: Pixabay and (insert) Kaboompix, on Pexels

This area of the site was written for very experienced trust fundraisers.

Introduction

This is something that has become more of a good practice issue over time. There is no guarantee the issue will continue to grow, though I can see why it might.

My view of the issue is skewed by doing dozens of applications to Reaching Communities and similar grants schemes, which has a high bar and some specific focuses. You’ll have to read this page in that context.

What areas service user involvement can cover

• Suggesting the project
• Voicing BOTH the specific needs AND demand for the intervention being developed
• Helping to develop the model
• Managing the service intervention
• The delivery model is as based on peer-led approaches as it can be
• Representation of service users within the organisation: staff, trustees, having formal bodies that are used

The connection between service user involvement and the actual project

The following video is a bit cynical, but brings out how unserious service user involvement CAN be. It’s one of my all time favourite videos, by one of my favourite academics working on service user involvement. (It includes some good practice tips on service user involvement, in a fun way):

https://www.youtube.com/watch?v=flD8jrfL3K8

Service user involvement can turn into a rubber stamping exercise. One of the challenges I’ve faced trying to get service user involvement done is that successive “lip service” service user involvement exercises have undermined understanding of and belief in service user involvement. So, it’s involved a lot of communication and active involvement for me. That takes time. Service user involvement can be seen as a threat – the Service staff know what they want to do, they know that service users should have their say, so they worry that it will threaten their plans. 

At the same time, Services staff usually appreciate that there are things they don’t know that they could learn from the service users. I’d personally say that effective service user involvement happens at the place of the possible:

With the best service user involvement there’s a strong sense of staff and service users co-creating the work, bringing their complementary expertise and experience to bear. However, it takes some arranging. Here’s what seems to work:

There might be some point in asking one or two very open questions, as if there was a blank sheet of paper. It’s good practice, in a sense. However, I don’t make that a big part of the work, because it probably won’t produce changes for the proposal.

1. Clarify issues to explore with the service users

You’re not likely to come in right at the outset, when the initial idea is being suggested, but when there’s already a sense of the work. At that stage, I’d speak to the front line staff (not their managers) about what they don’t know but service users will know. Services staff can be a bit nonplussed, especially when they have a professional qualification in the work, and need help getting up to speed. So I throw out ideas like: What times and places for the work would work well? What do they need to hear to engage in the service?  How much will they claim by way of expenses? Out of three options, which would service users most want? What do you really not know about the project? 

1. Identify the best techniques to use to explore the issues

The following is a quick SWOT analysis of the main techniques:

Focus groups are great for: 

• Having in-depth discussions. They throw up more ideas and you can build things. 
• As long as you can keep the staff quiet until they’re asked to speak, they can provide the opportunity for staff to provide information to keep the conversation building – and you can get ideas thrown back and forth. 
• Well run, they can be empowering and fun. I’ve seen badly run involvement groups, that really made little difference to the charity, completely come alive when they realize that they’re really shaping something (even if there’s no guarantee it will actually happen).
• If the charity already has a trained service user involvement structure, you’ll get lots of relevant feedback for relatively little work
• They’re the best way to do something visual, like the floorplan of a building. 
• They’re good for seeing enthusiastic consensus.
• With highly stigmatised populations, you can get a great conversation on the issue by having someone facilitate who’s a well-trained peer and comfortable about discussing the issues.

However:

• They don’t give you great numbers (X% of people thought Y) which funders can be a bit hung up on.
• The charity might have a relatively small active service user involvement group
• If everyone’s new, it can be a lot of work to get people up to speed and on track. 
• There’s some danger of groupthink

If there’s (miracle of miracles) a lot of time, focus groups are a good starting point, with more specific work to follow, and/or they can explore specific issues. 

There are lots of great variations you can do on straight “questions to the group”, with focus groups, which I’ll go into if it’s useful.

• If you have a ton of people, including a few staff whom you trust not to try and direct the conversation, you can do a variation on focus groups called World Cafe. It gives you a great deal of detailed feedback (though it’s hard work for the service users).
• You can get people’s ideas on post-it notes, group them in different ways on the wall
• You can get people to vote on ideas by adding stickers

In person / phone interviews:

• Give better numbers (“X% of people thought Y”)
• They’re good for “semi structured interviews” as well as the odd question that gives you an easy stat.  “Semi structured questions” are where you ask open questions and even ask follow up questions for clarification, or further depth. For example, “An idea I’d heard about that point [maybe from another interview] is X. What do you think?”
• Are easier for introverted and unself-confident trust fundraisers to get going on
• They’re easier for service users who aren’t experienced, or who are more vulnerable and unself-confident. They get you past a group of, perhaps not entirely representative, service users on the Involvement Group – people a friend of mine who works in mental health activism memorably calls “super users”
• Are easier to organize, sometimes, than focus groups
• You can take half the feedback back to the staff and ask them to refine the questions
• You can still get into proper conversations about things, though they aren’t necessarily as rich
• Semi structured interviews are a great way for the fundraiser to educate themselves. You get an excellent bid at the end!

However:

• They’re a lot of work. I’ve spent a week getting about 15 questionnaires done, including getting interviews set up, checking back and (especially) writing up all my scribbled notes. I recommend doing an email questionnaire as well, to “bulk the numbers out”.
• You’ll struggle asking about very stigmatising issues.

Email/online questionnaires

• You can send them out to a lot of people, which:
  • Gives you potentially a bigger, more representative sample (if the mailing works)
  • Might sound impressive
• They’re easy. 

However:

• You don’t get much chance to get people “up to speed”, so you can’t ask people sophisticated questions unless they’re relatively au fait, already. (There’s no guarantee of this – I remember doing one survey early on, where quite a few answers were irrelevant.)
• It’s best to do a test mailing. Otherwise, you can find you’ve asked the wrong questions
• They aren’t very interactive
• There’s a danger they can sound like you really couldn’t be bothered to do much work

Prototyping and getting feedback

There’s a service design methodology called Service Design. Building concepts and minimum prototypes, getting feedback and then iterating is a core element (and perhaps the most important contribution) of that approach:

The next steps on are: design the service (and you can refer back to Step 3 at this stage and then move back on); and finally, delivery and monitoring and evaluation.

Clearly, this is a bit of a counsel of perfection, when it’s hard enough to get any service user evaluation done sometimes, never mind repeated evaluation or evaluation that doesn’t sit so well with existing processes. However, the strengths of very concrete, practical service user involvement should be clear and you’ll recognise that some services are very risky, or low on evidence for the funder, so there might be a case for doing (or getting done) more work. It’s used in industry for product design, especially and it’s powerful, though as it’s about the user experience of the service at the bid stage it might look more like detail.

As it’s strong on the user experience of the service, it’s worth considering doing this for a service targeting hard to reach groups. Indeed, it might be worth getting the book This is Service Design Thinking by Schneider and Stickdom.

If your funder wants to fund service user-led work and you don’t think they’d balk at the fact they’re funding you to do more development, some service user-led design might be good to build into the actual funded work. You could pitch it that the basic service model and outcomes won’t be affected, but it will ensure the best experience when you get to the details.

Mapping with service users

This can involve: seeing how they go through a website; getting their journey from them from problem to solution; or go through steps of a task (focusing on the underlying reason why they would complete each task, maximising your chance of seeing how to improve their options). 

It’s only part of the story (if it can be a good part) though and it doesn’t give you data you can use with funders. However, it gives a lot of practical focus and can identify possible improvements that would otherwise have been missed. If you’ve got a group of service users in for a day, it can provide interesting variety for them as well as useful understanding.

1. Get the staff to advise you on delivery of the s.u.i.

Some groups require specialist work. For example: 

• People with quite severe learning difficulties require more simple, concrete questions and their key workers present to unpack the answers.
• Very disaffected young people can require quite short sessions. 
• Very stigmatized groups might need someone from the stigmatized group to lead the enquiry.
• Service user involvement with younger children needs to be very concrete and visual resources are helpful.

1. Feed the findings back to the Services team

If people will read all the raw data, that’s better – but there’s a real difference in how much different people will. You probably want to do some digesting, anyway – whether for the future or for senior management.

When you explain things back to the team, don’t just give the bare facts (“70% of young people wanted the service to happen after 5pm”) but try and get behind that, into the reasoning (“Three people justified that by saying that they wanted to have got home from school and maybe unwound a bit before they logged onto the group”. Another two said they had to take their sibling home.”)

It’s not ideal to disappear off into the sunset at this point, thinking, “My work here is done.” You may not have communicated what you thought you did and you may have missed key insights. So, if you can check back in as the project develops, all good.

1. Ensure feedback to the service users

Reading my draft webpage, Robyn McAlluister my editor highlighted that I’d forgotten to mention feedback to the participants how their feedback was helpful, what it resulted in, etc. This is a classic service user involvement error and one of the reasons that service users drift away from involvement! It’s also discourteous. So don’t behave like me!

The real world case for service user involvement

Sometimes, the hardest thing about service user involvement is getting it high enough up people’s priorities that it happens properly, rather than everyone trying to fob you off with the results of some half-relevant exercise. The following is about making the case for better (or, any) service user involvement:

• • Only service users will know what works. However excellent your staff, they may not know if women with children will take the bus across town to the service, or come at all if there’s no creche
  • Your services will be more powerful, because it’s co-developed by experts by experience. It’s not about undermining staff expertise, it’s about ensuring their expertise has the intended effect by adding in other expertise to ensure that Services’ understandings are applied in precisely the right way.
  • Puts power in the hands of the people who should have it: Not all staff will feel strongly about this, but – isn’t the work all about empowering our service users? If so, shouldn’t they be leading?
  • Basic point of the service – to address people’s needs/concerns – as the service user is the whole point of the service, they should be involved in the design?

• If you get it right, everyone will love the consultation sessions including the staff

• When it’s in place, everyone involved in the project will love it. We all inwardly know it’s the right thing to do, so let’s do it!

However, that’s not to say there definitely will be buy-in. Here are a few ideas if there are issues:

• The funder says we need it, we’ll get rejected if we try and cobble something together from only half appropriate materials (my opening line in many discussions as a lottery fundraising consultant!)
• Use the problem-solving materials on this site to understand the issues and levers – in particular, “Why diagrams” are a good way to unpick things
• The chances are you’re trying to do service user involvement on a big bid. If so, because it’s much more money than normal, normal rules don’t apply! (This one, coupled with “the funder needs it,” has proved very effective against resistance.)
• Services can focus mainly on what they don’t know, so it’s almost 100% directly useful for the future
• It’s good practice, what we all inwardly want and will maximise project success
• We can draft the questionnaires for you (but with your help to identify the best questions)
• Is there a more efficient way to get the involvement?
• You can adjust the parameters of the exercise – making it more useful by throwing in a few general questions, or making it less threatening by skirting material where Services’ mind is already made up

Embedding service user involvement in your organisation

If this does ever happen to you, look at the materials on “organisational change” under the “Getting things done” webpage on the “Working with Services” sub-menu.

Resources

A lot of books on service user involvement were either written for academics and are fairly useless for us, or they’re focused on a specific field of work. The latter is a serious consideration, as some groups such as people with severe learning disabilities require very specialist work.

It’s well worth Googling, because as with many areas, there’s a tremendous amount of good stuff out there, but you need to dig. For example, Participation Works produced some terrific guides to service user involvement for young people and Shaping Our Lives have done a huge amount of work around involvement of disabled people. There are some good resources on the National Lottery Community Fund website, too.

When it comes to evaluation of the project, NCVO Knowhow has a great page called Participatory methods. This is full of ideas as to how to involve service users more deeply in feeding back on the project.

If you’re giving a completely blank sheet of paper, with plenty of service user involvement support (e.g., an active and staffed involvement group in place) and lots of time, Tenny Pinheiro’s The Service Startup: Design Thinking Gets Lean is brilliant and well develop you an excellent service with strong service user involvement.