And we had a writing day the other day, and we had two service users there and about four researchers. And, you know so they get, they’re paid their honorariums for a full day and travel and lunch which is, you know, it’s not inconsiderable. And they are there and they are listening, but I can’t say they’re contributing to anything because it’s too hard. You know, we’re talking about where will we publish and what’s the journal impact factor and blah, blah, blah. What relevance has that got to them? So, whilst we do want their involvement, you know, managing that I mean they’re probably perfectly happy, I think. They had a nice day. But I don’t think it was really good value for money, if we’re really harsh.

And what I find, as a research lead, is that it falls off the bottom of people’s agendas all the time. So, we might have them [users] in the research management group, yes, but this real involvement thing I make it a standing item on every agenda.

I mean it distresses me because I realise it’s been, we haven’t done this as well as we should, even though I’m pushing and pushing and pushing it. I can’t get it through the layers. So, some people would say, “You need really top level support for this.” But I find that now I am at fairly high level, I can’t get it through the layers to actually get into action.

To do it properly is much more resource intensive than most people realise, or are prepared to pay. It is resource intensive, and also you’ve just got to keep on it all the time. So, it’s very important not to mess around your service users by having difficult claiming structures and processes and this sort of thing. You have to look after your service user representatives and people throughout the whole process. So the way we make it work, to the extent that we do, is by having someone who champions it here. And then, and it’s a real ethos throughout the whole team. And our admin staff actually play a really strong role in maintaining contact with our service users as well. And so it’s a very personalised thing. So I do think that’s worth the money because, I do think that we have confidence that we’re always including service users in all our projects at every stage. However, I still don’t think we’re getting that quality.

So, they’ve come in with a specific experience. I mean everybody’s got their experience including us as researchers. But they come in with their experience and we want them as service users. But they’re sitting around the table with a lot of people who are professional, who are used to sitting at meetings all the time, and are used to sticking to an agenda and talking when they’ve got something to say generally, and not hogging the meeting. And often service users, they don’t have that sort of meeting discipline. Well why would they? But it is quite hard to handle because you get other people round the table rolling their eyes and getting bored and then not coming to the next meeting. So I’m often chairing meetings because I’m a chief investigator quite often, not always, but quite often I’m chairing meetings, and I make a great effort to be inclusive. So I’m very clear that people shouldn’t use jargon; I’m very clear that everybody is to communicate at a level that everyone can understand. Sometimes I forget, but most of the time I think I’m much better at doing that than a lot of people. Because when I’m sitting in meetings with other people chairing, I think, ‘People around this table are not going to understand all this stuff; you need to speak in a language that’s accessible to everybody. People don’t. So sometimes service users are sitting there very excluded. Well, I don’t think we do that on my projects, we include them. But then there’s a sort of thing that they have to take the floor even if they haven’t got anything to say. It’s like they’re being paid so therefore they’ve got to say something, and they tend to talk a lot. So it’s quite difficult to manage staying on the agenda, staying relevant, and I think chairing is really important. So you have to include everyone round the table. But it is different with service users because they’re not professional; they’re not usually, sometimes they are, but usually they’re not people who are used to that environment, and sort of can manage that environment. So, here’s another example. We might have a meeting where we’ve got a very senior health service manager or a policy colleague from the government there. So, this is a perfect opportunity for a service user to make their political points which are nothing to do with the project. And then the government person feels completely harangued and doesn’t want to come next time. These are all issues that we have to manage.

And so what are the skills that you, as a researcher, need in order to involve people?

Communication, clarity, inclusivity those things

If you’re doing a project about people with, I don’t know, learning difficulties or something how do you, how does that work? Or kids, or people, say, from deprived backgrounds, where people don’t tend to have those skills of articulacy is that a word? And able to, yeah, just the following of an agenda and sticking to a point and all those things. So then I think we have to be really flexible about the way we involve people and. So, for instance, we might have panel of young mums or something; or teenagers, or even we’ve done these projects with older people that fall. To have an eighty or ninety year old person that’s had a fall, sitting at a meeting with twenty people or two of them, a lot of it is completely boring to them anyway because we’re talking about, you know, getting service support costs or excess treatment costs or blah, blah, blah, which actually has no relevance to the operational requirements of the project, are really not relevant. But once you start excluding them from some bits that’s a fine line. So, but if you invite people who spend two hours around a table, that’s a lot to ask of someone that’s got chronic conditions or is frail. So then we have to be trying to involve people in other ways and that might be a separate panel, it might be a community health council, it might be going to see people individually in their homes. And what I find, as a research lead, is that it falls off the bottom of people’s agendas all the time. So we might have them in the research management group, yes, but this real involvement thing I make it a standing agenda item on every agenda

But, I have to push, push, push, push because people don’t see it as the same priority as they do other things on their lists.

And we were keen to hear the perspectives of patients, and we wanted to get somebody involved in the steering group to advise on what were the issues, how we captured that data. So, we had this very, very lovely lady. I think this was before INVOLVE, there were no good practice guidelines about doing it at that point. But, I don’t know how we did it; we managed to get this lady. Oh, it was from, it was through Asthma UK, I think, we got them through a charity.

And she was great. She was really fantastic. She’d had experience of emergency ambulance attendance for a life threatening asthma attack. She’d got continuing COPD or emphysema, so she was not in very robust health, and so we had to take account of that, and she couldn’t always come to the office, so sometimes I’d go to her house. And so we had to be flexible in the ways we included her in the research. And it just, it was really amazing because there were, sitting round the table for the steering group, we had A&E consultants and paramedics and an asthma specialist nurse and a whole variety of people from the ambulance service, from the hospitals and elsewhere. And they’d be talking about what we should be measuring; what were the important things. And then she would say something like, “Do you know what it feels like to be asked to blow into the peak flow measure when you think you’re not going to get another breath?” And for me that completely grounded us in what we were supposed to be, the actual experience of patients, and what we were supposed to be concentrating on

Looking back now, we had her on her own and we should have had, you know, another person supporting her. But she was incredibly happy to be involved and I supported her personally. So we became, we bonded, you know, we became quite close. I haven’t stayed in touch with her, but during that period, so I know that she felt very supported. But it did require quite a lot of bravery for her to speak up in those meetings when, especially the medics, were talking about the more, well I suppose the medical and clinical aspects of care. And it did require bravery to say, “Hold on a minute, you’re forgetting about what it feels like.” And so now we would haven’t had her doing it on her own, we’d have, we’d facilitate that much more in a much more structured way. And we wouldn’t have one person, we’d have two and we’d be paying them, we’d be following the good practice guidelines. But I don’t know if actually all those guidelines actually improve the quality of the input we’re getting because that was fantastic input. And she fundamentally changed certainly the interpretation and the write up of what we did then and we published that. So I think that she made a contribution to the way we did the research and the way we interpreted the research.

Sitting round the table for the steering group, we had A&E consultants and paramedics and an asthma specialist nurse and a whole variety of people from the ambulance service, from the hospitals and elsewhere. And they’d be talking about what we should be measuring; what were the important things. And then she [asthma patient] would say something like, “Do you know what it feels like to be asked to blow into the peak flow measure when you think you’re not going to get another breath?” And for me that completely grounded us in the actual experience of patients, and what we were supposed to be concentrating on. But it was also completely interesting because the reaction of the people round the table was not the same as mine. There was a particular, I remember, one A&E consultant who was very dismissive of the patient perspective. So, for me it brought us back to what we should be doing. For him it was like, Ah will you please, you know, shut that lady up? He was really dismissive. So, which only made me all the more determined to involve people in the future.

And why do you think he was dismissive? What do you think his concerns were?

He didn’t want to hear about the experience of a patient. He just, for him, the important thing was, one of the findings of the audit was that their ambulance crews are supposed to take a peak flow measure when they arrive, and then after; and then during and at the end; at least when they hand over to the A&E department, but possibly in-between as well. And so we were looking at changes in the peak flow measure, between when the crew had arrived, and when they were taken to hospital. So he was only interested in those measures. He wasn’t at all interested in what that felt like to the patient, and he didn’t want to hear about it. So, but the paramedics were. We were interested to increase the rate of peak flow measures that were taken. The paramedics were sometimes writing, ‘patient refused’ or ‘difficult to obtain,’ or something. And so as far as I was concerned we needed to understand that. But as far as he was concerned we just needed to get the rate up.