Neil

Age at interview: 65

Brief Outline: Neil got involved in PPI about three years ago after having a stroke. He wanted to do something that would help him in his recovery.

Background: Neil is married and has two grown-up children, aged 39 and 36. He is a retired NATO Visiting Professor of physics. Ethnic background: White Scottish.

More about me...

Neil had a stroke about six years ago. As well as some physical problems, his memory and mental sharpness were affected by it. He started doing PPI as a way of restoring some of his former abilities. He contacted Involving People, the main PPI organisation in Wales, and his first activity involved reviewing an information website. Things soon snowballed and he became more involved in health research. 

Before he retired, Neil worked as an academic physicist, so he brought lots of research skills and knowledge to PPI. However, there were some types of research he didn’t really know much about and felt like he was “treading water” until he attended a training course about six months later. Since then he has attended further training and said that, “It builds your confidence so that you can speak the language...and communicate with researchers”. He now presents on courses and teaches others about getting involved in PPI. 

When he first got involved, Neil had some difficulties speaking because of his stroke and preferred taking part in teleconferences rather than attending meetings. The researchers he was working with were happy to accommodate this. He said this was an example of best practice, where researchers listen to lay people and take into account their needs when engaging them in PPI. He thinks evaluation, training and feedback are very important to PPI, so after every project he is involved in, he likes to provide the research team with a report about his experience. He comments on everything from the hotel accommodation to recommendations about how the team could do PPI more effectively. It is also very important to him that feedback is reciprocated and that researchers tell lay people how they’ve put their suggestions into practice. 

When he started doing PPI, Neil found it very exciting and through Involving People applied to help out on all the research projects he could. He is now much more selective because he thinks other people should have the chance to get involved and that the opportunities for PPI should be spread around. He has found that the benefits to doing PPI include travel and meeting interesting people. He also feels it has significantly helped his stroke recovery, especially by improving his self-confidence and through chance conversations he’s had with academics and clinicians about what medication he should be taking since his stroke. 

Neil thinks the attitude to PPI has changed even over the last few years from being tokenistic to involving patients in a partnership throughout the whole process. He said it was important that researchers involve people in PPI who will benefit from the research they’re conducting. He believes in the value of including personal stories in the research process because it makes research better.

Good presentation of the aims and results of research is crucial, but researchers don’t always do it well. Neil has spoken at conferences and re-written lay summaries.

One of my jobs before I retired was as a teacher trainer, post graduate certificate in education. So my job was to not only set an example, but assess people on presenting information in a way which would engage the audience and would convey the meaning effectively and hopefully permanently; it would stick. So I went to the first of these conferences and fairly critical of the presentation skills of some of the presenters [laughs]. So I said in my lack of wisdom, you know, "I don't think that was done very well." So of course next year they said, "Well you can do it then." [Laughs]. Fortunately it was only a short slot that I was given, but yeah you see presentation skills – if you're going to sell your research project to the general public, there's a way of addressing people at that level, which is nothing like symposia language and it's a different type of speaking. 

I mean, let alone what appears on paper. One of my little jobs was on the ethics committee in North Wales and you've got to, there's a lay summary section written specifically for the lay people. Some would be frankly disgraceful – I mean is this going to be recorded? Disgraceful. It's a very strong word isn't it? But they'd just taken a chunk of their protocol and popped it in, you see. And this cut and paste thing gets my hackles no end. Because if you are supposed to be communicating the purpose and the process of your research to non-specialists then it's a job which you should take seriously, and not just say, "Well hard luck mate it's going to get through anyway on merit, so I don't care." It is important to get the public, you know, on board increasingly so now that money's getting a bit tighter, yeah.

Joining an ‘Involving People’ panel was part of Neil’s plan to recover physically and mentally after his stroke.

In my case, I moved from knowing a fair bit about physics and nothing at all about medical acronyms to now having all sorts of strange letters and combinations which I've memorised. So, yes you get new mental skills, socially it's helpful. Psychologically it's been a tremendous help for me because when you have any sort of stroke your confidence decreases enormously. You lose some functionality; physically, mentally and emotionally there's a change. So, you can either just give into that and sink or you can fight back. And one of my little battles has been to recover mentally and socially. My speech was affected from being a reasonably clear lecturer to missing certain vowel sounds and combining words, not separating them clearly. So I've had to learn to speak more slowly than I would normally do. That sort of thing was helped with IP because going along to the sort of panel meetings you're not expected to be a great expert on anything. You're just there as a lay person making a contribution and there's no sort of marks out of? ten. It's just your opinion's as good as anyone else's opinion and we'd love to hear from you. So that's a great confidence booster and I observed this in many IP [Involving People*] members; they've come on to the first meeting looking really very nervous and tongue tied. After three or four meetings they're contributing, they're at ease, you know, they're drinking their coffee easily. So it has enormous benefits. 

*Involving People is a Welsh organisation supporting patient and public involvement in research

Neil missed the training when he first started but has now been on several courses. The best was a joint workshop with researchers.

When you got involved with IP [Involving People] did you have any training or did you have anything that, you know, sort of, to help you?

Right OK, that's a good question because there is an induction course which I didn't go on for at least six months which was quite interesting. So I was, sort of, treading water for a while hoping I was doing it right and then the course came up. So, basically, I think it's once a year this induction course runs and if you happen to join the thing half way through the year of course you’ve missed the previous one, etc., so I missed it. But that was very useful, they introduced to the process of being involved in research and what the Involving People was about, what you were hoping to get from it, advantages/disadvantages. And then the second year round I was involved as a presenter saying what my experiences were, what I've learned over the year. And it's partly that – it's partly an input from lay people who have been doing it and partly from the administrators who run the scheme, so that's good. 

So overall I've been on I think it's four different courses now. All been very interesting and it does equip you, it builds your confidence so that you can speak the language, you know how to communicate with researchers, and it's very good. The best one of all, I think, was on research methods where they had a guy who had been a former researcher and a trainer of researchers, and the clientele at the course was roughly half lay and half researchers. And we were given the job in the afternoon, having sat through the morning’s talk, of trying to devise the project from scratch. So, what's your research question? How are you going to tackle it? What method are you going to use? How are you going to evaluate it? All that stuff. Tried to do that in three hours, which was a complete joke, of course, but at least you get the idea of working together as a team with, you know, the opposite side of the table. And I gave that a very high rating because it was as realistic as they could make it: the combination of input in the morning and workshop in the afternoon with the real people who were going to be involved in research, tremendously valuable.

In the early days after his stroke, Neil found phone or email contact easier than face-to-face. It helps if researchers try to fit round people’s needs.

Right, well in the early stages of stroke recovery, because you're aware that your speech is not as clear as it used to be, you become very self-aware and a bit tongue-tied. So face-to-face round a table is much more difficult than on a telephone, which itself is more difficult than emailing. So, I tried to structure, in the early days, as much writing as possible, so I had the document in front of me and I could take my time and organise it. Second thing after that, was sometimes the jobs involved interviews. So I would then try to persuade them that by phone was better than face-to-face because of my own position. So that's the way I went about it. Now I'm quite happy to do, as in this case, you know, a structured face-to-face interview. So it's a gradual process of not rushing it, but having goals in mind that you want to restore yourself to where you were or, you know, as near to that as you can get.

And in your experience have the groups you've worked with accommodated your needs or, you know, if you preferred to do something by phone but they would have preferred you to be in the meeting, would they have been OK with that?

Yeah, the best practise is that the researcher listens to the lay person, takes into account what they can do and don't want to do, and uses, basically, what's on offer. Rather than having a pre-conceived structure in which we fit the lay people, it's – we'd like to hear from you, what's the best way to do it? So, and that's just my experience of course, others may not have such a satisfactory experience, but I've been very pleased with the way it's been handled.

Neil is becoming more selective about involvement. He thinks opportunities should be rationed.

I get about probably an email a fortnight with an involvement opportunity. Back in my highly enthusiastic days about two years ago I used to just about apply for everything, it was such a great exciting novelty thing and I was so enjoying it. Over the last two years I'm now much more selective. So I think, well that's a better fit than that is so I can make more impact on that one probably. And also I find that the number of people involved has increased enormously, so that I wrote to IP and said, 'Look why don't you ration it so that those who are the old hands don't automatically, because they know the system, you know, get considered first. Spread it around more. I don't mind being less involved, you know, I'm not going to be offended by it, give the job to somebody else.' And that's been happening. So I'd say probably one in ten , no that's a bit high, one in five of the things I'm interested in I get accepted for, which is great because it means other people are getting a go at it so.

Generally involvement has moved from tokenism to lay people coming up with research ideas – but occasionally researchers can still seem defensive.

And what do you think researchers attitudes are towards PPI?

That's a huge spectrum. Some are really thrilled to bits about it now because they've been through the loop and they've seen how it works, and they've got more effective at using people's skills, and that's been tremendous. The other end, some people are still a bit paternalistic, a bit defensive, possessive, all these little nasty adjectives. You know, ‘this is my research and please don't meddle with it’ sort of thing. But I think that the trend is very much away from that now towards involving people in a useful and meaningful way.

When I joined the greatest danger was what we called tokenism where you just felt you were there for the sake of the paperwork. And gradually that has changed enormously from the minimalist role, which would have been – is this summary of the research understandable by lay people? Yes or no? Right up to now where you can actually find research projects where they've got co-applicants, lay applicants, you know, and there's a partnership right from the start where some lay person will say, "Do you know I wish we could look at so and so. Why don't you think of some way of investigating this because all these people are having this problem? Perhaps, you know, you could get a project going." And the idea actually originates, you know, from that level and the researchers think, 'Oh yeah I expect I could do something about that'. And you get this co-operation at the very start. You know, that is what I've argued for, for three years, not only I, others have done it more effectively. But it's great to see the IP involvement moving towards the front end of the project itself.

Involvement can put researchers in touch with the ‘real world’. It would be satisfying to know research made a difference to health care.

And what do you think the benefits of PPI are for research?

Well to take an example – suppose we stick in my little field of stroke research. One meeting I went to, room full of clinicians, about a dozen of them, statisticians, clinicians and the theoretical researcher as well, and two lay people were there. And pretty near the start of the meeting we were looking at getting information from users on priorities for stroke research. And I quite innocently asked the question, 'What does the Stroke Association think of your priorities?' And the meeting went silent, and it was clear straight away that they hadn't even heard of the Stroke Association. This is a stroke research group who’d not heard of the Stroke Association. I wasn't terribly impressed with that [laughs] lack of knowledge on their part. However, they very quickly remedied that and they have now got, the Stroke Association, a representative on their steering group. So some researchers, I think, need to get out and live in the real world. You know, what are the voluntary groups, what are the carer's associations which are relevant to this research? It's no good just going down some wonderfully enthusiastic path as a researcher which may or may not have an impact on the real world. Far better to say, well I would find it more satisfying to be able to say at the end of it, ‘This research had an impact on hospital practise or what GPs do. To me that is such a valuable output from research that it's well worth taking a little time at the start to get lay input.