Brin

Age at interview: 54

Brief Outline:

Brin has been involved in PPI in health research for about seven years. He became involved after he had a stroke.

Background:

Brin is married with three children, aged 26, 24 and 23. He worked as a secondary school teacher and took early retirement after a stroke. Ethnic background: White/British.

More about me...

After he had his stroke, Brin tried to return to his job, but soon realised that he could no longer work in the same way as before, so he took early retirement. He happened to hear an advert for a roller skate study being run by his local university and thought it would be good to get involved. Since then, he has worked on more than thirty research projects both as a participant and a PPI representative. 

Initially Brin took part in research to improve his physical problems, but getting involved in PPI changed his to focus to improving the cognitive and psychological side effects of the stroke. He has made a great recovery, but still finds some things difficult. For example, he can feel quite anxious before doing a teleconference because he finds it more difficult to process information from listening alone. 

It is important to Brin that his role doesn’t mean doing other people’s jobs for them, but he is happy to do anything that is reasonable. He believes he is there to be a “true critical friend” to researchers, ensuring that what’s important to patients remains at the front of their minds. The way he discusses issues with researchers is important and he thinks a good PPI rep offers constructive criticism in an informed and tempered way. 

Brin volunteered to participate in a film documenting his PPI journey, which was made available on the NIHR website and was also written about in The Guardian newspaper. He has given some talks promoting the Stroke Research Network he belongs to and would like to present research findings at conferences with the support of academics who could respond to the tough questions that may be asked. 

Over the years, Brin has noticed that PPI has gained more credibility and respect from universities, but, whilst all his financial costs associated with PPI are reimbursed, it usually takes a long time for this to happen and he would like to see this change. He is pleased that opinions about PPI are changing because he strongly believes in the value of patient input in research and would encourage other people to get involved because he has gained so much from it.

Brin produced a film publicising patient and public involvement for the Stroke Research Network.

I'm quite clear in my own mind that I won't do other people's jobs for them. You know I'm not… I'm a volunteer, I'm not paid, I cover my expenses and that's all I really want from it. But I will do anything that I think is reasonable and possible so when I was asked; when I volunteered I wasn't really, I was, I volunteered to take on-board the PPI research film for the [place name] Stroke Research Network, it was something that came out of a meeting that I agreed that I thought I could actually deliver a film on getting involved in research and what it means and to highlight the local research in the [place name] and I was lucky, I called in some favours from all of the people that I'd come across and everybody said yes and that went live at the end of 2011 and The Guardian picked it up. It's been on the NIHR website for a while, my research journey and I'm very proud of it. I've been to a few conferences on the back of it [laughs] but it was just a reflection of me, my personality, always wanting to be busy, always wanting to push myself. And because the people that I involved in the film recognised that, everyone was willing to be part of it. Other aspects of my PPI work involve being a, a supporter of the network, pushing the boundaries of research and research informed government decision making – things like the NICE guidelines and I've now got back my public speaking skills so I've participated in several national and local conferences doing a variety of things. That started in 2011 when a friend of the family was heading up the introduction of the national leadership fellowship for the NHS and it was being launched in Westminster in May 2011. And I was asked if I was, felt I was in a position to comment on my observations of good leadership and management as a consequence of my stroke and I said I could probably put something together. Then I was told that I'd be following on from Andrew Lansley and that clinched it. He was having a really bad time back in May 2011 and I thought, 'I can't do worse than him,' [laughs] but then he got the, he got the push so maybe the Sports Illustrated effect is following me, I don't know.

What’s needed is someone who can be a ‘true critical friend’.

What do you think makes a good PPI rep?

Somebody that is very self-critical, that is honest. They have to have a certain level of passion but they've got to keep it under rein. They've got to show respect as well as have respect from the groups that they're working with, if be they be clinicians or academics or politicians and you know they have to engage in a true way and I think ultimately be a critical friend. I think the role of a true critical friend is really powerful because if you have that respect in place, you can criticise but you can do it in such a way if you're informed that then people take notice of you. You know I think a good PPI rep ensures that what they say is tempered, informed and goes down in the minutes.

It’s often assumed more senior researchers are more sceptical about involvement, but Brin has found some are very open to it.

Well the people that I work with they are definitely improving you know, whether that's my input or whether it's just their experience as well. You know because I think you have to accept that researchers learn constantly and unless they're sort of old lags and they may have more difficulty with PPI. Some of the more senior academics that I've been involved with have been the quickest to learn which has been really rewarding.

Why's that?

Because I think, you know, I'm like anybody else, I had a stereotypical view of senior academics. There have been one or two people who have reinforced that stereotype recently but I've got, woe betide them because my self-confidence is back and I've managed to show them the error of their ways. But there are other academics who have been very, very humble in their acknowledgement of room to improve, put it that way.

Brin thought involvement would aid his physical stroke recovery, but it has also helped him psychologically in a way he never imagined.

I think when I first got involved with stroke research, as I said, earlier it was because I wanted to improve physically, but that very slowly changed into being involved for my cognitive recovery and my psychological recovery. Things that I didn't understand or appreciate how much had changed as a consequence of my stroke and I'm pretty sure that being involved in the PPI element of the work that I do has helped me to overcome those psychological problems and neuroplasticity rocks [laughs].

And in what ways do you think that the PPI has actually helped?

I think PPI has given me a focus – something that as a teacher, and I was quite willing to go the extra mile to support my students, and so now all I've done is swapped my sixteen and seventeen year old young people for a wider variety of ages and helped them, you know, I can use all of the skills that I did have as a teacher to support people who have had strokes or acquired brain injuries, to help them to understand what's happened to them which in turn, once they've embraced that reality they can then start to move on themselves and it's just so rewarding to see people blossom once they've grasped the nettle. And I'm quite sure that you, you can't improve until you've done that and nobody is going to wave a magic wand for you to get better, you've got to do most of it yourself and you can make your own luck which is what PPI does and what it's done for me, you know, it really has created an environment where I can flourish in a completely different way, a way that I would never have believed possible, just four years ago.

If involvement is done well and people are treated with respect, then it will lead to improvements.

The goals for PPI are to recognise that patients have a valid input into research; they have a valid voice to improve health services, you know that means that patient groups in hospitals, in doctors surgeries with the clinical commissioning groups – all of that PPI work which is starting to happen could make changes that are significant if you get the right people involved. It's the same as any other organisation – if you have the right people in an organisation, the right managers, the right workforce – you do a good job. If you get the right PPI representatives in place you will see improvements and if they're treated with respect and with dignity and they're given correct feedback for their time they will work hard and they will deliver what everybody wants which is improvement.

OK and…

Sounds like a script, it's not.

‘Service user’ feels patronising to Brin; he thinks ‘patient’ is better, or ‘stroke activist’.

Yeah I hate the term service user, I really do loathe it. I think it's very, very patronising, very demeaning. You know I have a very good example of my first experience of being a service user. It was back in 2009 when I took part in a seminar on skills for health in [place name] and there was a professional facilitator for the conference, for the workshop and we had a break, normal break out to tables and there was a table for the academics, a table for the clinicians and there was a table laid with the users and that was for me, [laughs] which I was so angry about you know. I felt like getting out a twenty pound note and pretending to snort something illegal, it just, it felt that bad. You know I was a bit precious about what I called myself early after the stroke, you know. I didn't want to be a stroke victim because I think that's a dangerous term and I didn't want to be a stroke survivor because I thought that was a bit clinging on, you know, with your fingers and I wasn't there and I was far, way beyond that and I went through a time when I called myself a strokie because you'd got foodies and various other people like that and it just sounded a little bit softer but it had a function. It was easy to say if your aphasic and now I call myself a stroke activist because that's what I am.

And I can back it up. So all the other terminology, I think some people want to be just called patients. I think that's safer. If we've had some form of injury or illness we're a patient. Everybody's been…had some experience of being a patient at some time, I think that's just a safer, kinder, more easily understood term – it's all encompassing but service user is a no no. 

Some lay people need to get involved at a political level, to push the government and NHS to take involvement really seriously.

I think we're probably at a watershed in terms of PPI. I think the government and the NHS mandarins need to really take PPI seriously and get out of their tick box mentality. And the best way I think for that to happen is for people that are, patients that are heavily involved in PPI to actually get involved in committee work in the political world and I don't…it's not something I aspire to but it probably is the best way of getting the outcomes that I'd like to see. But once there to be treated with respect, it's a very dangerous route to go down. I think I would crumble at the moment even with my new found self-confidence. But I'm a pragmatist and I accept that there are certain routes that you have to go down in order to make change sadly.

Get involved – you’ve got nothing to lose and everything to gain.

What would you say to someone who was thinking about getting involved in PPI?

I think you've got nothing to lose and everything to gain. You know I don't think you should go into PPI with an expectation that suddenly you're going to get better. But I think if you do get involved, you can be very surprised about how valuable you find you can be and that improves your self-esteem, it improves your level of confidence and that has a halo effect on other aspects of your life and I think it's a great way of…I've used it as a form of therapy and I wouldn't have believed it, I'd have balked at that suggestion; no but that's really what it's been. And I probably suffered from low self-esteem for years and years and years because I worked in this highly academic staffed institution and constantly delivered the most ridiculous tasks, outcomes because that's what I was programmed to do. And I've had my eyes opened. So anybody else wanting to improve now I'd just say, "Well you can, it's there for you to take. Try it.