Charles

Charles has been involved in patient and public involvement in health research for about three years. The majority of his involvement has been in orthopaedic research.

Charless retirement plans changed when his wife developed some health problems. She required serious spinal surgery and later developed memory problems, which meant they had to re-evaluate their plans. When she was in hospital, Charles heard about opportunities for people to get involved in research as lay representatives. He was invited to join a local PPI group after a chance meeting with a former colleague’s wife, who chairs the group.

Since becoming involved in PPI in health research, Charles has been commenting on proposals and writing participant information sheets for research projects. Accurately representing the research requires quite a bit of skill and it is important to get this right as the information sheet is vital for recruiting participants. He is becoming more and more involved in different aspects of health research and has recently been invited to join the James Lind Alliance, which aims to suggest priorities for research.

Charles believes the goal of PPI is to support the NHS, and guide and improve service development and delivery. He thinks it is important to measure the impact of PPI and suggested this could be achieved by indicating what changes have been made as a result of public and patient input. But care needs to be taken to ensure it is captured accurately. Understanding impact will help identify what is going well and what needs to be improved. Assessing the impact of PPI should aim to set standards rather than create regulations.

There are personal benefits to be gained from being involved in PPI and Charles feels he gets a lot from what he does. He finds working with bright people enjoyable and satisfying; he gains knowledge that can be beneficial to his family’s health; and he has found another way to spend his retirement. He thinks anyone can contribute, even people who are strongly critical. To take part, people need free time to devote to it, and an interest in how the health service is run and how care is delivered. He would like researchers to be open-minded to the potential benefits of PPI.

Charles thinks that measuring impact is important but very difficult, and we need to be careful what we measure.

Age at interview 71

Gender Male

Is it more about quality rather than quantity in terms of impact?

Oh absolutely. It has to be because it, you need to measure things because of the old adage that what gets measured gets done. And if you don’t measure things in some way or other then you have no idea whether you’re doing well or doing badly. But you need to be very, very careful what you measure otherwise you start setting metrics which distort the provision of the service, and in an ideal world you want an element of coupling of the career success of the service provider at a personal level to the quality of the service which they provide to the service user. You know if you, I don’t know, suppose you paid five pounds for every patient who had a flu jab, you could be pretty sure that lots of people would get flu jabs because that’s a nice mechanical thing which you can set up and which you can manage. But if you take that the more complicated things, you might want to provide a more expensive treatment on the grounds that it would be a better outcome for the patient and then you wouldn’t see that patient again. So it’s not just a question of through-putting, how many patients can you get through your door. It’s a very, very difficult question, but I think there should be some kind of measurement. If you ask me how, I couldn’t answer that question at the moment.

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Charles doesn’t like acronyms like PPI’ or the term service user. Patient representative has a clearer meaning.

Age at interview 71

Gender Male

It’s very difficult because I used to think that I came from a technical area which had a lot of acronyms in it, until I actually got into the health field and I was absolutely overwhelmed by them [laughs]. I dislike acronyms because, because actually it’s all too easy to lose people and if you’re trying to, if you’re a health service provider and you’re trying to communicate with the public, even a simple term like a service user’, that took a while to soak into me exactly what was meant. I quite like the term, a patient rep. The difficulty is that that would tend prima facie to exclude carers or members of the public who were concerned to improve health care in their particular area. But I really don’t like, you know, PPIs or service users and the rest of it, and if I’m forced back into a corner then it’s a patient representative, or I guess a member of the public. I think things should be very simple and very transparent. It’s very, very hard to maintain that in this field.

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Patients can probably be involved in all types of research and they will make a positive difference.

Age at interview 71

Gender Male

Well, it’s something of a platitude I suppose, but the simplest message is you’ve got to do it anyway to comply with the regulations, so if you do it with an open mind, you might find that there are benefits to your function out of the PPI involvement.

And are there any types of health research where PPI isn’t useful?

There may be, but nothing springs to mind. I would have thought that there would be a role for PPI actually in every possible field. You know, mental health, paediatric care, cardiac care, all of it. Because, almost by definition in all fields of health provision, there will be people who are drawing on that health provision, and they will have a view on how that care is provided. So I can’t really see Once a patient is involved, or a member of the public is involved, i.e. once your medical research gets out of the laboratory and is actually being administered to patients or members of the public who are patients, then those people will have a voice and should have a voice.

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As a retired scientist Charles missed the intellectual contact. He was also interested to find out more about his wifes condition, and help others

Age at interview 71

Gender Male

So those are the two strands. I think that the main driver is very much personal. For example, I probably wouldn’t be so interested in childhood complaints or kidney complaints or anything like that. But I’ve got involved in the memory side of things and in orthopaedic research. And then through the orthopaedic bit, because although the PPI groups exist, I suppose really to make an input from the patients into the providers of care. It also works in the opposite direction because the medics in many areas actually need PPI input and they need patient input into all their projects. So I’ve been drawn into two or three of those; I’m the patient rep on two or three of the [hospital name] projects and I guess that [laughs], that is a summary of how I got from there to here.

Brilliant thank you very much. Can I just clarify one of the things that you said? You said that the things that you get yourself involved in are personal interests. Is that a personal interest just out of, you know, I’m interested in this type of research or do you think it was linked to your wifes experience?

Oh definitely linked to our own family experience. I sort of feel if this is going on in and around the family then I want to understand what’s going on because the more I understand about it, the more comfortable I feel about it, although that’s not always the case. But also the more I understand, the better I can contribute. There are other strands as well, you know, theres a strand of altruism that, you know if you can assist a research project then that’s good because that’s my background. And the other thing is that when I retired one of the things that I really, really missed was the intellectual contact with very good people and although I’m not at all a medic I’m actually a physical scientist, even a sort of engineer rather, as much a scientist, and I have no medical background but this brings me back into contact with very bright, very inquisitive, very caring, very conscientious people and I enjoy that contact.

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Charles brings his skills as a retired research scientist but you don’t have to be a specialist. Time, interest and persistence are more important.

Age at interview 71

Gender Male

Undoubtedly the, my own technical background helps that enormously, but if I didnt have that technical background and I simply had a curiosity then, in the days of the internet and, you know, search engines and masses and masses of information, I’m sure I can dig to the bottom of it. But I, my technical background helps. It helps particularly not just in the assessment of what is being written, but in looking for structures and the iron logic of the thread of the research and the implementation. You know Ive spent years doing that and so that it’s a tool that I can bring to the problem.

So what skills do PPI reps need to be involved?

They certainly need, they need time and an interest in the provision of medical services. I think theres a range of skills and you would probably find a range of PPI reps actually deploying their own individual skills to make their own individual kind of contribution.

I mean if you look at the Mid-Staffs report*, you know, that, one of the main thrusts in the whole of the Mid-Staffs affair has been the woman, I think her name was Bailey who, whose mother died in the hospital and she has been, all through, has been a very, very stringent critic of that hospital care, and I guess when she started out she possibly didnt have any specialist knowledge. So what she has, what she has brought to the party if you like, is her own painful experience of that care and that has been her contribution along with a dogged persistence to see those, you know, shortcomings remedied. And in a way, you know, your strongest critic is your best friend, the one you should listen to hardest [laughs].

* Charles is referring to the Francis Inquiry into poor quality care at Mid Staffordshire NHS Foundation Trust, and the campaign mounted by relatives of patients who had died.

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Working with some very bright people has filled a gap in Charles’s life after retirement. It would be icing on the cake to learn later about the difference it’s made.

Age at interview 71

Gender Male

Well at a personal level I’ve gained a lot from it. I’ve gained knowledge of things which directly bear upon our family health. I have gained satisfaction and enjoyment of working with some very bright people and the sort of reward of feeling that what I’ve done is actually been useful and, I mean there are all sorts of buzz words like, ‘esteem’ and ‘self-worth’ and that sort of thing, but when you actually stop working, if you retire, then, and you step back from that, it may be that, you know, if you stopped working you would be able to, I don’t know, go and take up watercolour painting or you go and travel the world or something like that. But if you retire at the end of a long career then, and maybe if your physical opportunities are limited in some way, and ours were limited by my wifes orthopaedic problems, then a lot of the drive force of your life has suddenly been removed from you. And your self-regard and intellectual stimulation, all of those things, are suddenly taken away and the PPI involvement is directly relevant to our family. It’s intellectually stimulating and it’s good to work with good people, it’s good to have the respect of good people, that’s very satisfying. And I suppose the icing on the cake would be if in five years’ time, one of these guys came back to me and said, “You know that project that we did? Well it’s really, really worked.” I would think that was great.

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