I like being the parent carer representative on my group. I use that terminology, that’s what best describes the scenario. I was the parent, I was caring for my child, I’m in a group for people who look at research into children’s conditions and that was the requirement, was that you were a parent of a child. You can actually have the condition yourself [coughs], but I don’t think that gives you the same emotional impact if you’ve only had the condition yourself. Until I had a child I had no idea what it was like, and nothing can prepare you for the protective emotions you have towards your child. You can’t extrapolate them, just as the gentlemen who developed their own form of cancer and then were experiencing it first hand from the other side of the table. You can’t understand what that’s like, so using the word parent carer for me is very appropriate for the group that I’m in. I don’t like PPI, it’s one of these three letter acronyms that seem to be allocated to everything and it makes it sound technical. I think PPI puts normal lay people off from applying for jobs if it says a PPI. When something says a lay member, I apply for it because that word is the right word, you’re a lay member, you’re not an expert but you’re lay expertise is wanted. So I think lay and parent carer, for me, is much better than PPI or public patient involvement or whatever.

Well I would have liked to do the training but, so the barrier there was that if I gave up, what would have been two days, because I would have to travel the day before to be at something for ten o’clock or travel the day after because I can’t travel on top of attending something for a day. So to give up two days of my time for no pay, when my husband was alive and we were both self-employed, financially we couldn’t, I couldn’t really justify that. I think there was a thirty pound ex-gratis payment plus expenses but I couldn’t justify that. Now as a single parent, as a widowed parent, a constraint for me now has been to separate from my child, she suffered from separation anxiety for a long time. So to be able to attend something if it wasn’t within a normal day, again would have been too difficult. She didn’t stay with anybody else, relatives or otherwise. My daughter didn’t even want to go out to school, so to leave her at any time was difficult. This is an unusual situation and not many people have that but even when it’s not that extreme, if you’re a single parent, leaving a child in someone elses care or if you’re a carer, leaving your child in someone elses care when they have a, their own long term medical condition, can be quite complicated. I’m sure that people do have the helpful grand-parents and so forth but there are constraints. It’s difficult to do the job because of your experience, your experience might be the reason that you’re wanted but those experiences are ongoing if you’re a long term carer. So those would be the constraints.

I’ve had ME for sixteen years and my health goes up and down. I requested the date you came here because that saved me, not just the energy of two hours of driving but the energy of having to think around timings, to fit with the school run, finding somewhere to park, having the right change in case theres parking meters, whatever. So having a long term condition is tiring in its own right and then finding the time to contribute can be difficult or it can be the opposite, it can be easy. So a lot of my work comes to me via an email. Well because I have a long term condition and I don’t go out to work and I work from home, and because I work from home part-time, I can deal with the PPI requests that come into me very quickly and efficaciously and I know that I’m well respected for that because I turn things round on the day they come out. I would rather deal with it straight away because it will take me two minutes to read it or five minutes or ten minutes to read it and in fact, if I, if I forget to deal with it on the day because I really am too tired or I’m; it’s a day I’ve allocated to full-time to my other work, often I can forget about it completely and I need a prod and then when I’m prodded I respond immediately. So I tend to find that my condition doesn’t help on things like taking the time to go for training because that would then tire me for the rest of the week. If I had to drive to Manchester for a training day I might have to go the day before, I can’t often just travel on the day. Most people might jump on a train at six thirty in the morning to do a meeting, I need to budget extra time into any physical transaction I have. So if I choose to attend the meeting in London at ten o’clock till four o’clock, I might make sure I wasn’t doing something the next day.

Today I’m having a quiet day at home because yesterday I went out to work for the day. So I have to budget my time, I would, I need plenty of notice because of my condition so being given notice at something three months away I would then not book anything else in the week that I went to that meeting, not because I could only do one meeting but I know that other things will come along that I’ll need to put in that week, but I wouldn’t plan to do two big things in a week. So I find that my long term condition which is basically one that , is one of energy management, if you’re managing packets of energy, that my involvement with this would require me not to book anything else when I have involvement, if it’s a major piece of involvement. If it’s just, as I say, incoming emails, my condition’s great, I can sit there and quickly turn something around.

And what about the training that, the induction that you talked about, what did that involve?

The first half of the day was explained to us what would be required of us.

And basically what is required is to be you, because they want feedback and what it’s like to be a parent and, if you had been asked to take part in research when your parent had been, your child had been ill, you put yourself into that position when you think about what was going on. So they talked about various aspects of research, for example, taking blood. When you take blood from a child it could be painful, when you take blood from a baby, a baby has a limited amount of blood, so taking blood from babies they have to take much smaller amounts. So they talked to us about the ethics of procedures that were required so that you were able to think outside the box and not just about your own child’s illness and then you’re not too focused. So instead of me only thinking about what it was like being the mum of a child who was sick, age seven, in hospital for three weeks, I could perhaps extrapolate outwards and think about what it would have been like to be the mum of a child in the intensive care unit with a neonate, or a child who’d had an accident and then ended up in hospital for example.

So that, the training tried to broaden our ideas of what was required.

It is about not involving too much passion in the process.

Because it isn’t about only delivering your case to the table otherwise it sounds like you’re the one person beating the drum for just your one condition or the one thing that you’re worried about.

Where what you’re actually required to do is to be able to sit with a group of up to maybe eight or ten people who are experts in their field and to contribute rationally, and I believe if you want to influence them it’s best to be able to be rational and objective when commenting.

What about the language that all these things are written in, is it something that you find accessible or?

I don’t think it is for a lot of people and in fact at the end of the last meeting I attended in Southampton I was chatting over the tea break or whatever. I stay long enough to mingle and sometimes I will single out a speaker who I was interested in their talk and go and say hello, and I had a lady come up to me and she goes, “Ooh my goodness,” she said , “I don’t know how you cope.” And I said, “Oh it’s alright I’ve got a microbiology degree,” and she goes, “Oh thank goodness for that, I felt so sorry for you, the last four hours of all of that stuff, it would have been very boring otherwise.”

So it does help, I’ve always had an interest in medicine, things medical. I’ve unfortunately had a lot of exposure to illness either myself or in my family which means that when they’ve got ill I’ve researched those diseases in great detail and I have no problem with the lingo.

But I’m sure that other people would struggle with it. Perhaps other groups though, and other types of work, it’s not as technical. I am in a group where they’re looking at antibiotics and you’re always measuring the efficacy of those and I actually did a final year study at university, that might have been one of the reasons that got me extra points, was that I need a microbiology degree, but in my final year we all had to do a project as anyone does when they do a degree and I chose to do a medical microbiology degree at the London hospital and I looked at the technical term is a serum and minor gylcose side levels for an antibiotic to see whether it reached ototoxic and nephrotoxic levels in people. So add the background to that, basically I was looking at whether the blood levels of the antibiotics were getting so high that they were damaging somebody’s hearing or kidneys and, so I’m very lucky that having got that background, made it very appropriate because this group does spend a lot of time looking at, you know measures which have absolute values so you’re looking at things like that.

Whereas perhaps if you’re looking at cystic fibrosis they may be talking far more about treatments of that which is a, might be a physical thing cystic fibrosis is treated by physiotherapy for example, so there may be far less technical language. But when parents or lay people become representatives on a condition, the thing is the medical profession know that were experts in our own conditions. So you may not have the absolute scientific jargon but you might have read around your subject as much as they have or more than they have in an attempt to find a solution. And you will have stepped outside the traditional box that they’re operating in so you can bring new insights. So not having the exact lingo I don’t think is a problem because you’re normally only invited to join these things if you’ve got personal experience.

I’m not an expert and not only that, because I have, been outside the system or a user of the system I see it as a user. I don’t think that they can ever see it as a user, in fact, I’m going to tell you the story I read in the newspaper, where did I see it? There was a two page spread in my local paper and in it there were three specialists, prostate cancer specialists, who all developed prostate cancer. So the story was asking the prostate cancer specialists to discuss their treatment and what they chose to do as consultants in their field, to be patients with their own disease.

So one of them chose to have a chemotherapy and radiotherapy; one of them chose not to have the chemotherapy but to have the quality of life that he knew chemotherapy would withdraw; one of those people, one of the three people did die, one of them has survived and gone back to work, and the one that survived and went back to work put down that he could never have known what it was like to be on the other side of the fence and I think that’s what a PPI person brings is being the person who walks into the room who is terrified for their own or their child’s health and, or concerned if not terrified if you’re not in a critical condition, and who constantly comes up against the medical jargon, a system of how things work and having experienced a terminal cancer diagnosis for my husband, nothing can prepare you for the shock that you go into when you have a terminal diagnosis. And no matter how much training and no matter how many years you sat as a medical person, handing out that diagnosis and watching people in front of you, you don’t know what it’s like until you’ve been that person at home, trying to eat a dinner and throwing up at the thought of the person opposite you dying. You don’t understand that until you’ve been it. So PPI representatives should never feel that they’re on the same side and I don’t think you do. So I don’t feel I’m getting too close to them because I’ve been on my board and I’ve been allowed to stay on it for longer than three years.

I mean I’m a fifty year old person who had a microbiology degree which I completed when I was twenty one or twenty two, so for thirty years they have, if the average age is my age which generally it is, there are some people a bit older and some a bit younger, there are some PhD students who are in there mid late twenties. They are truly experts in their field.

I’m not an expert and not only that, because I have, been outside the system or a user of the system I see it as a user. I don’t think that they can ever see it as a user, in fact, I’m going to tell you the story I read in the newspaper, where did I see it? There was a two page spread in my local paper and in it there were three specialists, prostate cancer specialists, who all developed prostate cancer. So the story was asking the prostate cancer specialists to discuss their treatment and what they chose to do as consultants in their field, to be patients with their own disease.

So one of them chose to have a chemotherapy and radiotherapy; one of them chose not to have the chemotherapy but to have the quality of life that he knew chemotherapy would withdraw; one of those people, one of the three people did die, one of them has survived and gone back to work, and the one that survived and went back to work put down that he could never have known what it was like to be on the other side of the fence and I think that’s what a PPI person brings is being the person who walks into the room who is terrified for their own or their child’s health and, or concerned if not terrified if you’re not in a critical condition, and who constantly comes up against the medical jargon, a system of how things work and having experienced a terminal cancer diagnosis for my husband, nothing can prepare you for the shock that you go into when you have a terminal diagnosis. And no matter how much training and no matter how many years you sat as a medical person, handing out that diagnosis and watching people in front of you, you don’t know what it’s like until you’ve been that person at home, trying to eat a dinner and throwing up at the thought of the person opposite you dying. You don’t understand that until you’ve been it. So PPI representatives should never feel that they’re on the same side and I don’t think you do. So I don’t feel I’m getting too close to them because I’ve been on my board and I’ve been allowed to stay on it for longer than three years.

I’m only allowed to stay a little bit longer because they do always turn all of these positions which they should. I’d hope to get another one, on a different board and pro-active again and help because I know that I respond so well and my work’s encouraged. But PPIs are very essential because they just don’t understand and that article I read in the newspaper about these three gentlemen who got their own illness and took the treatment; they all were shocked and the last one who was able to go back to work said that the biggest thing it gave him was empathy. He had never understood what it was like to be on the other side of the table.

So because my daughter had a bone infection I’m the person that’s been co-opted onto the largest bone joint study that will run in this country. There may be other lay members, I haven’t been told about that yet but I’ve been involved right from the very inception of the bone and joint study. And was even able to impact the graphics that they use to invite people to join the bone and joint study. They wanted to use this skeleton, the shape of a skeleton of a baby and I felt that skeletons were quite scary and having been subjected to my own bereavement, in my past, and being worried that my child, excuse me [coughs], that my child might die when she had a bone infection, found that that was an emotional image. So the image was changed to a different one that was more fun and that was more appropriate for children as opposed to it being bones because it was about bones. So I think being involved at the very early stage of something is very exciting.

But what I did also say when I did do that was say, you know, “This is an emotional issue,” it may be me being overly sensitive, but I was supported by the other parent carer who also felt that perhaps, yeah children’s bones are sort of a the skeleton of what looked like a baby, because you know, human skeletons are different shapes at different times, so it’s obviously meant to be a baby skeleton, or a child skeleton, although it wasn’t an anatomically correct, it was a cartoony drawing, it still had a problem for me. I did explain that due to my personal experiences it might be me being over sensitive. So that was one time when I was almost worried about speaking up because I felt that I, it wasn’t necessarily a purely, you know, balanced perspective and that I was being influenced by my own personal experiences which may not have been relevant but it was important for me to say but I was nervous about saying it in case I appeared a bit silly.

I saw an advert on the internet, no it wasn’t, that’s not true. I saw an advert in the newspaper, one of the papers and I had recently looked after my daughter in hospital for three weeks. Shed had an episode of septic arthritis in the leg, in her knee, and she needed to be in hospital for a long time. They weren’t sure what antibiotics to use, they hit her with a barrage of products, the amount of products she was getting was making her ill in its own right and I could see that, but it was necessary. And then when I came out of hospital and things had calmed down, I saw the advert and they were looking for people from the allergy, immunity and infection group which was the thing I’d experienced myself and I thought, ‘Perfect I could maybe help and be a parent and comment.

And so what did you do next?

I applied for the job.

There were lots of applicants across various topics. As I say, I mentioned that I applied for an allergy, immunity and infection group with parent involvement. I possibly was looked at for two others because of my academic background and other health issues that I’d had myself that I could help with, but we settled on that. I was interviewed on the telephone and then after that was invited to meet with, having been given the position, was invited to meet with all the other parents at a location in Liverpool, the, all the other people that were involved. So we were all inducted into the process of what it’s like to be a parent involved in research and what that might entail. Then we were also involved in an exercise to look at existing research that was going to happen in Europe and vote for research that we thought would be most relevant, so we were getting a chance to impact the direction of a group of research projects that were planned across Europe.