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Transcript – Programme 30: SUCCESSful Research into Chronic Conditions

How a patient group is get­ting involved in set­ting health pol­i­cy for chron­ic conditions

To lis­ten to this pro­gramme, please click here.

How can patients with chron­ic pain get involved with research into man­ag­ing their con­di­tion? Paul Evans talks to SUCCESS (Ser­vice Users with Chron­ic Con­di­tions Encour­ag­ing Sen­si­ble Solu­tions) a group of patients, car­ers and for­mer patients with expe­ri­ence of chron­ic con­di­tions who work with researchers at Swansea Uni­ver­si­ty. The ser­vice users get involved with advis­ing research teams work­ing on health­care pol­i­cy, ensur­ing that patients’ pri­or­i­ties are reflect­ed in social research and pol­i­cy and that researchers get the ben­e­fits of the ser­vice users’ expertise.

Issues cov­ered in this pro­gramme include: Med­ical research, pol­i­cy, patient involve­ment, patient voice, patient expe­ri­ence, com­mu­ni­ty health ser­vice, drugs, foot pain, dia­betes, clin­i­cal study, head injury, mem­o­ry and anky­los­ing spondylitis.

Paul Evans: Hel­lo, I’m Paul Evans and wel­come to Air­ing Pain. The pro­gramme brought to you by Pain Con­cern, the UK char­i­ty that pro­vides infor­ma­tion and sup­port for those of us who live with pain. This edition’s made pos­si­ble by Pain Concern’s sup­port­ers and friends, and more infor­ma­tion on fundrais­ing efforts is avail­able on our Just Giv­ing page at Painconcern.org.uk.

John Fly­nn: The ini­tial begin­ning was scary and there was nobody that you could turn round to, to talk about it.

Jill Edge: I meet peo­ple who are far worse off than me, I only have one chron­ic con­di­tion. Many of the peo­ple in the group have more than one, some of them have sev­er­al, and they have to man­age those as well, and they’re pre­pared to come to meet­ings, and they’re pre­pared to try and do research to help oth­er peo­ple in the future.

Mostyn Toghill: You treat a spe­cif­ic con­di­tion by find­ing treat­ment for the con­di­tion, but the asso­ci­at­ed pain, frus­tra­tion, anger, dis­ap­point­ment, fear and all the rest of it that’s asso­ci­at­ed with long term ill­ness, they’re com­mon regard­less what the ill­ness, they’re com­mon ground across the board.

Fly­nn: The first doc­tor you get, he can either break you or make you. He didn’t see me as a per­son, he saw me as a brain and that angered me.

Evans: Now the impor­tance of the patient’s expe­ri­ence and input into the map­ping of health man­age­ment and pol­i­cy is some­thing we’ve dealt with in pre­vi­ous edi­tions of Air­ing Pain. But in today’s pro­gramme I want to look at how that same expe­ri­ence of peo­ple with chron­ic con­di­tions can be used to influ­ence research into health and social care. SUCCESS is an acronym for Ser­vice Users with Chron­ic Con­di­tions Encour­ag­ing Sen­si­ble Solu­tions. And they’re a group of patients, car­ers and for­mer patients who all have expe­ri­ence of chron­ic con­di­tions. So ear­li­er this year I went along to one of their meet­ings at Swansea Uni­ver­si­ty. The first per­son I spoke to was Angela Evans, she’s a Research Offi­cer at the university.

Angela Evans: They don’t want to be involved in research as the sub­jects of research, they don’t want to give data, they want to shape the way that research is tak­ing place. They want to shape the research agen­da, so decide what sort of ques­tions are asked and they want to decide how those ques­tions are asked. And then try and help run the research, with the very long term aim that it makes a dif­fer­ence to the ser­vices. They them­selves prob­a­bly won’t ben­e­fit, they all recog­nise that but they all want to make some con­tri­bu­tion, using their lived expe­ri­ence, make some con­tri­bu­tion towards improv­ing the ser­vices in the future.

SUCESS stands for Ser­vice Users with Chron­ic Con­di­tions Enabling Sen­si­ble Solu­tions – good name ‘cos it does what it says on the tin, doesn’t it?

Evans: So how did it come about?

A Evans: In 2007 the Welsh Gov­ern­ment launched a new pol­i­cy to improve the man­age­ment of chron­ic con­di­tions. They com­mis­sioned Swansea Uni­ver­si­ty to eval­u­ate that pol­i­cy – Is it going to work? Has it worked? That’s the ques­tions we’ve been try­ing to answer for a cou­ple of years. When we start­ed plan­ning that research we made an explic­it deci­sion to include ser­vice users in that, because we felt it would make the research bet­ter. It would help us ask bet­ter ques­tions and try and answer them in a more effec­tive way.

So I was giv­en the task, because of my inter­est, in pulling togeth­er a pool of peo­ple who could take part in the research. We were research­ing a whole pro­gramme of research, this wasn’t an oppor­tu­ni­ty for two peo­ple to come along and sit on one research study, I need­ed a process that would enable peo­ple to be involved in sev­er­al research stud­ies, a whole pro­gramme of research. So I pulled togeth­er a pool of peo­ple and they chose the process for them being involved, if you give peo­ple a say in how things hap­pen, you’re more like­ly to get an effec­tive process. So they set up this organ­i­sa­tion, which has become SUCCESS, and they’ve decid­ed how it runs, they’ve decid­ed the key prin­ci­ples. And they’re key prin­ci­ples like, if we’re involved, then we get involved because we think the research will be better.

[Noise of voic­es at meet­ing, tea cups clinking.]

Edge: [bang­ing] Can we resume? Now it’s just gone half past one, right, just before we start. Now Angela, you are record­ing this aren’t you?

[Cuts to interview]

Evans: You men­tioned the chron­ic con­di­tions man­age­ment policy?

A Evans: Yeah.

Evans: What was that?

A Evans: It’s a very inno­v­a­tive pol­i­cy. It’s the Welsh Government’s response to the prob­lem that exists in health ser­vices across Europe – increas­ing num­bers of peo­ple who have chron­ic con­di­tions and need more and more sup­port from health ser­vices, and how do you do that and main­tain equi­table and effec­tive health ser­vices? So the Welsh Government’s response was this chron­ic con­di­tions pol­i­cy. And it’s try­ing to set up ser­vices which help peo­ple man­age their chron­ic con­di­tion to stop it dete­ri­o­rat­ing and help peo­ple stop get­ting a chron­ic con­di­tion if they’re at risk of it.

One of the unusu­al things about it is that it’s a pol­i­cy for all chron­ic con­di­tions, not just the main ones which peo­ple expe­ri­ence. And that’s because they believe that there are com­mon expe­ri­ences that you have if you have a chron­ic con­di­tion. And the main focus of the pol­i­cy is to move ser­vices out of sec­ondary care and into the pri­ma­ry care sec­tor, or the com­mu­ni­ty care… Real­ly to stop peo­ple need­ing to go into hos­pi­tal. What hap­pens a lot at the moment is that peo­ple have a chron­ic con­di­tion, it’s not man­aged very well, the con­di­tion flares up, they end up in hos­pi­tal, they’re sta­bilised, they’re left to go home, they’re sent home again, the con­di­tion flares up, back into hos­pi­tal. It’s a revolv­ing door syn­drome and the pol­i­cy is try­ing to improve ser­vices in the com­mu­ni­ty, so that you don’t end up dete­ri­o­rat­ing quick­ly and then need­ing to use sec­ondary care services.

[Cuts to meeting]

A Evans: The first page is actu­al­ly SUCESS meet­ings, the sec­ond page of the reg­u­lar research oppor­tu­ni­ties, so that’s the Swansea Uni­ver­si­ty research team, the prism meetings…

Female voice: Prism meet­ings? Excuse me, I thought you said prison meet­ings. [Laugh­ter].

[Cuts to interview]

Evans: Ok, we’ll come back to that mis­un­der­stand­ing lat­er. Now David Rae works in the col­lege of Human and Health Sci­ence at Swansea Uni­ver­si­ty. His back­ground is in Social Research and Policy.

David Rae: There’s quite a long his­to­ry now of clin­i­cal research, med­ical research, which has tried to engage patients, and some­times it’s the oth­er way, where patients have demand­ed that the clin­i­cians, or the research pro­grammes, are car­ried out in areas which per­haps have been neglect­ed or ser­vices aren’t pro­vid­ed, or drugs aren’t pro­vid­ed because there isn’t suf­fi­cient research. So peo­ple are say­ing: how can we help make sure that there is research. And that’s quite a long tra­di­tion now. And there’s a require­ment now that any­body who gets fund­ing to car­ry out med­ical research, or social care research, should involve patients in the process of design­ing the research, design­ing the research instru­ments, the method of data col­lec­tion and some­times in the dis­sem­i­na­tion of the results.

When a researcher now applies for fund­ing to do research, if it’s from the Med­ical Research Coun­cil or the Nation­al Insti­tute for Health and Social Care, then they would have to answer a ques­tion about how they had involved ser­vice users or patients.

Evans: Now we’re not talk­ing about guinea pigs here are we?

Rae: No, they’re involved in it as peo­ple with exper­tise of hav­ing had the con­di­tion. They’re not there as ‘We want to try out these drugs’, you know, a ran­domised con­trol tri­al or some­thing. They’re there in terms of iden­ti­fy­ing what research needs to be done, tak­ing part in the process of design­ing the research, tak­ing part per­haps in apply­ing for the fund­ing to car­ry out the research. Putting researchers in con­tact with patients like them­selves who have the con­di­tions that the researcher wants, or the fund­ing wants. So they’re a par­tic­i­pant in that sense, you know, they’re involved in the whole research process, they’re not the object of the research process.

Evans: Because, for exam­ple, in many con­di­tions a researcher might want to do some­thing about a par­tic­u­lar con­di­tion [Rae: yeah] and the patients may come back to him and say: well actu­al­ly, you need to be look­ing at such and such.

Rae: And it can also be about the way a ser­vice is deliv­ered; it’s not just about the clin­i­cal aspects of treat­ment. Often it’s about whether ser­vices are well con­nect­ed to each oth­er, whether they talk to each oth­er. Whether doc­tors talk to com­mu­ni­ty based doc­tors, or social work­ers, it’s about those com­mu­ni­ca­tions and the fact that a per­son with a chron­ic con­di­tion has to nego­ti­ate their way through a range of dif­fer­ent ser­vices, finan­cial ser­vices as well as health and social care services.

A Evans: Prism stands for Pre­dic­tive Risk Strat­i­fi­ca­tion Man­age­ment, it’s a tool that is going into GPs, will go to GP prac­tices, every sin­gle patient on the GP’s prac­tice list is giv­en a score, and that score is care­ful­ly cal­cu­lat­ed. It pulls togeth­er 37 dif­fer­ent pieces of infor­ma­tion about every sin­gle patient and it tells you the risk of being an emer­gency admis­sion into hos­pi­tal in the next twelve months. And the idea is to help all the health pro­fes­sions in the prac­tice to tar­get their care to stop you going into hos­pi­tal, as an emer­gency admis­sion. And we’re eval­u­at­ing how it actu­al­ly works in prac­tice: what dif­fer­ence does it make to GPs behav­iour? How are patients actu­al­ly feel­ing about the dif­fer­ent care? Are we get­ting bet­ter care? Is it chang­ing their expe­ri­ence of going into hos­pi­tal? It’s a fair­ly big, long term study which is going on at the moment in Swansea.

Toghill: I’m Mostyn Toghill and I’ve been a mem­ber of the SUCESS team since its incep­tion in 2008, been dia­bet­ic for fifty plus years, type 1 dia­bet­ic, mul­ti­plic­i­ty of oth­er com­pli­ca­tions asso­ci­at­ed with type 1 diabetes.

Although we don’t actu­al­ly direct­ly influ­ence pol­i­cy, that’s not part of our remit, we feel we’re hav­ing some influ­ence in the way things are being framed. And we’re help­ing the researchers to put a prop­er frame­work for the projects that they’re doing. I think a lot of what we do is to just point out the obvi­ous, because some­times you can be too close to a prob­lem and ‘cause you’re so close you can’t see it.

The big thing that we did, we actu­al­ly, before the change of the last elec­tion, where there was every HB, every local health board had to pub­lish its chron­ic con­di­tion man­age­ment poli­cies, and we as a group eval­u­at­ed those poli­cies with­in a frame­work that we were giv­en. But one thing that we did say with that, I mean that as a group I think that we gen­er­al­ly feel that what there is, is too much local­i­sa­tion of ser­vices, not enough uni­for­mi­ty across the coun­try. And that’s one thing that I would cer­tain­ly be want­i­ng to fight for and I think the group would sup­port me on that.

[Cuts to meeting]

Edge: What we’re talk­ing about is whether there are any par­tic­u­lar research items that you think we should, I mean how do we research podi­a­try, podi­a­try is just one of the things. If there are a lot of elder­ly peo­ple who have foot prob­lems liv­ing in an area and they haven’t got enough podi­a­trists. [Par­tic­i­pant 1: Yes.] That’s sim­ple, they need to prove… there’s no research there is there? Real­ly, it’s just a case of, you know, the health board, or who­ev­er it is, just needs to [Par­tic­i­pant 2: That’s right…] engage more podi­a­trists. Come to Pem­brokeshire, it’s a love­ly place to live…[voices talk­ing over each other]

Par­tic­i­pant 3: Jill, that wasn’t the point. The point was that podi­a­trists, where­as they used to be called ‘chi­ropodists’ and did every­thing, now will not cut toe­nails. I hate to keep rais­ing the sub­ject of toe­nails… [back­ground laughter]

Edge: I under­stand.

Par­tic­i­pant 3: And it’s a major prob­lem and there’s a…

Toghill: My podi­a­trist cuts my toe­nails, I’m going on Thurs­day. [Back­ground laugh­ter and talk]

Edge: I can under­stand that there is a prob­lem, I don’t under­stand where we… [Par­tic­i­pant 2: Where we’re going?] …yes. I mean…

Par­tic­i­pant 4: No, I don’t think it con­cerns us.

Edge: As a group per­haps we could lob­by the local health board, to engage more podiatrists.

[Cuts to interview]

Toghill: That per­fect­ly illus­trat­ed a point where, the point was made by one mem­ber of the group, that podi­a­trists no longer cut toe­nails. Well I have a podi­a­try appoint­ment on Thurs­day when I get back and the main object of that will be to cut my toe­nails. So instant­ly there’s a dif­fer­ence. I mean, I come from North West Wales, part of the Bet­si Cad­wal­adr Health Trust, and being a dia­bet­ic it obvi­ous­ly… I mean feet are a major issue with dia­bet­ics. So, yes, they do my nails and they look after my feet gen­er­al­ly for me, but then I can do that on a reg­u­lar basis, every six weeks or so, every six to eight weeks I go to a podi­a­try appoint­ment. One of my col­leagues on the group, who lives down in South Wales Val­leys, has real trou­ble get­ting to see a podi­a­trist and that mem­ber is also a dia­bet­ic so [sigh­ing] there’s no con­sis­ten­cy of ser­vices.  It’s very much a post­code… where you live deter­mines what you get.

Now to a cer­tain extent that will hap­pen with things like COPD, chron­ic obstruc­tive pul­monary dis­ease, as a results of things like pneu­mo­co­nio­sis and that sort of thing, with the min­ing and the heavy indus­try, but we get, you know we get sil­i­co­sis up in North Wales from the quar­ry­ing indus­try. So there’s a sim­i­lar­i­ty there. But, okay, you prob­a­bly wouldn’t get that in Aberys­t­wyth, but there’ll still be peo­ple there with COPD.

Evans: But that is a nation­al pol­i­cy isn’t it? I mean why have a head injuries unit in Swansea and in Cardiff, when you could have a mas­sive one serv­ing the whole of Wales, where you’d dou­ble the expertise.

Toghill: Well the argu­ment in that par­tic­u­lar case is that South and Mid Wales are served at Cardiff by the South Wales Neu­ro­log­i­cal Ser­vice and North Wales is served by Liv­er­pool… Man­ches­ter and Mersey­side. So they don’t seem to, they don’t per­ceive a need for it up there. But if those two decide to close their doors to North Wales patients, that would leave the North Wales patients, often ill and in great pain, hav­ing to trav­el by ambu­lance on very poor roads, prob­a­bly six or sev­en hour jour­ney because you can’t real­ly put your foot down with some­body with head injuries.

But the biggest prob­lem you’ve got obvi­ous­ly with every­thing these days is cost. We can’t have an acute hos­pi­tal in every town. You can’t have an acute unit in every town. So you have to sort of do the best you can with what you got. And just by sheer vol­ume of pop­u­la­tion, the bulk of ser­vices are going to be in South Wales, in the old coal­field areas basi­cal­ly, ‘cause that’s where two thirds of the pop­u­la­tion of Wales lives.

The dif­fi­cul­ties that peo­ple face are all, although the caus­es may be dif­fer­ent, the dif­fi­cul­ties that peo­ple come up with, with a chron­ic con­di­tion are quite com­mon right a… they’re quite com­mon. I came through this ini­tial­ly by the expert patients pro­gramme, many moons ago, which effec­tive­ly made you realise just how much com­mon ground there was between peo­ple with dif­fer­ent con­di­tions. That is where I think we should be focus­ing. You treat the spe­cif­ic con­di­tion by find­ing treat­ment for the con­di­tion, but the asso­ci­at­ed pain, frus­tra­tion, anger, dis­ap­point­ment, fear and all the rest of it that’s asso­ci­at­ed with long term ill­ness, they’re com­mon regard­less what the ill­ness, they’re com­mon ground across the board.

I mean obvi­ous­ly treat­ment for an insulin treat­ment isn’t going to help some­body with arthri­tis, like­wise treat­ment for arthri­tis isn’t going to help some­one who needs insulin. But they both suf­fer with poor cir­cu­la­tion, both suf­fer with painful joints and they both suf­fer with a list of com­mon symp­toms shall we say.

Evans: So what can you as a group do about this?

Toghill: Well as a group most research projects which involve lay mem­bers, shall we say, ser­vice users, involve two, three or four peo­ple on review­ing or advis­ing or what­ev­er, and they will take pos­si­bly a big­ger sam­ple for clin­i­cal test­ing. We’re cur­rent­ly up to 17 mem­bers. We’re the only group which has a total involve­ment in the research project as a group. And our par­tic­u­lar focus is chron­ic con­di­tions. Now there are oth­er groups out there which focus on par­tic­u­lar ill­ness­es; we try and take an overview and look at it all. We look at the ser­vice deliv­ery for chron­ic con­di­tions full stop, that is our brief.

A Evans: What SUCESS brings is added val­ue, because when a mem­ber of the SUCESS group goes to take part in research, gives us the patient per­spec­tive into a research study, they’re bring­ing their per­spec­tive and the per­spec­tive of all those patients behind them, who are mem­bers of SUCESS, who have that com­mon expe­ri­ence of liv­ing with chron­ic con­di­tions. And what SUCESS is doing is try­ing to con­tribute that exper­tise – ‘cause it is a real exper­tise – con­tribute that into devel­op­ing and under­tak­ing research. So that hope­ful­ly the research that you under­take is more rel­e­vant to patients and more appro­pri­ate to patients and there’s some evi­dence to say it may be the mes­sage will be tak­en on board more read­i­ly than if the research doesn’t involve patients.

Evans: What struck me today is that they are their own boss­es, it maybe under the aus­pices of Swansea Uni­ver­si­ty, [A Evans: Yep.] but it is their group not your group and I got a grilling for what I want­ed to do today.

A Evans: [laugh­ing] Yes they’re high­ly, they’re very, very moti­vat­ed peo­ple, very moti­vat­ed, very strong sense of their own iden­ti­ty, strong sense of what they have got to con­tribute. They all recog­nise that their expe­ri­ence of man­ag­ing their chron­ic con­di­tion is very rel­e­vant and while things may be obvi­ous to them, they realise that they’re not obvi­ous to peo­ple who don’t have that per­son­al expe­ri­ence, but they are very use­ful and very rel­e­vant if you are going to under­take research.  Yes they’re a very moti­vat­ed, dynam­ic and skilled group of people.

I sup­pose their moti­va­tion and that sense of iden­ti­ty is part­ly because I gave it to them, when the group was set up I always said very clear­ly from the begin­ning ‘you decide how we oper­ate’, because I thought then, I believed then, and I still do, that if they take charge and they have that own­er­ship, they’re going to be more moti­vat­ed and be more effective.

[Cuts to meeting]

Par­tic­i­pant 5: Are these patients select­ed randomly?

A Evans: That’s exact­ly what I was going to…

Par­tic­i­pant 6: Exact­ly the con­ver­sa­tion we had, they’re not select­ed ran­dom­ly, [Par­tic­i­pant 5: I’ll just be qui­et then] they were selected…

Edge: ‘Pur­po­sive­ly’, is the term…

Par­tic­i­pant 6: Pur­pose­ly, [back­ground talk­ing] not ran­dom­ly. [laugh­ter]

Edge: You decide the types of peo­ple you want to inter­view and then you pick for those cri­te­ria…[Par­tic­i­pant 6: yes]… So we want to inter­view peo­ple who are quite severe­ly ill, rather than not very ill, who are like­ly to have gone into hos­pi­tal rather than not.

[Cuts to interview]

Fly­nn: My name is John Fly­nn, I’d been healthy until about 25, 27 years ago. I had an acci­dent, had a punch but I hit my head on the floor, but I can’t remem­ber how long after that ini­tial con­cus­sion, I was walk­ing from my house to my father’s house and was com­ing up the street, the only thing I can remem­ber was like this lens in front of me, clos­ing down and the screen going off like a tele­vi­sion. Next minute I’m back in my own house, with the key in the front door and the light just opens up and I’m look­ing at my arm like this and not recog­nis­ing what’s hap­pen­ing and I was con­fused for about five to ten min­utes. Didn’t know what day it was, noth­ing. I was pan­ick­ing, so I went to the doc­tor and they diag­nosed epilep­sy. Because I had menin­gi­tis when I was a child, that was the ini­tial scar­ring of the tem­po­ral lobe, this con­cus­sion of hit­ting the floor that’s what…

Evans: What kicked it off.

Fly­nn: …kicked it off. The ini­tial begin­ning was scary and there was nobody that you could turn round to talk about it. The first doc­tor you get, he can either break you or make you.

Evans: Just explain that to me, how could a doc­tor break you?

Fly­nn: My first neu­rol­o­gist I came across, okay, he didn’t see me as a per­son, he saw me as a brain and that angered me. The spe­cial­ist nurse was more like a moth­er, I could talk to her, I could be open with her. Like, every­body I’ve spo­ken to, they send you home and you learn things off inter­net, hearsay, luck­i­ly the wife was work­ing in a com­mu­ni­ty-like thing and there was this self-help group for epilep­sy. I went to it, and I went on to forums, and I thought that was the fan­tas­tic… best thing that ever happened.

And the expert patients pro­gramme, you saw the per­spec­tive of everybody’s con­di­tion, you couldn’t believe how depres­sion came in, into every con­di­tion. And by talk­ing it out you felt more at ease. And the best thing I’ve ever done was come to a coun­sel­lor and to be hon­est [laugh­ing] after doing about two or three ses­sions the only thing that per­son was doing, like you are doing now: lis­ten­ing to me. Why didn’t you tape your­self, lis­ten to it and solve it? ‘cause you had a shock, but you had so much strength inside you, and don’t look at it that it’s you that’s talk­ing, look at as a per­son on the oth­er side and feel it in a dif­fer­ent way.

Because of my mem­o­ry, it’s like this morn­ing, going to my hotel I had a card, swipe card, to put into the door, and I’ve been car­ry­ing the wal­let with 221 on it. I’ve been doing it for a day, okay I felt stu­pid, the first thing I did was got my phone, put it into the notes, 221 on the notes, so that I could see it on the front of the phone when it came up. I don’t have to look at the phone now, ‘cause I can see the picture.

Evans: So you’re trans­lat­ing num­bers into pictures?

Fly­nn: Pic­tures. And that’s what hap­pened with the mem­o­ry class, exact­ly, in Liv­er­pool. With me, say I want to go shop­ping tomor­row morn­ing, put the bag in the front door so when I come down, ‘oh yeah’.

Evans: In the old days it used to be tie a knot in your handkerchief.

Fly­nn: That’s it.

Evans: Of course you’d have to remem­ber what the knot was there for, but that’s so obvious.

Fly­nn: Yes.

Evans: If you’re going to do some­thing tomor­row that you remem­ber now, make sure you see it first thing in the morning.

Fly­nn: But it’s like, in epilep­sy, the side of the brain that’s not been dam­aged, been scarred, is the recall, to me. I can’t store, I can’t bring it back. But they were telling you, say it, read it and look at it. So there’s three sides of the brain that can store it, so if one is dam­aged, there’s two bits again that can help you more. And by writ­ing it, is anoth­er thing again.

[Cuts to meeting]

Edge: Can we, I think we do need to move on. Maybe those of us who want to con­tribute at the end of the meeting…

[Cuts to interview]

Edge: I’m Jill Edge, with a con­di­tion, a chron­ic con­di­tion known as anky­los­ing spondyli­tis, which is a rheumat­ic con­di­tion of the spine.

Evans: You’ve been chair­ing this meet­ing of SUCESS today, was this a typ­i­cal meeting?

Edge: This wasn’t a typ­i­cal meet­ing actu­al­ly, because for the last, say three and a half years, we’ve been meet­ing reg­u­lar­ly as a group of peo­ple who all know each oth­er, but today we had some new mem­bers. So in that sense it was out of the ordi­nary and we had to make a pre­sen­ta­tion about our­selves to the new mem­bers. So, again it refreshed our mem­o­ries about what we’re doing and what we’re about.

Evans: Okay, tell me what you’re about.

Edge: Well, we’re a group of peo­ple, all with chron­ic con­di­tions, all vary­ing chron­ic con­di­tions, who’ve come togeth­er orig­i­nal­ly to help with Swansea University’s health and social care research, into the chron­ic con­di­tions man­age­ment poli­cies of all the local health boards in Wales. That’s what brought us togeth­er, we did some research, we worked with Angela Evans, who was the researcher and when we com­plet­ed that, we’d formed such a rela­tion­ship that we decid­ed that we would stick togeth­er, depend­ing on whether we got fund­ing, to actu­al­ly present our­selves as a group of peo­ple with chron­ic con­di­tions offer­ing our ser­vices to researchers for any fur­ther research.

Evans: And what sort of research do you get involved with?

Edge: Oh, it’s been quite var­ied. Obvi­ous­ly it’s… some of our group are involved in going to meet­ings organ­ised by the Welsh Gov­ern­ment. Those are research man­age­ment meet­ings, so they look into all sorts of dif­fer­ent kinds of research projects. We’ve looked at pieces of equip­ment, some of us have test­ed pieces of equip­ment that can be used in people’s homes to make them remain inde­pen­dent. These are peo­ple with chron­ic con­di­tions who can remain inde­pen­dent longer. We’ve looked at data and inter­views giv­en by peo­ple with chron­ic con­di­tions and tried to find themes to help researchers.

The amount of research we’ve done is quite var­ied actu­al­ly and it’s usu­al­ly very interesting.

Evans: What’s the most inter­est­ing thing you’ve been involved with?

Edge: I think it’s actu­al­ly read­ing through some of the inter­views. They’re so reveal­ing, they vary so much. Some peo­ple are very upbeat about their con­di­tion and are going to not let it get them down and get through it what­ev­er. Then there are peo­ple who, it was very inter­est­ing, you know, they’d been pre­scribed drugs and decid­ed on their own that they couldn’t tell their doc­tor that they weren’t going to take them and then had to go and con­fess it. Yeah, very, very inter­est­ing read­ing about oth­er people’s expe­ri­ences of hav­ing chron­ic con­di­tions actually.

Evans: How do you relate that to your own chron­ic condition?

Edge: Well, in my case, I’ve had my chron­ic con­di­tion for a long time. I think my con­di­tion start­ed when I was about eleven and [laughs] I sup­pose in a way I’ve sort of grown with it. So I have a fair­ly, kind of healthy respect for my con­di­tion, but I’m like one of the upbeat peo­ple. I don’t think it stops me real­ly doing any­thing that I want to do and, you know, obvi­ous­ly I do believe that you have to, you know, look after your­self. I think it’s impor­tant to keep your mind active and do as much as you can even if you have phys­i­cal prob­lems.  So, yeah, I def­i­nite­ly put myself in the upbeat category.

Evans: First­ly that means that you’re man­ag­ing your con­di­tion well, the fact that peo­ple are down­beat about it, the reports you read, does that tell you some­thing about how they’re managed?

Edge: Yes, obvi­ous­ly, it is much bet­ter if you can be pos­i­tive about things. If you see the glass half emp­ty, then it could be so easy to become depressed, so along with what­ev­er chron­ic con­di­tion, if that isn’t depres­sion, you could get depressed as well. Peo­ple tell me, you know, ‘Oh you’re great, you do this, you do that, you live with what you’ve got and you get on with it’, and meet­ings like this, I meet peo­ple who are far worse off than me, I only have one chron­ic con­di­tion. Many of the peo­ple in the group have more than one, some of them have sev­er­al, and they have to man­age those as well, and they’re pre­pared to come to meet­ings, and they’re pre­pared to try and do research to help oth­er peo­ple in the future.

Evans: That was Jill Edge, who chaired the meet­ing of SUCESS that I attend­ed and thanks to all of them for let­ting me do so. Now com­ing to the end of this edi­tion of Air­ing Pain, I just want to remind you of our usu­al words of cau­tion, that whilst we believe the infor­ma­tion and opin­ions on Air­ing Pain are accu­rate and sound, and they’re based on the best judge­ment avail­able, you should always con­sult your health pro­fes­sion­al on any mat­ter relat­ing to your health and well being. He or she is the only per­son who knows you and your cir­cum­stances and there­fore the appro­pri­ate action to take on your behalf.

Before John Fly­nn and Angela Evans bring this pro­gramme to a close, don’t for­get that you can down­load or obtain copies of all the pre­vi­ous edi­tions of Air­ing Pain from Pain Concern’s web­site and that’s at painconcern.org.uk. And from there you can also get the con­tact details to put a ques­tion to our pan­el of experts, or just make a com­ment about the pro­gramme via our blog, mes­sage­board, email, face­book, twit­ter or even pen and paper.

A Evans: I want to encour­age researchers to include ser­vice users and not to see it as some­thing which is threat­en­ing, not to see it as some­thing which they have to do just to tick a box, not to see it as some­thing which is a waste of time, but to come at it with an open mind and real­ly expe­ri­ence the ben­e­fits of includ­ing ser­vice users in their research.

Evans: Now to me, I would think it’s daft not to use them.

A Evans: It’s not always an easy process. It can take longer because you’re includ­ing more peo­ple in what you do; ser­vice users don’t always work at the same pace that you do; if they’re not well, they can’t, if they’re not used to that work­ing envi­ron­ment. You will have dif­fer­ent per­spec­tives and you may dis­agree about things as well as agree, so it’s not always easy, but the ben­e­fits are considerable.

Fly­nn: I would like to help oth­ers on the ground, to give the feed­back for them to go to the gov­ern­ment to help out. Nev­er mind where peo­ple come from, you still come across the pit­falls, they shouldn’t be there, but I come across peo­ple com­ing to the infor­ma­tion desk in hos­pi­tals and I’ve had a shock how many peo­ple open up about epilep­sy and nobody comes to the groups. I wish they’d give chil­dren from infan­cy [infor­ma­tion] about chron­ic con­di­tions, they wouldn’t be afraid of it and that would cut costs, by recog­nis­ing the con­di­tion in the first place. So that’s where you want to start, from the roots, not now, we’re too old, you want a fresh man’s eye, a child.

A Evans: I’m most proud of hear­ing researchers and mem­bers of health boards say how impressed they are when they are at a meet­ing at which a SUCESS mem­ber is at and how help­ful the con­tri­bu­tions that SUCESS mem­bers have giv­en has been to the research, how help­ful it is to hear the patient per­spec­tive and to see a patient in the room and to have their focus put onto a patient so they don’t for­get them. I think that’s what I’m most proud about.


Con­trib­u­tors:

  • Angela Evans, Research Offi­cer, Swansea University
  • David Rae, Col­lege of Human and Health Sci­ence, Swansea University
  • Mem­bers of SUCCESS, includ­ing Mostyn Toghill, John Fly­nn, Angela Evans & Jill Edge.

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