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Transcript – Programme 3: Children in Pain

The hid­den prob­lem of pain in chil­dren and young peo­ple, plus trib­utes to Pain Con­cern patron Claire Rayner

To lis­ten to this pro­gramme, please click here.

Chron­ic pain is as wide­spread in chil­dren and young peo­ple as in the pop­u­la­tion as a whole, but is prob­a­bly even less well under­stood. Jan Bar­ton and her son Sam, who grew up in con­stant pain, dis­cuss their strug­gle to get a prop­er diag­no­sis and to find effec­tive treat­ment, while, Dr Christi­na Lios­si explains how hyp­no­sis can be par­tic­u­lar­ly valu­able as an approach to man­ag­ing pain for chil­dren. Dr Aman­da Williams describes the psychologist’s role in help­ing patients man­age their pain and Dr Tonya Paler­mo explains how a psy­chol­o­gist can explain pain to young people.

We also pay trib­ute to the late Claire Rayn­er, inde­fati­ga­ble cam­paign­er for patients’ rights and patron of Pain Con­cern, who died Octo­ber 12, 2010, aged 79.

Issues cov­ered in this pro­gramme include: Chil­dren and young peo­ple, vas­cu­lar lesion, mis­un­der­stand­ing, mis­di­ag­no­sis, depres­sion, side-effects, hal­lu­ci­na­tion, fam­i­ly, psy­chol­o­gy, exer­cise, school, hyp­nother­a­py, com­mu­ni­ca­tion and leg pain.

Lionel Kel­loway: Hel­lo and wel­come to Air­ing Pain, a pro­gramme brought to you by Pain Con­cern, a UK char­i­ty that pro­vides infor­ma­tion and sup­port for those who live with pain. Pain con­cern was award­ed first prize in the 2009 Napp awards in chron­ic pain, and with addi­tion­al fund­ing from the Big Lottery’s funds awards for all pro­gramme and the Vol­un­tary Action Funds com­mu­ni­ty chest, this has enabled us to make these programmes.

I’m Lionel Kel­loway and in today’s programme:

Sam Bar­ton: I was told, this is how you’re going to be, you’re going to have to put up with this for the rest of your life and that was a destroy­ing moment for me.

Christi­na Lios­si: Chron­ic pain is actu­al­ly quite com­mon in chil­dren and ado­les­cents, with preva­lence rates that mim­ic adult preva­lence rates.

Tonya Paler­mo: The main fac­tors that I have found that pre­dict how good some­body will be is their ded­i­ca­tion and com­mit­ment to learn hyp­no­sis and how moti­vat­ed they are.

S Bar­ton: I got to the point where I even said, ‘Look, ampu­tate my leg. If it’s gonna help, just take the leg off.’ You know, I’d rather have lost the leg than continue.

Kel­loway: More on those sto­ries com­ing up. But first we at Pain Con­cern want to pay trib­ute to our patron, Claire Rayn­er, who died recent­ly. Many words have been said since her pass­ing and I think the best trib­ute we could pay is to hear the advice she gave to Air­ing Pain lis­ten­ers ear­li­er in the year. You’ll also hear the words of Pain Concern’s chair­man Heather Wal­lace and Mar­tin John­son, who chairs the Roy­al Col­lege of Gen­er­al Prac­ti­tion­ers pain man­age­ment group.

Claire Rayn­er: One sum­mer night I’d gone to bed ear­ly and was lying in bed stretched out stark­ers, read­ing, glass­es on the end of my nose, and my hus­band comes in, he stands beside the bed and he says, ‘Look at you,’ he said, ‘you’ve got arti­fi­cial shoul­ders, arti­fi­cial knees, you’ve got hear­ing aids, you’ve got a pace­mak­er, you’ve got glass­es – I don’t know whether to plug in or switch off!’

Heather Wal­lace: Claire Rayn­er was an inspi­ra­tion – she chal­lenged the view that noth­ing could be done about pain and suf­fer­ing. She also cham­pi­oned the rights of old­er peo­ple and the notion that pain was an inevitable part of aging. She her­self endured con­sid­er­able ill­ness and pain – she didn’t let her dis­abil­i­ties hold her back.

Rayn­er: This arm, it’s alright, but I’ve learnt not to try and lift myself up with it. I’ve learnt not to stretch with it – tricky because it’s my right arm, but there you go. And I shake hands when I meet peo­ple – I put up my left hand to say, ‘Hel­lo, it’s love­ly to see you.’ And they’re a bit star­tled at first and I say, ‘Sor­ry, the oth­er one’s a bum! [Laugh­ter] and there you go.

Just be cheer­ful about it. I’m deaf as a post. When I meet peo­ple I say, ‘You’ll have to speak up love, I’m a bit mut­ton.’ You know the term ‘Mutt and Jeff’? Good old cock­ney, you know, Mutt and Jeff, I’m a bit mutton.

You’ve got to be brave and upfront. Do remem­ber that once you’re an old grown up per­son, you don’t have to be polite and good any­more – you are allowed to be self­ish, if that’s what you think it is. I don’t think it’s self­ish, I think it’s com­mon sense to look after your­self. But you’re allowed to ask for what you want, you’re allowed to say, ‘Please help me.’ There’s no loss of face in that, I do it all the time.

Mar­tin John­son: Claire Rayn­er was the most ded­i­cat­ed peo­ples’ cham­pi­on that I’ve ever met. Even through­out her ill­ness­es over the last few years, she’s been so ded­i­cat­ed to doing work for patients. It was a priv­i­lege to work with her. I am a trustee of the Patients’ Asso­ci­a­tion, she’s spear­head­ed the Nation­al Patients’ Asso­ci­a­tion for many, many years, and I can’t think of any­body that has done more for patients’ rights than Claire.

Wal­lace: She want­ed peo­ple to learn about pain and about pain man­age­ment, so that they too could man­age their con­di­tion and get on with their lives and get the most out of their lives. She was an empow­er­ing woman and we will miss her great­ly, we will miss her voice, her ener­gy and her influ­ence on health policy.

Rayn­er: You deal with pain by… you have to be ratio­nal about it: is there any­thing you can do to get rid of it? Yes – do it. Is there any­thing you can do to get rid of it com­plete­ly? No – okay, bad luck, live with it. And that’s what you have to do, you learn, I learned, not to think about it, not to focus on it. When I find I have a pain that both­ers me more me one knee I will start flick­ing my fin­gers, even as I’m watch­ing tele­vi­sion, because that makes me shift focus of atten­tion from the achy bit to a bit that isn’t aching. And that works quite well. I don’t do it… if I do it in the cin­e­ma peo­ple might notice, but even there if some­thing hurts I might flex my toes, because that shifts my phys­i­cal atten­tion to anoth­er part of my body.

One of the best things you can do is get in touch with the spe­cif­ic [sup­port] group, they’re all there, use them, and then just get on with liv­ing your life. And if you’ve been dealt a bum hand, well you can turn it into some­thing good.

Kel­loway: The much missed, inspi­ra­tional Claire Raynor, who amongst many roles was patron of Pain Con­cern. I’m Lionel Kel­loway and you’re lis­ten­ing to Air­ing Pain

Sam Bar­ton: I was about eleven years old. I noticed I had two dis­tinct lumps on my calf. With­in a cou­ple of months of notic­ing this I start­ed get­ting pain symp­toms in my calf and with­in anoth­er cou­ple of months I was in absolute agony. After that we obvi­ous­ly went through the whole palaver of meet­ing doc­tors, sur­geons, try­ing to work out what it is, going for scans. The orig­i­nal deci­sion, I think, was they thought they were lipo­mas. They oper­at­ed and found that obvi­ous­ly what they were oper­at­ing on was not lipo­ma at all and the oper­a­tion sub­se­quent­ly had the effect of increas­ing the amount of pain I was in.

Jan Bar­ton: The lesion in Sam’s leg, which was an abnor­mal vas­cu­lar lesion, was putting pres­sure on the nerves in his leg and there was no cure at that time. And he was in agony when he was young, he described it as like some­one poured petrol down the back of my leg and set it on fire and I think that set the scene for the next ten years.

Kel­loway: That’s Jan Bar­ton and her son Sam, who’s sto­ry we’ll be fol­low­ing through­out the programme.

J Bar­ton: One of the biggest prob­lems, and often if you talk to peo­ple that suf­fer pain, chron­ic pain, is being believed in the first place. When Sam first became ill he was mis­di­ag­nosed, what Sam had wrong with his leg is very rare, so I can for­give peo­ple not get­ting it right, but I can’t for­give them not under­stand­ing how much pain he was in. And they said he had lipo­mas in his leg and these shouldn’t be giv­ing pain. And they… peo­ple would say things like, ‘Is he hap­py in school?’ That was a good one…

S Bar­ton: Yeah, I do remem­ber one par­tic­u­lar doc­tor actu­al­ly sug­gest­ing, ‘Do you per­haps think this is all in Sam’s head?’ And I found this all extreme­ly dis­tress­ing, due to the amount of pain I was in, that some­one was essen­tial­ly say­ing, ‘Is he hap­py in school? Per­haps, is he mak­ing this up?’, you know, and even if it was, for exam­ple, it doesn’t change the fact that it was still painful.

J Bar­ton: Once he had a prop­er diag­no­sis, once he saw the right peo­ple and they did the right scans and they diag­nosed what was wrong with him and they could see what was caus­ing the prob­lem, then, obvi­ous­ly then he was believed. But I think for many peo­ple that are in chron­ic pain not being believed is one of the hard­est things.

Kel­loway: Sam Barton’s sto­ry is of course unique to him, but there are issues and expe­ri­ences that affect all of us who live with pain. On Air­ing Pain we want to be led by you and sev­er­al lis­ten­ers have con­tact­ed us with com­ments and ques­tions that also have rel­e­vance to Sam’s sto­ry. In the last edi­tion we look as the com­plex sub­ject of neu­ro­path­ic pain and one lis­ten­er, who respond­ed to that pro­gramme on our Face­book page, the writer says, ‘I have neu­ro­path­ic pain, so the pro­gramme was espe­cial­ly use­ful’, then goes on to say, ‘I had two her­nia repairs between the ages of three and five and when I was 38 I devel­oped neu­ro­path­ic pain in my groin.’

Anoth­er cor­re­spon­dent writes, via our mes­sage-board, ‘My hus­band lives with chron­ic pain, and his doc­tors are not giv­ing him, or me , any psy­cho­log­i­cal help with deal­ing with the effects of the pain. When I sug­gest­ed to my hus­band that he might be depressed and could maybe ben­e­fit from some pain man­age­ment, he says there’s noth­ing they can do for him and he has his own ways of deal­ing with it. I now feel that we can’t dis­cuss any of this with­out get­ting upset of argu­ing, which makes his pain worse, and makes me feel worse.

A few months ago I went to see the coun­sel­lor at my local car­ers asso­ci­a­tion, but I felt I didn’t get on well with the coun­sel­lor and I don’t want to see her again. Where else can I get sup­port for myself and how else can I sup­port my husband?’

Well you’ll hear a lot about this sub­ject, not just in this pro­gramme, but in future edi­tions of Air­ing Pain. Address­ing this ques­tion­er today is Aman­da Williams, who is a con­sul­tant clin­i­cal psy­chol­o­gist in the pain man­age­ment cen­tre of the Nation­al Hos­pi­tal for Neu­rol­o­gy and Neu­ro­surgery in London.

Aman­da Williams: This is real­ly rather mov­ing and actu­al­ly very typ­i­cal of what hap­pens, that pain doesn’t just affect the per­son with pain, that is affects those who are close to them and care about them. It’s not uncom­mon for peo­ple with chron­ic pain to feel that they’re man­ag­ing well, because it sounds, when one sug­gests the pain clin­ic or help with pain man­age­ment, as if one is say­ing they’re cop­ing bad­ly, or they’re not, you know, in some ways they’re weak or they’re failing.

But pain is incred­i­bly dif­fi­cult to deal with and while her hus­band may be right, that there’s noth­ing that can be done and his own ways of deal­ing with this are the best, it’s pret­ty unlike­ly and there’s usu­al­ly some­thing to be learned from dis­cussing this with spe­cial­ists of pain clin­ics. And also very often with oth­er patients who are at pain clin­ics, because many of these things take place in group set­tings where peo­ple learn from one anoth­er and offer one anoth­er ways of under­stand­ing pain that then all can ben­e­fit from.

But prob­a­bly, if her hus­band did go to a pain clin­ic, then her involve­ment in help­ing him work on new ways of doing things, exper­i­ment­ing with dif­fer­ent ways of doing things, would be best, so she can actu­al­ly be a real­ly effec­tive asset for him in try­ing to do things dif­fer­ent­ly. And many pain clin­ics real­ly wel­come hus­bands and wives and oth­er, you know, close rela­tions who are keen to help and support.

J Bar­ton: Peo­ple under­es­ti­mate the effect it will have on a fam­i­ly group – it doesn’t just affect the per­son that’s in chron­ic pain, it affects the sib­lings, it affects the par­ents… When Sam was first on the med­ica­tion and he was about 13, when we’d come back from Lon­don and been told, ‘Well there you go guys – he’s on the meds, off you go, get on with it.’ Yeah? Unfor­tu­nate­ly, the com­bi­na­tion of the drugs, we hadn’t realised that Sam was start­ing to hal­lu­ci­nate and see things.

So it all came to a head one morn­ing when Sam and his lit­tle broth­er were sit­ting upstairs in bed and Sam was see­ing things and he start­ed scream­ing and he was hav­ing florid visu­al hal­lu­ci­na­tions. And unfor­tu­nate­ly his lit­tle broth­er was sit­ting next to him when it hap­pened and he was quite trau­ma­tised by this and the fact that then Sam was see­ing things walk­ing round the house. We’d go to sit on a chair and Sam would say, ‘Don’t sit there because, there’s… Marvin’s there.’ The way Sam dealt with it was that he invent­ed a good­ie [S Bar­ton: Yeah.] called Mar­vin. Now Mar­vin would chase away all the bad shad­ow peo­ple, weren’t they shad­ow people?

S Bar­ton: Yeah, I mean at the age of 13, you know, when you start see­ing shad­ows step out of the wall… I mean it was real­ly bizarre, it was real­ly strange and it was real­ly scary at the same time.

J Bar­ton: How­ev­er his lit­tle broth­er had even less insight as he was only ten and was absolute­ly trau­ma­tised by all of this and as an exam­ple of how it then affect­ed the fam­i­ly group, for six months after­wards he would not go any­where in the house on his own. So we had some help from an organ­i­sa­tion in Swansea called the Tris­tan Lewis Trust and they had a play ther­a­pist who start­ed to see Robert and did the trick – after a while he did recov­er from the expe­ri­ence, but it took a good six months before he got over that at the age of ten.

Kel­loway: This is Air­ing Pain, with me Lionel Kel­loway. Anoth­er ques­tion­er to our mes­sage-board has touched on issues raised in this pro­gramme. But before we con­tin­ue, please bear in mind that whilst we believe the infor­ma­tion and opin­ions on Air­ing Pain are accu­rate, based on the best judge­ments avail­able, you should always con­sult your health pro­fes­sion­al on any mat­ter relat­ing to your health and well­be­ing. He or she is the only per­son who knows you and your cir­cum­stances and there­fore the appro­pri­ate action to take on your behalf.

Now back to that ques­tion: ‘How can a psy­chol­o­gist help with pain man­age­ment?’ Address­ing your ques­tions today is Con­sul­tant Clin­i­cal Psy­chol­o­gist Aman­da Williams.

Williams: Well pain is very stress­ful, as sev­er­al oth­ers have point­ed out on your pro­gramme, and there are many prob­lems that hav­ing pain caus­es some­body. So psy­chol­o­gists try to help address those. Some of the prob­lems are out­side the individual’s con­trol, but there are still ways that peo­ple can pro­tect them­selves from things that are out­side their con­trol. But oth­ers have pos­si­bil­i­ties of con­trol, for instance, we all have habits in the way we think and the way we react emo­tion­al­ly to prob­lems and we char­ac­ter­is­ti­cal­ly do things in cer­tain ways and that feels nor­mal and usu­al and sen­si­ble and so on. And that works for most prob­lems in our lives, and then cer­tain prob­lems, like pain, can chal­lenge those because they don’t give way as prob­lems to those kind of solu­tions that we’re used to using.

So a psy­chol­o­gist will try to help look at things from a broad­er per­spec­tive and dis­cuss dif­fer­ent ways of think­ing about prob­lems, dif­fer­ent ways of react­ing emo­tion­al­ly to them and dif­fer­ent ways of han­dling them. Then those pos­si­ble solu­tions are tried out and dis­cussed. A psy­chol­o­gist real­ly tries to work with peo­ple in a joint way, so it’s a shared jour­ney of explo­ration, find­ing out more about what works for the per­son with the prob­lems in their par­tic­u­lar cir­cum­stances. There aren’t any answers that work for every­body but psy­chol­o­gy is enough of a sci­ence that there’s some things that we can be fair­ly sure about.

Kel­loway: Aman­da Williams there.

So, bear­ing in mind Sam’s sto­ry, what is the psychologist’s role in a case involv­ing a child or ado­les­cent? Tonya Paler­mo is a pae­di­atric psy­chol­o­gist and asso­ciate pro­fes­sor at Ore­gon Health and Sci­ence Uni­ver­si­ty in America.

Tonya Paler­mo: Chron­ic pain is actu­al­ly quite com­mon in chil­dren and ado­les­cents and in large com­mu­ni­ty-based stud­ies there have been find­ings of 20–40 per cent of youth hav­ing some pain that per­sists over a three-month peri­od. And among those youth those that have severe and dis­abling pain is approx­i­mate­ly 5–10 per cent, which is almost exact­ly the same as the adult population.

Typ­i­cal­ly when we see youths for psy­cho­log­i­cal treat­ment for chron­ic pain we devel­op some shared goals and those are around func­tion­al goals for the child. These may involve aspects of phys­i­cal activ­i­ties that they are no longer able to per­form that they want to get back to, such as being on the bas­ket­ball team again; these may be very prac­ti­cal, rou­tine life activ­i­ties, such as par­tic­i­pat­ing in chores around the house again; or these may be manda­to­ry type goals, such as requir­ing some type of school atten­dance or participation.

And so we typ­i­cal­ly encour­age youths to come up with a vari­ety of goals that are beyond pain relief, because the focus on only pain relief can some­times be counter ther­a­peu­tic, because youth may not see the val­ue in engag­ing in a vari­ety of oth­er activ­i­ties, but want to focus instead just on con­trol­ling their pain – and we know that those approach­es don’t work as well.

S Bar­ton: My goals were basi­cal­ly, I just want­ed to work, want­ed to get a job, want­ed to be nor­mal, go out drink­ing, doing every­thing that, you know, a nor­mal 16, 17 year old would be doing. But it was almost liv­ing a sort of dou­ble life in a way, because when I was in a sort of remis­sion, you know, when the leg wasn’t hurt­ing too bad, maybe for a cou­ple of weeks, I’d be able to go out, go down the pub, hang out with my friends and then I would end up in absolute agony again, so I would kind of dis­ap­pear off the scene com­plete­ly, because I wouldn’t obvi­ous­ly be able to go out, wouldn’t be able to do what I want­ed to do.

And I’d find it very dif­fi­cult with work – because I was des­per­ate to work – and I find it very dif­fi­cult with employ­ers, you know, to explain to them, ‘Look, you know, this is why I’ve been off work today.’ They knew, obvi­ous­ly, I had a prob­lem, they would try and do their best to help me out and pro­vide me with some work and I just got sick of let­ting them down all the time real­ly, so I think that was the point where I decid­ed that it would prob­a­bly be best to apply for dis­abil­i­ty liv­ing allowance and income support.

Paler­mo: The way we typ­i­cal­ly explain to chil­dren and ado­les­cents that activ­i­ty par­tic­i­pa­tion may lead to pain reduc­tion is that the tem­po­ral order­ing of that, is that once you par­tic­i­pate in activ­i­ties, that that alone, both the rou­tine involve­ment of that as well as show­ing your­self and feel­ing more con­fi­dent in your abil­i­ties to do impor­tant things in your life, that that often leads to pain reduc­tion. And so some­times we don’t need to think about a spe­cif­ic strat­e­gy to con­trol pain, but we just need to instead focus on how to get back into impor­tant life activ­i­ties and that that involve­ment will often lead to a decrease in pain.

Kel­loway: Pae­di­atric Psy­chol­o­gist Tonya Paler­mo and Sam Bar­ton. I’m Lionel Kel­loway and you’re lis­ten­ing to Air­ing Pain.

One of the routes offered to Sam Bar­ton was to under­go a three week res­i­den­tial pain man­age­ment pro­gramme at the Bath Pain Clin­ic. His moth­er was also encour­aged to attend with him, but how did her rather cyn­i­cal and bat­tle-worn teenag­er and his mum, get on?

S Bar­ton: They did all this stuff, like, you know, guid­ed med­i­ta­tion, which is just a load of… I don’t real­ly [laugh] believe in that kind of stuff, if you see what I mean. But it was very help­ful being in a sit­u­a­tion with peo­ple, obvi­ous­ly who are expe­ri­enc­ing the expe­ri­ences that I was going through at the time, you know, and it was a… sort of lift­ed me up a bit, you know?

They were try­ing to work us into a bet­ter rou­tine, obvi­ous­ly. I was very sleep invert­ed, so I was not sleep­ing in the night, sleep­ing through the day, you know, which was the same as every­body else who was there, real­ly, you know. And it was just a case of mak­ing us get up in the morn­ing, mak­ing us do some exer­cise, whether it was painful or not, you know.

J Bar­ton: I think being on the res­i­den­tial course in the pain clin­ic at Bath with Sam was real­ly help­ful, because I was able to speak to oth­er par­ents in a sim­i­lar sit­u­a­tion. I would be able (to be) taught ways to man­age this. When you do a course like that they ask you what is your aim from the course and mine was just to try and find a way to help Samuel, I think that was my goal. I didn’t actu­al­ly believe when I went on it that we could, so that’s anoth­er thing I guess I gained from it, that we did find ways of help­ing him and it’s sim­ply being with oth­er peo­ple and work­ing togeth­er and being taught ways to man­age it – it was very helpful.

Kel­loway: Jan and Sam Bar­ton there. And Air­ing Pain will be vis­it­ing the Bath Pain Clin­ic in a future edi­tion. Anoth­er tool in the psychologist’s tool­box is hyp­no­sis. And there is evi­dence to show that it can be par­tic­u­lar­ly effec­tive for chil­dren under­go­ing painful med­ical pro­ce­dures. Research into its effi­ca­cy is being car­ried out by Christi­na Lios­si, who is a senior lec­tur­er in health psy­chol­o­gy at the Uni­ver­si­ty of South­hamp­ton and a clin­i­cal psy­chol­o­gist at Great Ormond Street’s chron­ic pain clinic.

Christi­na Lios­si: One of the ben­e­fits of hyp­no­sis is that chil­dren can learn hyp­no­sis very eas­i­ly, it doesn’t have any side effects and also tech­niques such as hyp­no­sis can be gen­er­alised to oth­er dis­tress­ing sit­u­a­tions the chil­dren find them­selves into. So, for exam­ple, when I was work­ing in oncol­o­gy we were teach­ing chil­dren to use hyp­no­sis for pain man­age­ment for lum­ber punc­tures or veni punc­tures. But then they could use exact­ly the same skills for nau­sea and vom­it­ing man­age­ment, for insom­nia, for oth­er dis­tress­ing symp­toms that they had because of cancer.

I am using hyp­no­sis for my chron­ic pain patients and I have found it equal­ly effec­tive as in the acute pain set­ting. Although, I have to say that there are dif­fer­ences between acute and chron­ic pain, so it’s not exact­ly the same situation.

The results have been very encour­ag­ing and very good in the adult pop­u­la­tion as well. For exam­ple, it has been used for woman with breast can­cer that they have to under­go biop­sies, for peo­ple that have to under­go bone mar­row trans­plan­ta­tion. But there is a small per­cent­age of peo­ple that have low hyp­not­ic abil­i­ty, but even these peo­ple, even if they don’t get the full ben­e­fit of hyp­no­sis they get some ben­e­fit from the relax­ation that accom­pa­nies hypnosis.

I think, that one of the things that real­ly has stuck into my mind, was a five-year-old boy that I had taught him hyp­no­sis, he had his lum­bar punc­ture with­out any oth­er med­ica­tion just with local anaes­thet­ic plus hyp­no­sis, he was very hap­py about it. And then when I went back to the hos­pi­tal a week lat­er, I found out, that he him­self had taught anoth­er lit­tle boy how to use hyp­no­sis, because he was going to go for a pro­ce­dure this oth­er boy and was very scared. So he had taught him how to hyp­no­tise him­self – and the oth­er boy went in to the treat­ment room, had the pro­ce­dure and was very calm and very con­fi­dent and there were no problems.

And, of course, you know, the par­ents were talk­ing about it, and they said, ‘What’s going on? Who is this lit­tle boy who is teach­ing my son hyp­no­sis?’ That shows that hyp­no­sis is some­thing that can be ben­e­fi­cial and also eas­i­ly taught even by a five-year-old to anoth­er seven-year-old.

Kel­loway: That’s Christi­na Lios­si. You are lis­ten­ing to Air­ing Pain with me, Lionel Kel­loway. So, back to Sam Barton’s sto­ry, here’s his mum, Jan:

J Bar­ton: We had a few quite unpleas­ant years between about the age of eigh­teen and twen­ty one when it was dif­fi­cult to for him to work, he was in pain again. So he had two options he was fac­ing: do some­thing or live like this for the rest of your life.

Doing some­thing was risky, there was a big risk of mak­ing things even worse, if that were pos­si­ble. So he was referred for what they call, a treat­ment called… which is a scle­ros­ing treat­ment, which is a bit like what they do to vari­cose veins but a bit more sophis­ti­cat­ed than that. And they inject the lesion, the vas­cu­lar lesion, with the flu­id with the idea to shrink it, and that’s what they did.

The first treat­ment went okay, the sec­ond treat­ment was okay at the time, but he came back, and he was… and then blue-light­ed into Mor­ris­ton [Hos­pi­tal, Swansea] a day lat­er and he was in absolute agony. I have nev­er ever got over that, ever got over… watch­ing… lis­ten­ing to that. Will nev­er get over, watch­ing him scream­ing in agony, ‘Please kill me.’ I don’t think I’ll ever get over that.

S Bar­ton: Punch­ing myself on my head, try­ing to knock myself out.

J Bar­ton: Oh, I didn’t know what you were doing [laugh­ter]. It was just one of the most appalling things I’ve ever wit­nessed. [S Bar­ton: It was real­ly, real­ly painful.] And that’s after work­ing for sev­en years in inten­sive care.

S Bar­ton: So it was one of those moments where you’re in so much pain when you, lit­er­al­ly, it’s like you’ve switched off, you go inside your own head. And it’s like noth­ing out­side your­self is hap­pen­ing because of what’s hap­pen­ing to you at the time. I have nev­er ever felt any­thing like that before in my life.

J Bar­ton: What did you say? It felt like some­body had stuck a blender in his leg, back of his leg and turned it on.

Paler­mo: Ado­les­cence is a time of change in many areas for youth – both their cog­ni­tive devel­op­ment, their phys­i­cal devel­op­ment and social rela­tion­ships change dra­mat­i­cal­ly. This can have impact on how par­ents and youth inter­act. And when you put that in the con­text of any chron­ic health con­di­tion, such as hav­ing chron­ic pain, there may be dif­fi­cul­ties in how youth and their par­ents com­mu­ni­cate about the child’s pain and their man­age­ment deci­sions. We have seen this in ways that we try to encour­age par­ents to con­sid­er the lev­el of deci­sion-mak­ing pow­er they give the ado­les­cent. Because often this is very moti­vat­ing when a young per­son is giv­en their appro­pri­ate deci­sion mak­ing capac­i­ty again instead of hav­ing the par­ents make deci­sions for them.

J Bar­ton: We went to Lon­don and the sur­geon we saw was excel­lent and said that he thought it prob­a­bly wouldn’t make things worse – there was a 10% chance that he might have some improve­ment and there was a chance that he could have a lot, a big improve­ment. And Sam, he decid­ed to take the risk, didn’t you Sam?

S Bar­ton: If I didn’t have the surgery and I’d con­tin­ued down the road that I was going, to be hon­est, I was prob­a­bly going to end up drink­ing myself to death or doing myself a nasty, if you see what I mean, you know? And I got to the point where I even said, ‘Look, ampu­tate the leg, if it’s gonna help, just take the leg off’, you know?

J Bar­ton: We actu­al­ly asked the surgeon…

S Bar­ton: I real­ly got…I didn’t care, you know, I’d rather have lost the leg than con­tin­ue. After years of being told, you know, ‘Well one day this is going to get bet­ter. We’ll find some­thing to do about this.’ I was told, ‘This is it now – this is how you’re going to be, you’re going to have to put up with this for the rest of your life.’ And that was a destroy­ing moment for me.

Kel­loway: A destroy­ing moment indeed. And Sam’s deci­sion to under­go life threat­en­ing surgery?

J Bar­ton: It all went extreme­ly well. They removed part of the lesion, he didn’t bleed to death on the table. Which was always a plus, wasn’t it Sam?

S Bar­ton: Yeah, yeah…

J Bar­ton: And they were able to move some cysts inside the nerve sheath in his leg.

S Bar­ton: And it doesn’t hurt, I have no pain, which is mirac­u­lous real­ly. I am com­plete­ly pain free, you know, I was not even expect­ing that before I went in for the surgery, you know. If any­thing, I didn’t go into the surgery con­fi­dent that I was going to be bet­ter after­wards. I thought I it might be a bit bet­ter, maybe it might be the same, but it’s worth try­ing it and this is bril­liant, yeah – this is fan­tas­tic. Before I would not be able to walk, maybe even like a quar­ter of a mile with­out end­ing up in absolute agony for days and days on end and yes­ter­day I walked for about three and a half miles with the dog [laugh], and obvi­ous­ly I’ve got a job and I’m going to work lat­er on.

I can live a nor­mal life with­out actu­al­ly try­ing to live a nor­mal life. I can go moun­tain bik­ing, I can go surf­ing, I can start skat­ing again, which means a huge amount to me, I mean it’s essen­tial­ly saved my life, you know, in more than one way.

Kel­loway: Our thanks to Sam and Jan Bar­ton for shar­ing that very mov­ing sto­ry with us.

And don’t for­get that Air­ing Pain is here to help you, so if you’d like to put a ques­tion to our pan­el of experts, or just make a com­ment about the pro­gramme then please do via our blog, mes­sage board, email, Face­book, Twitter.

All this infor­ma­tion is on our web­site, www.painconcern.org.uk. It’s a one stop resource to get fur­ther infor­ma­tion about this pro­gramme, includ­ing a glos­sary of med­ical terms used, and to down­load this and pre­vi­ous edi­tions of Air­ing Pain along with a host of infor­ma­tion on how to man­age your pain.

In the next pro­gramme we will be explor­ing the sub­ject of nutri­tion, weight con­trol for those with low­er back pain and mind­ful­ness. But for now, I’ll leave you with some per­son­al advice from Jan and Sam Barton.

J Bar­ton: A lot of peo­ple find it par­tic­u­lar­ly help­ful to try and make con­tact with oth­er peo­ple in a sim­i­lar sit­u­a­tion, via organ­i­sa­tions like Con­tact a Fam­i­ly or the var­i­ous pain char­i­ties. I think it’s quite use­ful to be able to con­tact and talk to oth­er peo­ple and find what is out there in the way of advice.

Be care­ful what you read on the inter­net – don’t believe every­thing you read online. How­ev­er, there is use­ful infor­ma­tion out there, and there is good, reli­able, safe infor­ma­tion out there, but do be care­ful that you don’t believe in every­thing you read on the inter­net – just look for the help that’s out there and don’t give up.

S Bar­ton: I would say to peo­ple that, no mat­ter how hard it gets, just to keep going, keep push­ing on and don’t let it get you too down. No mat­ter how hard it gets, and you will have those moments, where you hit rock bot­tom and you think noth­ing can ever go right, you know, and that this is it, game over. No mat­ter how hard it gets, every­thing you do in your life, every­thing you say, every­one you meet – it defines who you are. It builds the char­ac­ter that you become and going through some­thing as hard as I have been through, it has real­ly turned me into quite a good per­son, you know. I’ve got a fair­ly strong char­ac­ter, I’ve got a fair­ly strong dri­ve to con­tin­ue my life and even if I was still in pain, still every­thing I was doing would still be defin­ing who I am. So don’t give up and just remem­ber that you are a stronger per­son than most peo­ple would be.


Con­trib­u­tors:

  • Heather Wal­lace, Chair of Pain Concern
  • Dr Mar­tin John­son, Chair, the Roy­al Col­lege of Gen­er­al Prac­ti­tion­ers’ pain man­age­ment group
  • Aman­da Williams, Con­sul­tant Clin­i­cal Psy­chol­o­gist, Uni­ver­si­ty Col­lege London
  • Claire Rayn­er, Patron of Pain Concern
  • Sam Bar­ton
  • Jan Bar­ton
  • Dr Tonya Paler­mo, Pae­di­atric Psy­chol­o­gist and Asso­ciate Pro­fes­sor, Ore­gon Health and Sci­ence University
  • Dr Christi­na Lios­si, Senior Lec­tur­er in Health Psy­chol­o­gy, Uni­ver­si­ty of Southamp­ton and Clin­i­cal Psy­chol­o­gist, Great Ormond Street chron­ic pain clinic.

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