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Transcript – Programme 10: Young People in Pain

Patients and health pro­fes­sion­als at a res­i­den­tial pain man­age­ment pro­gramme in Bath talk about the pain man­age­ment needs of younger peo­ple and the aims of the programme

To lis­ten to this pro­gramme, please click here.

Paul Evans vis­its the Cen­tre for Pain Ser­vices at the Roy­al Nation­al Hos­pi­tal for Rheumat­ic Dis­eases at Bath to find out about the pain man­age­ment pro­gramme there. Clin­i­cal Direc­tor Dr Lance McCrack­en explains how the pro­gramme helps peo­ple get on with their lives and we meet the patient group to learn about their expe­ri­ences in liv­ing with pain, what brought them to Bath and the things they’ve learned dur­ing their time on the pro­gramme. We also hear about how the team at Bath pro­vide spe­cif­ic ser­vices to younger peo­ple and how pain affects their fam­i­lies and sleep­ing habits.

Issues cov­ered in this pro­gramme include: Young peo­ple, res­i­den­tial pro­grammes, rheumat­ic pain, fam­i­ly, mobil­i­ty, pac­ing, phys­io­ther­a­py, psy­chol­o­gy, school, occu­pa­tion­al ther­a­py, social life, stress, drugs, side effects, hal­lu­ci­na­tion, sup­port for par­ents and sleep pattern.

Paul Evans: Hel­lo and wel­come to Air­ing Pain, a pro­gramme brought to you by Pain Con­cern, a UK char­i­ty that pro­vides infor­ma­tion and sup­port for those of us who live with pain. Pain Con­cern was award­ed First Prize in the 2009 NAP awards in Chron­ic Pain and with addi­tion­al fund­ing from the Big Lot­tery Fund’s Awards for All pro­gramme and a vol­un­tary action fund­ed com­mu­ni­ty chest, this has enabled us to make these programmes.

San­dra: I’m San­dra. I’m from Bris­tol, and I’ve come here to try and see if they can help me with my pain.

Anne: I’m Anne. I’m from South-West Wales, I’ve been in pain since 1998 and I just want to get some mobil­i­ty back, as well as get­ting rid of some of the pain.

Jen­ny: I’m Jen­ny. I’ve been in chron­ic pain since 2001 and I’m here to get some tools and a way I can man­age my pain, and mobil­i­ty and strength in my mus­cles and things like that.

Alan: I’m Alan. I’ve come down from Scot­land to try and get my pain back under con­trol, as recent­ly it has escaped.

Jan Bar­ton: Sam even­tu­al­ly went to a project in Bath for ado­les­cents in chron­ic pain. It was an excel­lent project. They said: ‘we won’t cure your pain, but we can teach you how to deal with it.’

Evans: I’m Paul Evans and each fort­night on Air­ing Pain we look at the top­ics that affect those of us who live with chron­ic pain: the cop­ing mech­a­nisms, med­ical inter­ven­tions and ther­a­pies that might help us to regain con­trol of our lives. But first, our usu­al word of cau­tion, that whilst we believe the infor­ma­tion and opin­ions on Air­ing Pain are accu­rate and sound, 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.

Today we’re focus­ing on the Cen­tre for Pain Ser­vices at the Roy­al Nation­al Hos­pi­tal for Rheumat­ic Dis­eases at Bath. It’s a nation­al, high­ly spe­cial­ist ser­vice for treat­ing young peo­ple and adults who have been to oth­er pain ser­vices but have con­tin­u­ing prob­lems. The cours­es are usu­al­ly run on a res­i­den­tial basis and its clin­i­cal direc­tor is con­sul­tant clin­i­cal psy­chol­o­gist Dr Lance McCracken.

Dr Lance McCrack­en: Most of the cas­es we see defy easy cat­e­go­riza­tion, in oth­er words, they – a lot of cas­es have some­what com­plex diag­nos­tic sit­u­a­tions, they’re hav­ing a hard time get­ting a sin­gle con­sen­su­al­ly agreed-upon diag­no­sis. Hav­ing said that, we see a lot of peo­ple with gen­er­al­ized pain prob­lems, not just affect­ing one part of their body – it may have start­ed in one part of their body, but then it affects oth­er parts. Peo­ple who’ve had back injuries and who’ve had surgery for that and who haven’t done well. Patients with gen­er­al­ized mus­cu­lar skele­tal pain or with fibromyal­gia, post-lum­bar surgery pain, are prob­a­bly some of our biggest groups.

A pret­ty decent frac­tion of peo­ple we see are patients who have had lit­tle obvi­ous pre­cip­i­tat­ing cir­cum­stances, like they just sort of… pain came on with­out a par­tic­u­lar acci­dent or ill­ness and so that’s maybe 20% or a fifth of the peo­ple we see have just chron­ic, very dis­abling pain but with­out a clear reason.

A dif­fi­cult pain prob­lem can hap­pen to almost any­body. The main cri­te­ria for us is that if pain is hav­ing a very large impact on people’s lives, social­ly, and with their phys­i­cal activ­i­ties, and emo­tion­al­ly, with their sleep pat­terns, so if the impact is large or sig­nif­i­cant, and if oth­er treat­ment ser­vices haven’t sig­nif­i­cant­ly helped, if peo­ple are still suf­fer­ing. The largest patient group that we decide not to treat are peo­ple who are doing pret­ty well, mean­ing they have chron­ic pain but their func­tion­ing is ok.

Alan: I knew about this place and I sus­pect all the oth­ers that have researched pain and the var­i­ous things that can be used to treat it and so on, knew of the exis­tence of Bath. But I didn’t actu­al­ly choose to come here – that was a refer­ral from my pain con­sul­tant, who said that this was a dif­fer­ent approach and one that should be con­sid­ered along­side all the stan­dard phys­io­ther­a­py and all the stan­dard drugs, that we’ve all gone through one way or another.

Evans: You’ve all come from areas – South-West Wales, Bris­tol – not so far – Birm­ing­ham, Scot­land… Was there noth­ing like this in your local area?

Jen­ny: Noth­ing at all. They do ‘to be kind to your­self’ kind of cours­es where they look at pac­ing and relax­ation, but the dif­fer­ence with this kind of course is, you know you’re not going to ease your pain. In fact, when you come here, your pain may even get a lit­tle bit worse, because obvi­ous­ly you’re doing more what is called ‘body con­di­tion­ing’ here. It’s not so much physio, it’s choos­ing exer­cis­es towards the val­ues that you want in your life. And there’s noth­ing like that in Birm­ing­ham, or any­where near­er, so that’s why the pain spe­cial­ist did actu­al­ly say that this is the best and only course in the UK that actu­al­ly does such a programme.

Alan: One thing I will say just to stand up for Scot­land is there is a sim­i­lar course up there, but it’s done on a day release basis down in Glas­gow and that just wasn’t the right atti­tude for me. I want­ed to get it all done in one block.

Anne: I could say about my area in Wales. They have got Bron­llys which is a res­i­den­tial course, but they don’t have facil­i­ties for peo­ple that need the spe­cial beds and maybe some nurs­ing input, so they… I was referred to Bron­llys, but they referred me on to here.

McCrack­en: Peo­ple come here out of des­per­a­tion, a lot of times. Peo­ple cer­tain­ly come with the hope or wish for a cure, that’s for sure. Some peo­ple come with a con­fused or con­fusing set of goals, because they, sort of… on the one hand they under­stand that we don’t do a cure here and their doc­tor tells them that, yet on the oth­er hand, they still want it. And we’re quite straight from the begin­ning: we don’t offer a cure, if what we mean by that is that the pain will go away. Patients have great results, but they don’t get cures. Not for the most part.

Evans: You say, ‘great results’ – what is a ‘great result’?

McCrack­en: I mean, in gen­er­al, a great result would be… patients want to do things, peo­ple want to do things in their life and since their pain start­ed, they’re not doing those things any­more – they’re spend­ing their time try­ing to deal with the pain, instead of doing these oth­er things. For us, a great result is mak­ing that shift back, away from wrestling with the pain and see­ing anoth­er doc­tor, seek­ing a cure, spend­ing all your time on that and back on to the kind of fam­i­ly life and social life, and work life and phys­i­cal activ­i­ties and the kind of com­plete life activ­i­ties that they actu­al­ly want to do, yeah, back on their goals and desires, not wrestling with the problem.

Evans: Dr Lance McCrack­en. Some res­i­den­tial cours­es at Bath Cen­tre for Pain Ser­vices last for three weeks, but for patients like San­dra, Anne, Jen­ny, Alan, who are all less able-bod­ied, the cours­es run for four weeks. And they stay with­in the hos­pi­tal, rather than the res­i­den­tial flats. I spoke to them at the start of Week 3.

Alan: First of all, they get to know us. They have a stan­dard­i­s­a­tion to find out where we are to begin with, both in terms of mea­sure­ments, attrib­ut­es, the way we approach pain, so they know where we are. I pre­sume, at the end of the 4 weeks, they’ll do that again and see what the dif­fer­ence has been. And then we have a num­ber of strands through­out the 4 weeks: one look­ing at body con­di­tion­ing, which is look­ing at how we adapt to phys­io­ther­a­py, in our… because when you’re in a wheel­chair, you can still do a stand­ing exer­cise, which is a dif­fer­ent approach than most phys­io­ther­a­pists get. That’s one strand. And then we have the psy­chol­o­gy strand…

Anne: We’ve got three psy­chol­o­gists, actu­al­ly, cov­er­ing the course.

Evans: And what do they do with you?

Anne: ‘Mind­ful­ness’, it’s called.

Jen­ny: You can’t change your thoughts, but it’s look­ing at how you can notice them, but still try and give your­self options. The pain’s always going to be there, so it’s try­ing to man­age your life, so the pain’s there… instead of relax­ation, it’s not a relax­ation thing, it is more about being aware, isn’t it, of our thoughts?

Alan: Yeah, so you don’t go for­ward and back all the time, but you become aware of what’s hap­pen­ing now. You don’t analyse either, that is one of my big weaknesses.

Jen­ny: Yeah, I think it’s all of us.

Alan: But you just observe, you know, what’s going on.

Evans: One of the fre­quent ques­tions Pain Con­cern gets on its mes­sage board is: ‘What have psy­chol­o­gists got to do with pain?’

McCrack­en: It’s a great ques­tion. It’s impor­tant and very con­fus­ing and so impor­tant it’s worth say­ing it as many times and in as many dif­fer­ent ways as we can. Every­one comes into treat­ment and at one lev­el they want the same thing: they want their life to be bet­ter. As human beings with pain, we quite nat­u­ral­ly look at the prob­lem as a pain prob­lem and like: ‘The pain is there, I used to func­tion, the pain came, now I don’t func­tion. If I could get rid of the pain, my func­tion­ing would be good.’

That’s how they under­stand the prob­lem. It’s com­plete­ly nat­ur­al – I’m not say­ing that’s wrong, I would nev­er say that that’s wrong. There is some­thing very nat­u­ral­ly human about encoun­ter­ing a pain prob­lem like that. The dif­fi­cul­ty with encoun­ter­ing a pain prob­lem like that is that people’s expe­ri­ence over 10, 15, 20, 30, 40 years is that the more they try to fol­low that, the more frus­trat­ing their life gets and the small­er their life gets. Nonethe­less, the oth­er goals are still there: ‘I want to par­tic­i­pate in my life with peo­ple I care about. And I want to fin­ish school. I want to do mean­ing­ful work. I want to be a role-mod­el for my chil­dren.’ And notice: it’s all behav­iour. So what if psy­chol­o­gists had a tech­nol­o­gy to help that behav­iour to happen?

Alan: A lot of us will want a rea­son for what’s hap­pen­ing, so when we get some pain or what­ev­er, we try to analyse why, was it because of this, that or the oth­er, but that’s tak­ing you away from what’s going on. You’ve got some pain now, at this par­tic­u­lar moment, and you’ve got to work with it at that time.

Evans: So it’s get­ting through the moment rather than the longer term.

Jen­ny: Yeah, not look­ing at… it’s like our minds want to offer us a thought straight away and an action straight away, so it’s try­ing to do some­thing dif­fer­ent from the norm. So it’s not auto-pilot. So if we approach some­thing that in our his­to­ry – it may have been we’ve had a fall before, or some­thing like that – it’s about tak­ing it at that moment, step by step, try­ing to notice that we’ve got those thoughts of anx­i­ety or ‘we can’t do it’, but try­ing to see our cur­rent abil­i­ty, if we can man­age to do that par­tic­u­lar thing. So we do a thing called a ‘check-in’ and we do what’s known as the ‘hot cross bun’ and that’s we have to check in with our body sen­sa­tions, our thoughts, our feel­ings and our actions. And then that gives us the options that – do we just go down the path of least resis­tance, or do we try and go towards what we val­ue in life.

McCrack­en: Most of the treat­ment time for most of the patients we see is group-based. Now, we pro­vide an array of dif­fer­ent ser­vices. There are some ser­vices that we deliv­er that are exclu­sive­ly indi­vid­ual-based from start to fin­ish. We do a pret­ty small frac­tion of that. This is for peo­ple whose dif­fi­cul­ties and cir­cum­stances would pre­vent them from par­tic­i­pat­ing in a group and doing well in a group. Most peo­ple are in groups – groups of between six and 10 peo­ple. Groups are good places to do treat­ment in some ways, because it’s a social sit­u­a­tion, it’s like life: it includes deal­ing with oth­er peo­ple, com­mu­ni­cat­ing with oth­er peo­ple and deal­ing with their own emo­tions and expe­ri­ences that hap­pen around chal­leng­ing social cir­cum­stances. So there’s a bit of real­i­ty and there are chal­lenges there that are very use­ful in treat­ments, so that’s a – that’s a good side of that.

Evans: How far into the pro­gramme are you?

San­dra: Mid­way, begin­ning of the third week.

Evans: So where are you all men­tal­ly in your change?

Alan: Well, I’m just still open. They’ve con­vinced me to car­ry on this thing for the next 10 days and that’s what I’ll do and try and use what I’ve learnt so far and what I will learn in the next 10 days.

Evans: Why did they have to con­vince you?

Alan: Because that’s my weak­ness, in that I have to be con­vinced of some­thing to be able to car­ry on giv­ing it its due and being able to say, ‘yes, you’ve earned the right for me to car­ry on lis­ten­ing’. Hope­ful­ly, I’ll begin to live more in the moment, begin to choose things, rather than decide, which is one of the ben­e­fits of this course.

Jen­ny: I can only say for myself that I have noticed changes – that I am real­ly recog­nis­ing thoughts and how they are hold­ing me back a lot of the time, you know, my feel­ings. And I may have noticed them before, but I didn’t real­ly know how to deal with them and also they used to stop me from doing quite a lot of things, where­as now I’m a lit­tle bit more proac­tive in doing cer­tain things in my life. Not push­ing them aside – no, rec­og­niz­ing they’re there – but I can still move for­ward. So, me per­son­al­ly, I’ve noticed that I’ve… I have had some changes in the way I do think.

Evans: Do you think you will be able to take that out into the real world, beyond the hos­pi­tal walls?

Jen­ny: It’ll be dif­fi­cult. It’s going to be dif­fi­cult. You know, we have week­end leaves, we’ve just all had a long week­end and you do come across a lot of chal­lenges and I think a lot of it’s down to com­mu­ni­ca­tion as well, isn’t it?

Alan: Yeah, one of the things I think will help us is – those of us that will be able to take advan­tage of it – is that one day a week – it’s turned out near­ly, or one day a fort­night – part­ners and fam­i­ly come in and sit in on it. And not only does that show them what’s hap­pen­ing, but it gets them involved, so they’ll be able to work with us after­wards to trans­fer it to the real world.

Evans: How the team pre­pares them to re-enter the real world is some­thing we’ll deal with lat­er in the pro­gramme. But we’ve already said that the Cen­tre for Pain Ser­vices in Bath treats peo­ple of all ages, which includes chil­dren down to the age of 11 and some­times even younger. Dr Han­nah Con­nel leads the team of phys­ios, occu­pa­tion­al ther­a­pists, doc­tors and nurs­es who all pro­vide this ser­vice to help young peo­ple with chron­ic pain get back to age-appro­pri­ate activ­i­ties. You will also be hear­ing the voic­es of Sam Bar­ton and his moth­er Jan, who you may remem­ber from an ear­li­er edi­tion of Air­ing Pain. Both attend­ed the course when Sam was a teenag­er. So, age-appro­pri­ate activities?

Dr Han­nah Con­nel: What we mean by age-appro­pri­ate activ­i­ty is any­thing that you would expect a young per­son or an adult of that age to be doing. So for some­body who’s 11 to 18, most young peo­ple are in edu­ca­tion, so it’s help­ing peo­ple with pain access edu­ca­tion. For an adult, it might be work or it might be par­tic­i­pat­ing ful­ly in a fam­i­ly life.

Evans: I’ve talked to some­body who had been on this pro­gramme. He was a teenag­er when he came. He said, ‘drink­ing, going out with my mates, going to school and all that stuff’, and that’s what I asso­ciate with a nor­mal teenager.

Sam Bar­ton: I just want­ed to work, want­ed to get a job, want­ed to be nor­mal, want­ed to go out drink­ing, doing every­thing that, you know, a nor­mal 16–17 year-old would be doing…

Con­nel: And that’s exact­ly what we would hope young peo­ple would be get­ting back to doing, so in one of our young adult pro­grammes for 18s through to 20s, we expect them to do that. And the team con­sid­er it a very good out­come if they’ve been and had a real­ly good night out, because that’s what their age group should be doing, so that’s age-appro­pri­ate activ­i­ty by my book too. Many ser­vices – some in this coun­try, but quite a few abroad – will take the chil­dren away and admit them and treat them more indi­vid­u­al­ly. We would rather treat the par­ents and the child as a dyad, because basi­cal­ly the par­ents are there – once they get home they’re present 24/7 – where­as we’re not. So if we can get the par­ents to man­age things dif­fer­ent­ly, then the outcome’s over­all much, much better.

Evans: But is there a big­ger point here that pain doesn’t just affect the indi­vid­ual, it is, well, a fam­i­ly thing?

Con­nel: Yeah, absolute­ly, and there’s some real­ly love­ly research that one of my col­leagues did a few years ago look­ing at the impact of a child’s pain on the par­ents and the par­ents were describ­ing things like feel­ing com­plete­ly hope­less, feel­ing accused of caus­ing the prob­lems, you know, just stress lev­els are very, very high. So it undoubt­ed­ly affects the parents.

I think you need to remem­ber that it affects grand­par­ents and extend­ed fam­i­ly and also broth­ers and sis­ters. So for exam­ple if you’ve got a sib­ling that can’t trav­el in a car, that has huge impact on what the fam­i­ly can do as fam­i­ly-shared activ­i­ties, hol­i­days, all sorts of things. Par­ents may have to give up work to look after the child with pain, which has a huge impact on the finances of the family.

Jan Bar­ton: When Sam was first on all the med­ica­tion, and he was about 13, when we’d come back from Lon­don and we’d been told: ‘Well, there you go guys, he’s on the meds, 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 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 he… when it hap­pened and he was quite trau­ma­tised by this and the fact that then Sam was see­ing things walk­ing round the house and we’d go to sit on a chair and Sam would say: ‘Don’t sit there, because there’s – Marvin’s there.’ Because the way Sam dealt with it was that he invent­ed a good­ie called Mar­vin. Now Mar­vin would chase away all the bad shad­ow peo­ple, weren’t they? Shad­ow people?

Sam: Yeah, you know, at the age of 13, 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.

Jan: How­ev­er, his lit­tle broth­er had even less insight as he was only 10 and was absolute­ly trau­ma­tised by all of this. And as an exam­ple of how it then affect­ed the fam­i­ly group, for 6 months after­wards, he would not go any­where in the house on his own.

Con­nel: So our approach here is: yes, the child has the pain, but the impact that the pain has is on the fam­i­ly as a whole and that’s what we’d like to treat.

Evans: Par­ents aren’t just observers, then?

Con­nel: No, no – par­ents here in Bath are cer­tain­ly not observers. As part of the assess­ment process, par­ents have to con­sent to tak­ing part in the pro­gramme ful­ly. There’s an ele­ment of the pro­gramme that looks at par­ent­ing and we try to enhance some par­ent­ing skills that we’ve learnt that are help­ful for par­ents who are strug­gling to man­age a child with chron­ic pain. The par­ents also need some look­ing after as well, because they get very, very dis­tressed, so they need some skills and an approach to man­ag­ing their own dis­tress and liv­ing the life they want to do for them­selves, rather than the whole fam­i­ly focus being just on the child. And once that can open up a lit­tle bit, par­ents and chil­dren find some pret­ty dif­fer­ent ways for­wards and some ways of doing some of the things that they’ve lost along the way.

Evans: Describe some of the par­ent­ing skills that you might try and give people.

Con­nel: Well, I guess it’s less cer­tain par­ent­ing skills, although some­times those do need to be looked at, sort of, you know, prais­ing up good behav­iour, man­ag­ing sort of, tantrums and think­ing about how to man­age, sort of, dif­fi­cult sit­u­a­tions, man­ag­ing the return to school, how to talk to teach­ers, how to get the edu­ca­tion­al sup­port that is need­ed. But we aim as well to help par­ents look more flex­i­bly at the sit­u­a­tions that they’re in; to think about how their child’s pain affects them; think about how their thoughts and their emo­tions and their dis­tress might lead them to react or lead them to act in cer­tain sit­u­a­tions that in the long term aren’t par­tic­u­lar­ly help­ful. A great exam­ple of that is when chil­dren are in excru­ci­at­ing pain at night and you feel very alone and you feel very, very scared – a lot of par­ents will have the expe­ri­ence of hav­ing tak­en their child to A&E and most peo­ple would report that that prob­a­bly wasn’t the best course of action. So what we aim to do is help the par­ents under­stand where they’re at, so that they can make choic­es and they can do things that in the longer term help them and serve them better.

Evans: Because par­ent­ing a teenag­er who is not in pain is not always the eas­i­est thing in the world, is it?

Con­nel: No, par­ent­ing teenagers is not easy at all and I think when you’ve got a teenag­er who’s in pain, you’ve got the ordi­nary teenage issues and the pain issues on top and the par­ents often say: ‘I’m not sure what’s pain and what is just the child being the age that they are.’

And we give par­ents, I guess, here, an oppor­tu­ni­ty to think that through, so that they can try to man­age dif­fi­cult sit­u­a­tions, hold­ing both those ideas in their heads and mak­ing the best pos­si­ble deci­sion they can. I think one of the things that a lot of par­ents do is, because they feel sor­ry for their child in pain, is they let them away with things, which is very, very under­stand­able, but some­times doesn’t help in the long term.

And a great exam­ple of that would be: if you’ve got a child who has been up all night, hasn’t slept well, is feel­ing ghast­ly, let­ting them sleep in and hav­ing break­fast in bed. Now that’s a love­ly par­ent­ing thing to do, and cer­tain­ly, in cer­tain sit­u­a­tions, I would encour­age it com­plete­ly. But if that becomes what you do most days, then you haven’t got a young per­son who’s get­ting up, who’s doing things for them­selves, or is in a place ready to go to school.

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 of try­ing to man­age this. When you do a course like that, they ask you: ‘What is your aim for 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 that – 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 in man­ag­ing, it was very helpful.

Bar­ton: 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 – it 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.

Evans: Stay­ing with the par­ent­ing busi­ness, sleep and teenagers go hand in hand. With the best will in the world, it can be dif­fi­cult to get a teenag­er out of bed.

Con­nel: Absolute­ly.

Evans: So how do you change a sleep pattern?

Con­nel: First of all, I think we need to remem­ber that teenagers go through devel­op­men­tal bursts, when they sleep an awful lot. And they need to have extra hours in bed. When you have pain, it’s very tempt­ing to sleep more because you’re not so aware of the pain, to sleep more because you haven’t got oth­er things that you can do any­more and also there’s the qual­i­ty of sleep that’s real­ly poor and dis­turbed, so young peo­ple often spend a lot of time in bed, but not actu­al­ly sleep­ing well.

What we would look at is if the sleep is get­ting in the way of young peo­ple being up and active in what I would call the ‘active hours’, so Mon­day to Fri­day, between about 9 and 4, so rough­ly the school plans, it needs to be looked at. If young peo­ple need to sleep in at the week­end, then that’s what they do.

In the ear­ly days of turn­ing round a very dis­turbed sleep pat­tern, you need to keep the con­sis­ten­cy over the week­ends. So you need to have a sleep pat­tern where young peo­ple are going to bed at an appro­pri­ate time, but more impor­tant­ly get­ting up at a reg­u­lar time, whether they’ve been to sleep or not. It’s a bit more of a jet­lag approach. Young peo­ple feel real­ly quite awful in the first few days, but the sleep changes hap­pen quicker.

I think when we’ve tried to do this more grad­u­al­ly, more gen­tly – so going to bed an hour ear­li­er, get­ting up a lit­tle bit ear­li­er – young peo­ple feel hor­ri­ble, but for even longer. So we would rather do it quite quick­ly. And I think it’s that those times where young peo­ple need to be get­ting up at week­ends and not hav­ing a lie-in.

But once their sleep pat­tern has improved over­all, then they can go back to a more age-appro­pri­ate, long-lines sleep pat­tern at the week­ends only, as long as they’re up for school or what­ev­er activ­i­ty that they want to do in the week.

Bar­ton: And it was just a case of, you know, mak­ing us get up in the morn­ing, mak­ing us do some exer­cise, whether it was painful or not, you know, and just try­ing to get us into a bet­ter rou­tine, you know.

Evans: I’ve heard the teenagers here use the term ‘boot camp’?

Con­nel: No, not real­ly, um, I think it could sound like that because there is a clear pro­gramme that they’re expect­ed to par­tic­i­pate in. But I think the approach here and hope­ful­ly the kind­ness and the insight of the staff would mean that the expe­ri­ence that they have when they’re here sends that term away. Because I think ‘boot camp’ means to me, sort of, push­ing some­body to do some­thing, forc­ing them to do some­thing and that’s cer­tain­ly not what we want – we want young peo­ple to work out what works for them and choose to do it because the out­come for them is what they want.

Evans: It’s a 3‑week pro­gramme. Can you see the changes in per­son­al­i­ty as they go through it?

Con­nel: Oh, we see some dra­mat­ic changes in young peo­ple. When young peo­ple first come in, the first cou­ple of days of the pro­gramme, they’re very, very qui­et, they hard­ly talk to each oth­er or the staff and the par­ents have to do a valiant attempt to keep the con­ver­sa­tion going. As the first week goes on, the young peo­ple sort of… you get to know a lit­tle bit more who they are and what they’re like and you start learn­ing about them and they learn about us as a team as well and we start get­ting to know each oth­er and get­ting along.

The mid­dle week, the par­ents are not present for many ses­sions, and it’s at that time that the young peo­ple real­ly do come out of them­selves and we get a lot of fun, we get their own choice of music com­ing in, they make friend­ships with­in the group and have quite a nice time, even though they are work­ing very, very hard and address­ing some dif­fi­cult mate­r­i­al. And I think in the third week, you begin to see the young peo­ple sep­a­rate a lit­tle bit from the clin­i­cal team and start think­ing about going home and then you can get much more of a sense of who that per­son real­ly is, what they’re going to do when they get home and the sort of life that they real­ly want to be leading.

It’s not uncom­mon for young peo­ple to change their hair, or change their clothes, or look quite dif­fer­ent as they leave the pro­gramme. So we’ve got the phys­i­cal gain, so that they’re often fit­ter and walk­ing bet­ter, but that’s often enhanced by a change of hair-do, make-up being put on, dif­fer­ent clothes, some­thing like that as well. So it’s a love­ly change that we see over the 3 weeks and it’s even bet­ter at the 3‑month fol­low-up – they’re even more dif­fer­ent there.

Evans: How do you pre­pare peo­ple for going to the out­side, if you like, after the 3 weeks?

Con­nel: Okay, the last week of the pro­gramme real­ly is focused on that. There are ses­sions where young peo­ple work out their timeta­bles with school, think about how they are going to fit exer­cise in, think about what… which friends they are going to con­tact, think about which health­care pro­fes­sion­als are going to be use­ful to them in the future. So the whole of the last week is think­ing about what you’ve gained in Bath and how you’re going to take it home and make it part of your life for the long term.

Evans: Dr Han­nah Con­nel. And that’s the end of this edi­tion of Air­ing Pain. If you or some­one you know has ben­e­fit­ed from these pro­grammes and would like them to con­tin­ue, then please con­sid­er mak­ing a dona­tion to secure Air­ing Pain’s future. It’s very easy to do: just go to our web­site at painconcern.org.uk, where you’ll find a ‘Make Dona­tion’ but­ton. You can also down­load all the past edi­tions from there and if you’d like to put a ques­tion to our pan­el of experts or just make a com­ment about the pro­gramme, then please do so via our blog, mes­sage board, e‑mail, Face­book, Twit­ter or even pen and paper, in which case you’ll need our address which is: Pain Concern,1 Civic Square, Tra­nent, EH33 1LH. And I’ll leave you with some final thoughts from the patients at the Cen­tre for Pain Ser­vices at Bath.

So, a ques­tion to all of you – half-way through the pro­gramme, are you glad you came?

Anne: Oh, absolute­ly.

San­dra: Yeah, absolute­ly.

Jen­ny: Yeah, you know, best thing that’s ever happened.

Alan: I hope I am. But again, that’s down to me, not the course – it’s open­ing my eyes up, and it’s – it’ll be how it gets used when we leave here.

Anne, San­dra: Yeah.

Alan: And I’ll be able to answer that ques­tion when we come back for a review ses­sion, once we’ve had three months or what­ev­er, of using it. As you your­self said, would we be able to apply it in the real world? That’s the crit­i­cal answer. And if it’s yes, then it’s a real­ly good course.


Con­trib­u­tors:

  • Bath Patient Group
  • Dr Lance McCrack­en, Clin­i­cal Direc­tor, Cen­tre for Pain Ser­vices at the Roy­al Nation­al Hos­pi­tal for Rheumat­ic Dis­eases, Bath
  • Dr Han­nah Con­nel, Chron­ic Pain Ser­vice Lead
  • Sam Bar­ton
  • Jan Bar­ton.

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