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Transcript — Airing Pain 118: Pain Management in Young People

How chron­ic pain in ado­les­cence requires dif­fer­ent pain man­age­ment strate­gies. 

To lis­ten to this pro­gramme, please click here.

In this edi­tion of Air­ing Pain, Paul Evans looks at the issues con­cern­ing pain amongst ado­les­cents, includ­ing the impact on par­ents. First-off, Paul speaks to Dr Jere­my Gaunt­let-Gilbert, prin­ci­pal clin­i­cal psy­chol­o­gist at the Bath Cen­tre for Pain Ser­vices, to talk about the “end of the road” res­i­den­tial pain man­age­ment pro­gramme the Cen­tre has for young peo­ple from across the UK who have not had suc­cess at oth­er insti­tu­tions. 

Paul also speaks to Amyra and Tay­lor, who have first-hand expe­ri­ence of the pro­gramme, about their time in Bath. They also dis­cuss how chron­ic pain has affect­ed their per­son­al lives, includ­ing their per­for­mance at school and in exams. 

The par­ents’ expe­ri­ence is also explored as Paul speaks to Taylor’s mum San­dra McCann and Louise Bai­ley, the moth­er of anoth­er patient. They describe how the Bath Cen­tre for Pain Man­age­ment has made a pos­i­tive impact on the abil­i­ty of their chil­dren to have a more reg­u­lar life. Paul also dis­cuss­es with Louise and Dr Gaunt­let-Gilbert about the wider impact on sib­lings and the rest of the fam­i­ly. 

Dr Gaunt­let-Gilbert also talks about the Centre’s com­mit­ment to tran­si­tion­al sup­port for indi­vid­u­als between ado­les­cence and adult­hood as well as beyond. This edi­tion con­cludes with the par­ents and young peo­ple deliv­er­ing their ver­dict on the Bath Cen­tre for Pain Ser­vices’ pro­gramme. One that indi­cates it is a very hard but reward­ing process, with the young peo­ple clear­ly find­ing enjoy­ment in their time there. 

Issues cov­ered in this pro­gramme include: Chil­dren and young peo­ple, CRPS: com­plex region­al pain syn­drome, devel­op­ment, edu­ca­tion, fam­i­ly, flare-up, friends, home­school­ing, hyper­sen­si­tiv­i­ty, inde­pen­dence, mind­ful­ness, pac­ing, phys­io­ther­a­py, res­i­den­tial pro­gramme, school and stom­ach pain. 

Paul Evans: This is Air­ing Pain, a pro­gramme brought to you by Pain Con­cern, the UK char­i­ty that pro­vides infor­ma­tion and sup­port for those of us liv­ing with pain and those who care for us. I’m Paul Evans. 

Amyra: I did not realise how awful I can be on one of my bad days. Hon­est­ly, it was weird because I had two peo­ple play­ing me. I did­n’t realise how I actu­al­ly am on my bad days 

Louise Bai­ley: They were shout­ing in the morn­ing to say, ‘Come on, you got to get out of bed’ [but], I can’t get out of bed, I haven’t slept, I can’t move my arms, etc. And then it’s the cry­ing – it’s affect­ed the whole family. 

Evans: Ado­les­cence, that tran­si­tion­al peri­od from the onset of puber­ty, rough­ly from the age of eleven or twelve, is when chil­dren grow phys­i­cal­ly and men­tal­ly into adults. It can be a stress­ful time, not just for the young per­son going through it, but for par­ents and sib­lings. Now, throw chron­ic pain into the equa­tion, and there’s a whole new set of issues to deal with. The Bath Cen­tre for Pain Ser­vices runs pain man­age­ment pro­grammes for peo­ple of all ages, includ­ing young peo­ple from the age of nine. They can attend a three week, group-based, res­i­den­tial pain man­age­ment pro­gramme accom­pa­nied by their pri­ma­ry car­er, who’s usu­al­ly a par­ent. It’s a nation­al ser­vice so peo­ple from all over the UK could be referred there. So obvi­ous­ly apart from help­ing young peo­ple man­age the pain in their lives, why is it so impor­tant to deal with what are prob­a­bly life­long con­di­tions so ear­ly in life? Dr Jere­my Gaunt­let-Gilbert is Prin­ci­pal Clin­i­cal Psy­chol­o­gist at the Bath Cen­tre for Pain Services. 

Jere­my Gauntlett-Gilbert: If you can set things back on the right track in this ter­ri­bly impor­tant devel­op­men­tal peri­od, then you’ll have done the right thing at the right time. You don’t want to be doing this late. Some of the phys­i­cal devel­op­men­tal changes and the men­tal devel­op­men­tal changes have become con­cret­ed in. And equal­ly you feel the pres­sure of not want­i­ng to miss oppor­tu­ni­ty, at four­teen, fif­teen, thir­teen, you’re doing things with your peers at school, you’re hav­ing inde­pen­dence expe­ri­ences that are very hard to make up for lat­er in life. You know, it’s very hard to sort of claw that back. There are crit­i­cal moments devel­op­men­tal­ly, obvi­ous­ly, phys­i­cal­ly if you want to think bio­log­i­cal­ly, but tru­ly in terms of the devel­op­ment of inde­pen­dence, and your abil­i­ty to socialise with peo­ple. So, we do feel the pres­sure breath­ing down our neck as pae­di­atric clin­i­cians that we real­ly need to get young peo­ple back on track at the right time. The good part is that at least there is a track to get back on to – school and edu­ca­tion do pro­vide a sort of nat­ur­al devel­op­men­tal sup­port, you know, they can get back into some­thing and get back on it in a way that it’s hard­er to as an adult. 

Evans: Who do you see then? 

Gilbert: We are in a fun­ny ser­vice, it’s a lit­tle bit like being, for exam­ple, at Great Ormond Street, so we only see the peo­ple who have strug­gled to ben­e­fit any­where else. So we’re very much the end of the line, in a sense. So we see young peo­ple who been through pae­di­atric ser­vices, have per­haps tried some local phys­io­ther­a­py, tried some med­ica­tions, there’s usu­al­ly a mix of expe­ri­ence, peo­ple have usu­al­ly seen quite a few clin­i­cians, a pro­por­tion of peo­ple feel slight­ly dis­ap­point­ed with what they’ve been through. By def­i­n­i­tion, it has­n’t worked. Oth­er­wise, they would­n’t have to come to us, would they? But also, you know, you know, as well as any­body that pain ser­vices are patchy across the coun­try and patch­i­er for chil­dren and young peo­ple. And some­times peo­ple have had unfor­tu­nate mes­sages giv­en to them, some­thing along the line of, ‘Well it’s all in your head and your par­ents should­n’t be so anx­ious and I real­ly can’t see why you’ve got this much pain, because your scans look fine.’ Now this is the same in ado­les­cent and adult con­di­tions, only [in this case] you’ve got the kid and their par­ent respond­ing to these some­times slight­ly dis­ap­point­ing treat­ment expe­ri­ences. So, we’re try­ing to take peo­ple who’ve usu­al­ly had pain for a long time, and missed a chunk of school as a rule. This is usu­al­ly not their first rodeo in terms of treat­ment expe­ri­ences, and we are try­ing to hope­ful­ly pro­vide a lev­el of inten­si­ty and spe­cial­ism that can nonethe­less move things on. 

Evans; You’re residential? 

Gilbert: That’s right. Yeah. So, chil­dren and their par­ents, or one par­ent come and stay with us for three weeks, so they can come from all over the UK. So they usu­al­ly, as you can imag­ine, arrive fair­ly ner­vous and ter­ri­fied into the group. And one of our mea­sures of suc­cess is the amount of noise and row­di­ness we can achieve by week three in the group of young people. 

Evans: That’s Dr Jere­my Gauntlett-Gilbert. Well, I joined the last day of one of the pain man­age­ment pro­grammes in Bath ear­li­er this year. So, you can mea­sure the row­di­ness index at the end of this edi­tion of Air­ing Pain. Two of the young peo­ple I spoke to were Amyra and Tay­lor, Amyra first. 

Amyra: I have chron­ic pain in my stom­ach. So, I have chron­ic stom­ach aches, con­trol­ling the pain has been dif­fi­cult, and I’ve been quite with­drawn from life. So, Bath was the last resort to help me just get back on track and [I] thought it would be per­fect for me. 

Evans: Tell me some­thing about your pain. I mean, how long has that been affect­ing your life? 

Amyra: Since Feb­ru­ary 2017. So, it’s been about two and a half years. 

Evans: How old are you then? 

Amyra: Sev­en­teen, turn­ing eigh­teen soon. 

Evans: Has it affect­ed your social life, your education? 

Amyra: I’ve not been in edu­ca­tion in two and a half years, since I’ve had the pain, like prop­er edu­ca­tion at hos­pi­tal, home school­ing. And social life is pret­ty lim­it­ed, [I] don’t have much of a social life. 

Evans: Tay­lor, tell me some­thing about your pain. 

Tay­lor: So, I’ve got CRPS in my left foot. I’ve had it since Sep­tem­ber 2017. So, it’s just com­ing up for two years since I’ve had it. It’s been like a con­stant thing since I got it. Some peo­ple have breaks from the pain but I’ve just like had it full on, luck­i­ly mine hasn’t spread though, because it can spread. 

Evans: How has that affect­ed your education? 

Tay­lor: I’ve stayed in edu­ca­tion, but I’ve like… my atten­dance isn’t as great as it used to be. It is get­ting bet­ter now, but then obvi­ous­ly, you do get bad days where you just can’t phys­i­cal­ly go in. 

Evans: That’s Tay­lor, now as we’ve heard she and each young per­son is accom­pa­nied by a par­ent, and par­ents are not there just as chap­er­ones, but as par­tic­i­pants. So, do they work sep­a­rate­ly from their chil­dren? Dr Jere­my Gauntlett-Gilbert. 

Gilbert: It’s a lit­tle bit of both. Most of the time we have them in with the kids. That does­n’t mean that they’re work­ing with their child every microsec­ond of the time. Some­times, although they might all be in the same room, we have par­ents work­ing with par­ents and kids work­ing with kids, or par­ents work­ing with oth­er peo­ple’s kids, which is quite an eye open­ing expe­ri­ence for the child and the par­ent. But of course, we give the par­ents a lit­tle bit of time to them­selves because there are absolute­ly things which peo­ple will want to say and want to dis­cuss and want to put out there, which they would­n’t say, right in front of their child. And it’s real­ly impor­tant that peo­ple have the space to do that. 

Evans: Well, we heard ear­li­er from Tay­lor and San­dra is her mum. 

San­dra McCann: For the first week, we were in all the class­es that the young adults were in as well. We sat through the activ­i­ty, the physio, the psy­chol­o­gy, the spe­cial­ist kind of ses­sions that we had. We also par­take in the physio side of things, body con­di­tion­ing. And then the sec­ond week less so, we basi­cal­ly had free time which was amaz­ing. And then [in] the third week, we were back in all the class­es along with them. I think it gives you a bet­ter insight into what your own child is going through but then also what chron­ic pain entails for chil­dren at that age. 

Evans: It seems very for­ward-think­ing to bring mum or dad along as well. But I’m just think­ing, is it always pro­duc­tive to have a par­ent there, or can a child, you know, be clois­tered by his mum or dad? 

Gilbert: That’s a good ques­tion, I’d stick my neck out and say that it’s always help­ful to have a par­ent there. Now, obvi­ous­ly, you want par­ents to be co-ther­a­pists, we want them to look and see the skills and tech­niques [that] their child’s learn­ing. We want them to do the exer­cis­es, if it’s a physio so that they can sup­port that at home and do it along­side their kid. And as you point out, it’s also the case that some par­ents have been so kicked about by hav­ing the expe­ri­ence of hav­ing a child in pain, not being able to help, not always get­ting the ser­vices that they would have want­ed, that it’s help­ful for the par­ents to reflect on what they can do to help the child move for­ward. We don’t real­ly see par­ents as the prob­lem, but we def­i­nite­ly see them as part of the solu­tion. And so, if you do have a par­ent who is – it’s a hor­ri­ble phrase – over­pro­tec­tive. Any­body who’s been a par­ent will be sym­pa­thet­ic to that one; it’s not a crit­i­cal term. Then hav­ing them there, [which helps] that par­ent to gain the con­fi­dence to step back, to be able to see that their child has more capac­i­ty than they feared up until that point, is a nerve wrack­ing but real­ly impor­tant and valu­able piece of therapy. 

Evans: It can be over­looked that pain affects every mem­ber of the fam­i­ly, not just the per­son with­in pain, and the over­bear­ing par­ent is not doing it out of spite. 

Gilbert: Good Lord no. 

Evans: It’s because their lives are in tur­moil as well. 

Gilbert: Yes, the whole fam­i­ly is in tur­moil. I think we’re becom­ing increas­ing­ly aware of the less vis­i­ble sib­lings, as well, who are try­ing to live their lives whilst a lot of parental ener­gy and atten­tion is divert­ed on to the to the young per­son who is unwell. And it’s sad to say this is usu­al­ly gen­dered, isn’t it? It’s usu­al­ly mum who ends up hav­ing the bur­den of pro­vid­ing a lot of the emo­tion­al care and doing the heavy lift­ing in that area, and very often being the per­son who takes the young per­son to appoint­ments, nego­ti­ates with con­sul­tants and phys­io­ther­a­pists and things like that. And I’m sure that’s not quite how they envis­aged their life pan­ning out at this stage. So yeah, it’s a fam­i­ly that takes the hit, not just the child. 

McCann: It brings you clos­er with your child being here. Obvi­ous­ly, you’ve got your child in a one-to-one basis for three weeks. There’s no dis­trac­tion from work, or time pres­sures through any­thing else, so there­fore, you’re spend­ing the time with them, you can see exact­ly what’s hap­pen­ing with them. It gives you that insight that prob­a­bly nobody else [has]. So, we’ll head back up to Aberdeen today. How­ev­er, Tay­lor and I know what’s going on here, but like [to] com­mu­ni­cate that three weeks back to the peo­ple that you live with the peo­ple that you’re close to. It’s going be quite a strug­gle, I would imagine. 

Evans: Are you helped with that here, of how to rein­te­grate with your own family? 

McCann: Def­i­nite­ly, yeah, there was a lot of time spent yes­ter­day espe­cial­ly going over the expe­ri­ences that oth­er peo­ple have had. And we did some role plays yes­ter­day, which were very insight­ful too, I think, to both the adult and the child. 

Evans: In what way? 

McCann: Well, yes­ter­day we were set up as a par­ent with some­body else’s young per­son. And basi­cal­ly, that young per­son had to explain to you how they were feel­ing [and] how they dealt with things nor­mal­ly, then you had to act as that young per­son. And then they had to try and bring you out of where you were on your bad days, and let them have an insight into how they act­ed and how it was per­ceived to oth­er peo­ple, while at the same time allow­ing them to think what would actu­al­ly help them going for­ward and how they could talk them­selves out of just say­ing flat no to doing things or using the strate­gies that they’ve learnt here over the last three weeks. 

Tay­lor: It’s weird hav­ing some­one else being you, you realise how dif­fi­cult you can be on your real­ly sore days. And even just explain­ing how, like to the oth­er per­son how, what you would do and how you would react. It’s weird, and it makes you realise what you’re doing. So, I think like, you kind of feel a bit stu­pid, but then we had to try and talk the per­son who was play­ing us out of, like, ‘Oh come on, let’s go do some­thing.’ So it was weird. You realise how dif­fi­cult you actu­al­ly are. 

Amyra: I did not realise how awful I can be on one of my bad days. Hon­est­ly, it was weird because I had two peo­ple play­ing me. I did­n’t realise how I actu­al­ly am on my bad days. It’s kind of a weird feel­ing because this [was] even explained [to me] before the role play. You don’t real­ly know how you act, even when you start explain­ing how you act. It doesn’t seem nice to know how you act, but then it’s kind of help­ful because you realise okay maybe I’m quite angry, frus­trat­ed, quite nasty, snap­py on my bad days. 

Evans: So, peo­ple play­ing your char­ac­ter, how do they know all this? 

Amyra: We have to tell them how we act and then they can also pick up on how we’ve been act­ing here. So, then they got some of the pos­ture, some of the facial expres­sions and some of how we speak and we had to explain to them how we are. It was a bit uncom­fort­able because it’s weird because you don’t know how you act unless some­one else does it for you, so it is like a mir­ror. That is mind blow­ing because you don’t realise how you actu­al­ly are on your bad days, what type of per­son you can be. 

Evans: The oth­er thing that occurs to me to do some­thing like that. You’re not the only peo­ple in the part­ner­ship if you like, hav­ing a role play – your par­ents have to role play as well. So, did you find out some­thing about how your moth­er or her alter ego, the per­son play­ing your moth­er if you like, per­ceives you? 

Amyra: I think I realised how dif­fi­cult it is for my mum on my bad days to me, I’ve just realised how dif­fi­cult I can be and how dif­fi­cult it is when you know your loved one’s in pain and you’re try­ing to just get them to do things and try to give sug­ges­tions, but I also think my mum has realised what it is like hav­ing pain and how we act. 

Evans: Louise Bai­ley is mum to Jas­mine who’s had Com­plex Region­al Pain Syn­drome- CRPS– since she was ten. 

Louise Bai­ley: With Com­plex Region­al Pain Syn­drome, she gets the sen­si­tiv­i­ty, so she could­n’t wear clothes. It was com­ing to win­ter, so she couldn’t wear long sleeves or if she could it would only be for a short amount of time. She missed a good 50% of her school and with it being a main GCSE year, obvi­ous­ly, it was a grave concern. 

Evans: GCSE. So, she’s fif­teen now? 

Bai­ley: Six­teen 

Evans: Six­teen, [so, are the] results out? 

Bai­ley: Results, yes, she got [them] yes­ter­day, yes. 

Evans: How did she get on? 

Bai­ley: She done real­ly, real­ly well. The school allowed her to drop a cou­ple of GCSEs because obvi­ous­ly with the amount of school­ing she missed. They had a scribe for her. So she only man­aged to sit six exams. Lucky enough with the oth­er sev­en exams, apart from one, she’d cov­ered over 25% of the course­work. And because we’d actu­al­ly man­aged to get an appoint­ment with the con­sul­tant, and he could see the amount of pain [she was in], and [that] there was no way pos­si­ble for her to actu­al­ly sit the exams. 

Gilbert: The good thing for a thir­teen or four­teen or fif­teen year old is, you can get back into school. And if you can get back into school that pro­vides so much momen­tum, all of a sud­den your day is struc­tured, you have social con­tact, whether you like it or not, you’re rub­bing up against your peers. You’ve got sen­si­ble adults around you who are push­ing you kind­ly and not­ing where you’re at. So school is just the most tremen­dous asset for young people. 

McCann: Tay­lor is excep­tion­al­ly dri­ven, [she] wants to go on and be a pae­di­atric doc­tor, but Tay­lor has a ten­den­cy to over-push her­self. She push­es and push­es and push­es with school with every­thing. And then she has a mas­sive crash. And those peri­ods where she crash­es, she miss­es a lot of school. She’s very dis­tract­ed at school, she strug­gles to study some­times in the evenings revis­ing for exams, and all that kind of things as well. So, her school has been var­ied with regards to her time off. But obvi­ous­ly, the empha­sis has been on Tay­lor to catch up. If she wants to con­tin­ue on the cours­es that she’s doing. 

Evans: Your mum was say­ing that you’re pret­ty driven. 

Tay­lor: Yeah, I def­i­nite­ly am. I used to think it was a good thing to be so dri­ven, but then since com­ing here, they’ve all said, ‘Right, you kind of need to slow down a bit.’ And it has made me realise that I keep going and going until I’m at the point where I’m like, phys­i­cal­ly sick with pain. So it’s a good and a bad thing because it’s got­ten me to where I am today, like for a while I was in, like I used crutch­es for a year and a half, was in a wheel­chair for going out. I had a cast on, I had a boot on, so I am a lot bet­ter than what I was like because of my dri­ve. Then at the same time it gets you to bad places as well, where I like… end up being phys­i­cal­ly sick. 

Evans: What have you learned here that might help you? 

Tay­lor: I need to slow down and appre­ci­ate the things that I have rather than keep­ing on going and that sort of things. 

Evans: That’s boom­ing and bust­ing, isn’t it? Yeah. 

Tay­lor: Yeah, [I’m] quite bad for that, definitely. 

Evans: Jasmin’s mum Louise 

Bai­ley: The last flare up in Sep­tem­ber caused a lot more pain. And [there were] sleep­less nights. There was shout­ing because in the morn­ing – I’d say, ‘Come on, you’ve got to get out of bed.’ [And she’d say,] ‘I can’t get out of bed. I haven’t slept, I can’t move my arms,’ etc. So, it’s the shout­ing and then it’s the cry­ing. So it has affect­ed the whole family. 

Evans: Does she have broth­ers and sisters? 

Bai­ley: Yes, she’s got a brother. 

Evans: How old is he? 

Bai­ley: He is a year old­er, he is seventeen. 

Evans: So, they’re very, very close in age. 

Bai­ley: Yes, yes. 

Evans: How has it affect­ed him? 

Bai­ley: Even though we don’t always show it, it’s a case of going to school, when he’s already been lis­ten­ing to shout­ing in the morn­ing. So, he’s just fin­ished doing his AS Lev­els. So some­times say­ing it’ll be a great start in the morn­ing, [but] wak­ing up to scream­ing and shouting. 

McCann: Tay­lor has a ten year old sis­ter. So, obvi­ous­ly it restricts what you can do as a fam­i­ly. It also means that some­times Tay­lor is your main con­cern when she’s been phys­i­cal­ly sick with pain. That kind of takes over from pret­ty much every­thing else that’s going on at the same time, so it does def­i­nite­ly impact every part of fam­i­ly life. 

Evans: Your mum was say­ing you’ve got a younger sis­ter. How do you think your chron­ic pain has affect­ed the fam­i­ly as a unit? 

Tay­lor: Obvi­ous­ly you have bad days. It means that you can’t do things that you’ve planned to do. So, it can affect your fam­i­ly life and like your fam­i­ly activ­i­ties, going out with your fam­i­ly. So, then you stop social­is­ing with them as much and it caus­es argu­ments. So, it had a detri­men­tal effect on the fam­i­ly, I’d say. 

Evans: How do you think it’s affect­ed your ten year old sister? 

Tay­lor: She tries her best to under­stand it, but she does­n’t. So, I feel like she some­times feels a bit left out pos­si­bly because mum will be deal­ing with me, and she’s just by her­self, like if my step dad is out, so I feel like it has a big effect on her. 

Evans: Have you learned any­thing here about how to sort of, well… live with or inte­grate with the family? 

Tay­lor: On a Fri­day we were mak­ing week­end plans and one of the week­ends, Jason and Luna came down and I planned to do fam­i­ly activ­i­ties and I’m quite a struc­tured per­son, and  if I’ve got a plan in place I’ll do it. So because of that, we went out to the beach­es and we were out. So, it shows you what you’re miss­ing sort of thing. And it encour­ages you to spend more time with them, that you’re going to be in pain any­ways. So, there’s no point sit­ting around feel­ing sor­ry for your­self, you’d be as well get­ting up and get­ting on with it as much as you can. Yeah, take breaks, that’s anoth­er thing that I have learnt, is like tak­ing breaks because before I just push myself to extremes. So, like tak­ing breaks whilst with fam­i­ly, so you can do more with them. It’s the boom and bust again, you don’t take a break so you don’t go too far. 

Evans: Amyra? 

Amyra: Yeah. Boom and bust. I do that a lot. It’s when I push myself too much. And then I become flat out on the oth­er days where I phys­i­cal­ly just can’t get up. Because I’m just dri­ven and just like to suc­ceed in every­thing and just not take breaks because I just tend to too much on the rare good days I get and then I’m just flat out. Well, since com­ing here teach­es you to be a bit more… not to do too much, just keep at a steady level. 

Evans: That’s pac­ing, isn’t it? 

Amyra: I like the sat­is­fac­tion of doing some­thing well. So pac­ing is very, very dif­fi­cult for any­body but espe­cial­ly if you want sat­is­fac­tion in every sin­gle thing you do, 

Evans: How have they helped you here, if they have helped you? 

Amyra: Mind­ful­ness, we do a lot of check­ing in. And that can just help your body tell you if you just did too much or [not enough]. But also some of the exer­cis­es – the phys­io­ther­a­py side of every­thing does help. 

Evans: You are in the mid­dle of Bath, some of these kids might not have been out­side for a long time, they get a shop­ping experience. 

Gilbert: That is exact­ly a cen­tral piece of the rehab. In a way we want to make our rehab very un-hos­pi­tal-like, because the rest of the world isn’t like a hos­pi­tal, we want kids to go into shops, go and get cof­fee, go and get strange like – juice mix­es and things like that from the juice bar. You know, we want them to go out with each oth­er. And you’re absolute­ly right. These can be, for some young peo­ple, very new expe­ri­ences and can be very nerve wrack­ing. But they’re absolute­ly a key part of the ther­a­py. We try and use the city as a kind of rehab play­ground, so that young peo­ple can choose care­ful­ly grad­ed tasks and go out and for exam­ple, be in a crowd of peo­ple, lots of young peo­ple with pain and adults with pain  are very afraid of being in a crush, being in a crowd, being shoved up against oth­er peo­ple because they’re going to get jos­tled, bumped and looked at as well. And these are risky, dif­fi­cult sit­u­a­tions but they’re things that in a sense need to be mas­tered. Oth­er­wise, the young per­son will real­ly nev­er leave the house. So, we’ve got a chance to, you know, ‘pur­pose design’, lit­tle exper­i­ments and moments of risk tak­ing that young peo­ple can do in Bath. 

Evans: It’s a very strange age, isn’t it because you’re a child up until the 364th day of your 17th year, the fol­low­ing day, you’re an adult, and the whole world changes for you. 

Gilbert: Even worse, the tran­si­tion chal­lenge in ser­vices is very often that pae­di­atric ser­vices will stop see­ing peo­ple when they are six­teen. And adult ser­vices will not see any­body until they are eigh­teen. And you could argue that those are two pret­ty impor­tant and sen­si­tive years of your life. So some­times there is actu­al­ly a gen­uine tran­si­tion gap where young peo­ple sort of dan­gle for lack of ser­vices. Now, peo­ple have recog­nised this prob­lem for quite some time, and par­tic­u­lar­ly in acute ill­ness. So, peo­ple treat­ing young peo­ple who have sur­vived can­cer or have chron­ic con­di­tions have recog­nised that they can’t have this dis­as­trous gap and have made attempts to close it. But for young peo­ple with chron­ic pain in par­tic­u­lar, there are very few spe­cial­ist pae­di­atric pain cen­tres so most of them will be seen by pae­di­a­tri­cians and pae­di­atric rheuma­tol­o­gists whose remit will stop around six­teen. And then adult pain ser­vices, who to be fair, are not always best equipped to deal with nine­teen year olds and their par­ents, because that’s usu­al­ly what hap­pens. So yes, to a degree we know about it as a ser­vice com­mu­ni­ty and peo­ple are try­ing to do some­thing about it. But it’s still a huge risk for some young peo­ple at some parts of the coun­try, there is this big ser­vice gap. 

Evans: So as a nation­al spe­cial­ist ser­vice, peo­ple from all over the UK could come to see you. 

Gilbert: That’s right. They need to have been well worked up by local pae­di­atric col­leagues for it to be con­vinc­ing­ly clear that peo­ple have done all the sen­si­ble and appro­pri­ate things that can be done local­ly. But after that point of view, NHS Eng­land takes the view that yes, if that’s been done, then after that point any region can refer to us. 

Evans: Now Amyra you’re sev­en­teen. And in terms of the health ser­vice now, you’re not an ado­les­cent, and you’re not an adult. It is a two year gap between six­teen and eigh­teen, where you’re a nothing. 

Amyra: It’s a very hard tran­si­tion, it’s very hard. They might have kept me on longer with the chil­dren side, but what hap­pened is the doc­tor said, ‘I can’t find out what’s wrong with you, bye-bye’. So, I moved on to the adults and I’ve still not ful­ly tran­si­tioned, I’ve been with adults for a year but it’s very hard because we’re so young, because they say, ‘Oh, the adult med­i­cine side can open every­thing for you.’ And it does­n’t. And espe­cial­ly being with chron­ic pain, and the chron­ic pain ser­vice is hard when you’re sat amongst eighty year olds, and you’re sev­en­teen and peo­ple don’t get [to grips with the fact] that young peo­ple can have pain too. So, for me, I find it very hard, I pre­fer being in the children’s side. 

Gilbert: We’ve always had an eleven to eigh­teen ado­les­cent pro­gramme. But then we realised that there was a group of young adults, peo­ple in their ear­ly twen­ties, who’d had pain since ado­les­cence, [and were] real­ly super strug­gling, [who] nev­er real­ly man­aged to get beyond their par­ents’ house. In a sense, it’s hard enough, I think in these days to get a job and be inde­pen­dent [and] if you’ve got a pain prob­lem as well, it’s dou­ble tricky. And they did­n’t seem to fit too well on a stan­dard adult pro­gramme. You know, the demo­graph­ics are pret­ty con­sis­tent, it’s usu­al­ly peo­ple in their for­ties and fifties, with back pain who’ve kind of had a life to a degree. And then we have these twen­ty-one, twen­ty-two year olds who just did­n’t seem in the same place, but weren’t chil­dren any­more. So we run young adult pro­grammes for as it were, the eigh­teen to thir­ty range as well. So we like to think we can do the tran­si­tion work all the way through. 

Evans: That’s Dr Jere­my Gaunt­let-Gilbert, Prin­ci­pal Clin­i­cal Psy­chol­o­gist at the Bath Cen­tre for Pain Ser­vices, and you can find more about them and the ser­vices they offer at their web­site which is: bathcentreforpainservices.nhs.uk, and as always, I’ll remind you the small print that whilst we in Pain Con­cern believe infor­ma­tion and opin­ions on Air­ing Pain are accu­rate and sound based on the best judg­ments 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. Don’t for­get that you can down­load all addi­tions of Air­ing Pain from Pain Concern’s web­site which is: painconcern.org.uk. And from the web­site you can tap into all the sup­port leaflets and infor­ma­tion on man­ag­ing your chron­ic pain, includ­ing details of Pain Mat­ters Mag­a­zine, which is now avail­able in elec­tron­ic and of course paper for­mat. So, to end this edi­tion of Air­ing Pain record­ed on the last day of a young per­son­’s pain man­age­ment pro­gramme at the Bath Cen­tre for Pain Ser­vices. What’s the ver­dict? Parents? 

Bai­ley: It’s made her realise [that it’s] not always, ‘I can’t do’, it has made her think, ‘Well yeah, per­haps I can do this’. It has helped me realise that I need to step back, because as a par­ent when your child is in pain you want to basi­cal­ly wrap them up in cot­ton wool. 

McCann: Tay­lor and I are extreme­ly close any­way. But it’s giv­en us both ways to artic­u­late our­selves to each oth­er, espe­cial­ly [in] that role play yes­ter­day, I think all the young peo­ple seen how they act­ed by some­body else act­ing like that, I think opened every­body’s eyes, adults and young peo­ple as well. 

Bai­ley: It’s a hard course – men­tal­ly it’s hard – it’s drain­ing. But what I would say is that to all chil­dren who are lis­ten­ing to this, stick it out, because my daugh­ter could have quite eas­i­ly have walked, you know, a few times dur­ing the course where she start­ed talk­ing about how she did­n’t like it, but she stuck it out and she’s ben­e­fit­ed from it. 

Evans: So that’s what the par­ents think of it, what about the young peo­ple? Do bear in mind Jere­my Gaunt­let-Gilbert’s rule of thumb from the start of this edi­tion of Air­ing Pain

Gilbert: They usu­al­ly as you can imag­ine arrive fair­ly ner­vous and ter­ri­fied into the group. And one of our mea­sures of suc­cess is the amount of noise and row­di­ness we can achieve by week three. 

Evans: When I came here this morn­ing, and went into what I guess is your com­mon room, you were on one of these big inflat­able balls, I won’t say you were com­plete­ly out of it. 

Amyra: [Laugh] how do I explain that? 

Tay­lor: I don’t know, just, we were mess­ing about but at the same time… 

Amyra: I was in my Zen, it was calming. 

Tay­lor: Yeah. 

Amyra: It was calm­ing just sit­ting on the ball. 

Evans: So, you were using a relax­ation, you say Zen – relax­ation, visualisation. 

Amyra: How did we get on a ball and it turned out to be relax­ing? [laugh­ing] 

Con­trib­u­tors: 

  • Dr Jere­my Gaunt­let-Gilbert, Prin­ci­ple Clin­i­cal Psy­chol­o­gist at the Bath Cen­tre for Pain Services 
  • Louise Bai­ley, parent 
  • San­dra McCann, parent 
  • Amyra, young person 
  • Tay­lor, young person. 

More infor­ma­tion: 

Tran­scribed by Owen Elias 

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