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Transcript – Programme 59: Pain in the Family: Young adults 1 of 2

The expe­ri­ences of young peo­ple whose fam­i­ly is affect­ed by pain and a cam­paign to help improve their lives

To lis­ten to this pro­gramme, please click here.

Lost child­hood, finan­cial bur­den, emo­tion­al tur­moil and guilt – these are some of the chal­lenges fac­ing young peo­ple who care for peo­ple in pain on top of the car­ing itself. They’re often left feel­ing invis­i­ble, going unrecog­nised and unsup­port­ed for years.

In the first of two pro­grammes putting young car­ers cen­tre stage, Paul Evans talks to a fam­i­ly about how pain has affect­ed their lives. Erin McGuigan was hos­pi­talised after devel­op­ing debil­i­tat­ing pain in her limbs and now uses a wheel­chair and crutch­es. She explains how her con­di­tion has affect­ed her broth­er and sis­ters. Her sis­ter, Don­na, talks mov­ing­ly of her feel­ings of pow­er­less­ness, how she has encour­aged Erin, and the need to keep lis­ten­ing and understanding.

Ter­ri Smith a Mem­ber of the Scot­tish Youth Par­lia­ment (MSYP), explains why and how she is cam­paign­ing to improve the sit­u­a­tion for young car­ers. Hours of freely-giv­en care save the Scot­tish Gov­ern­ment £1.4 bil­lion a year, but often leave young peo­ple strug­gling to stay in edu­ca­tion and finan­cial­ly insecure.

Issues cov­ered in this pro­gramme include: Young peo­ple and chil­dren, fam­i­ly, rela­tion­ships, eco­nom­ic impact, school, edu­ca­tion, young car­ers, finan­cial sup­port, foot pain, peer sup­port, pol­i­cy, leukaemia, finan­cial sup­port and trav­el cost.

Paul Evans: You’re lis­ten­ing to Air­ing Pain, a pro­gramme brought to you by Pain Con­cern, a UK based char­i­ty work­ing to help sup­port and inform peo­ple liv­ing with pain and health­care professionals.

Chron­ic or per­sis­tent pain has no cure, unman­aged it impos­es a huge bur­den of suf­fer­ing, dev­as­tat­ing the lives, not just of the per­son with the pain, but the whole fam­i­ly. In this, the first of two pro­grammes fund­ed by The City of Edin­burgh Coun­cil and NHS (Nation­al Health Ser­vice) Loth­i­an through their self-direct­ed sup­port inno­va­tion fund, I’ll be look­ing at issues faced by the often invis­i­ble or for­got­ten mem­bers of those fam­i­lies: the chil­dren and sib­lings of those with pain – their young adult carers.

Erin McGuigan: Because I was the one suf­fer­ing, he didn’t want to draw any atten­tion to him­self. You know, every­body was so focused on try­ing to help me and sup­port me, but maybe he need­ed more sup­port really.

Ter­ri Smith: Young peo­ple are com­pro­mis­ing being young peo­ple by hav­ing car­ing respon­si­bil­i­ties. They save the Scot­tish Gov­ern­ment £1.6 bil­lion annu­al­ly. Car­ing shouldn’t mean com­pro­mise and we should be sup­port­ing young car­ers finan­cial­ly through­out their lives.

Don­na McGuigan: When she was in hos­pi­tal I was there vis­it­ing almost every night and I felt like I couldn’t do enough, you know, cos I couldn’t take the pain away. So I sup­pose I did have to dis­tance myself a wee bit. It was too hurt­ful, you know, to be there but not to take the pain away.

Evans: Just some of the bur­dens faced by young peo­ple when chron­ic pain enters the home. The pain, of course, lost child­hood, finan­cial bur­den, emo­tion­al tur­moil and, dare I say it, guilt. All at a time when bod­ies and minds are going through the upheaval of grow­ing into adulthood.

Erin McGuigan has three sis­ters and one younger broth­er. She’s had chron­ic pain for around four years, since she was six­teen. I met her at her Edin­burgh home with mum Lor­na and old­er sis­ter Don­na. This is their sto­ry, start­ing with Erin.

E McGuigan: I just got it, just out of the blue, I was fit and healthy and I was walk­ing one day and sud­den­ly had a pain in my foot and it just devel­oped from there. And then grad­u­al­ly I wasn’t able to weight bear on my foot and it was very cold and dis­coloured and then I had that for a few months and then it spread­ed to my left arm as well and then it got worse and spread­ed to my right arm. And I was hos­pi­talised for about eight months and I wasn’t able to feed myself or get a drink or any­thing and had to get all care needs met by the nurs­ing staff.

It’s affect­ed all aspects of my life real­ly: it affect­ed my edu­ca­tion; social life… I use a wheel­chair most of the time but some­times I can man­age to walk with crutch­es but just for short dis­tances, before the pain gets real­ly bad.

Evans: Now some peo­ple talk about pain, when pain comes into a fam­i­ly, when some­body in the fam­i­ly has pain, some peo­ple talk about it hav­ing a rip­ple effect, like when you throw a stone into a pond and it rip­ples gen­tly out­wards. Has that hap­pened with your fam­i­ly, do you think?

E McGuigan: Yeah, I would say that it’s had an effect on all of us. More so on my broth­er, because he was liv­ing at home and a lot of the time we would have to vis­it hos­pi­tal at nights – he could wake up and me and my mum aren’t there because we’ve had to take a trip to the hos­pi­tal, things like that. A lot of the time my mum has to care for me, so she’s not got as much time to spend with him because she was car­ing for me. And emo­tion­al­ly it can be upset­ting see­ing fam­i­ly mem­bers in pain and not being able to help. Lots of times he has to admin­is­ter med­ica­tion to me and he’s good and he’s under­stand­ing but when we went to Bath he had to just live on his own for three weeks real­ly. There’s times when we have to go to the hos­pi­tal and some days he can wake up and we’ve had to go to the hos­pi­tal in the night, so it can be lone­ly for him.

Evans: Mum, the rip­ple effect, was it a ripple?

Lor­na McGuigan: It was a bit of a tsuna­mi [laugh­ter]! I had to take three months off my work to care for Erin ini­tial­ly. And the effect, as she says, on her broth­er and sis­ters: we didn’t have as much time for them; they didn’t know where we were a lot of the time when we were vis­it­ing hos­pi­tals. Finan­cial­ly as well it had a huge effect: we had to sell our house and adapt this house for Erin’s needs. She now has full time care in place, so she has car­ers in the house, so that in itself has an impact on the oth­er fam­i­ly mem­bers and there not as at ease in their own house as they should be.

E McGuigan: It can change your per­son­al­i­ty a lot and when you’re suf­fer­ing pain you might snap at your fam­i­ly when you don’t mean to. You feel frus­trat­ed and you might take it out on your fam­i­ly, so it can affect the rela­tion­ship as well. But in a sense it can also bring your fam­i­ly clos­er togeth­er because you know that you’re all there to sup­port each other.

Evans: Don­na you’re Erin’s sis­ter – you’ve known Erin before the pain – what changes have you noticed in her?

Don­na McGuigan: I think she lost a lot of her life. She’s not had a nor­mal teenage life. She missed out on a lot of her teenage years. She was always very bub­bly, you know and always very ener­getic. And now she can’t do a lot of the things that she could do before. And she was always very, very patient as well – she does suf­fer from frus­tra­tion because of her lim­i­ta­tions, because of the pain, like she’ll be say­ing she has to pace her­self. And some­times it’s under­stand­ing that, if you are out or if you are doing things, under­stand­ing how she feels and that the pain is impact­ing her. She could be tired but she holds back, she wants to be involved and make the most of the sit­u­a­tion and her life, because that’s the kind of per­son she is.

Evans: She must be very frus­trat­ed, but you must be very frus­trat­ed as well?

D McGuigan: It is…it’s hor­ri­ble, [cry­ing] nobody deserves that, nobody deserves to go through what she’s been through.

Evans: Mum how do you hold the fam­i­ly together?

L McGuigan: Just got to keep going [laughs]! I think it’s very hard: when it’s an ill­ness that you can see a cure for, you can see a way for­ward; when you’re diag­nosed with chron­ic pain you think this is it for the rest of her life and there didn’t seem to be any way for­ward at that point.

Evans: Don­na has obvi­ous­ly told us now of the effect and the effect is com­ing out now. How have you coped with that?

L McGuigan: Some days I’ve not! [laughs] Some days we’ve all strug­gled to cope with what’s hap­pened to Erin, but you just have to keep going, you just have to believe that what you’re doing is right. I know some­times, I’ve not been there for the oth­er kids – I have anoth­er three kids – and I know some­times I’ve not been able to sup­port them when they’ve need­ed sup­port. And some­times I’ve always put Erin first, that’s dif­fi­cult as well as a moth­er, to know that your oth­er kids maybe need you and you’re not able to be there for them, that’s hard.

Evans: The Bath Cen­tre for Pain Man­age­ment Ser­vices, part of the Roy­al Nation­al Hos­pi­tal for Rheumat­ic Dis­eases, pro­vides res­i­den­tial pain man­age­ment pro­grammes for ado­les­cents with chron­ic pain, like Erin. You can down­load Air­ing Pain pro­gramme 10, from painconcern.org.uk to hear more about it.

Patients attend for three weeks, with an accom­pa­ny­ing adult, usu­al­ly a par­ent. Erin’s mum Lor­na again:

L McGuigan: I was deter­mined Erin would get all the help she could get and I pushed and pushed for her to get to go to Bath. I didn’t real­ly realise the finan­cial impli­ca­tions of fly­ing down there, being away from home for three weeks at a time; the impli­ca­tions of walk­ing out of your work for three weeks. It is a mas­sive impli­ca­tion on the fam­i­ly, leav­ing behind your fam­i­ly, leav­ing your work for three weeks and just walk­ing out the door and con­cen­trat­ing on one child. And using all your sav­ings for flights and taxis… [laughs] that was a huge thing. I think mov­ing for­ward hope­ful­ly peo­ple won’t have to trav­el as far in the future and that would be such a good thing, a pos­i­tive thing.

Evans: Now Erin’s had help through the res­i­den­tial pain man­age­ment pro­gramme in Bath, but that still leaves four oth­er chil­dren who should get sup­port. Have they had sup­port, oth­er than from you?

L McGuigan: No. Gran and Grandad are very good and they all pull togeth­er. We went down to Bath – it’s hard leav­ing your broth­er and sis­ters behind. Don­na came down for a week­end, Ker­ry cam down for a week­end to spend time with her, but it was very hard on them. And I was very lucky – lucky is the wrong word – that they were old­er; I don’t know how I would have done it if I’d had younger chil­dren. I don’t know how I would have coped if I had younger chil­dren. But you expect because they’re old­er that they’ll just deal with it, but it was hard on them as well.

Evans: Don­na, what sort of help do you think you could’ve had?

D McGuigan: I think it’s more under­stand­ing the dai­ly bat­tle Erin has to face and under­stand­ing the con­di­tion. Like my mum said at the time, when she first suf­fered from chron­ic pain, nobody knew, the med­ical pro­fes­sion didn’t even know, how she could man­age it bet­ter. So it’s under­stand­ing what she’s going through. There are times when she needs encour­age­ment, as every­body does, and there are times when she needs to be left just to take it at her own pace, just to take it easy. So it’s under­stand­ing that to be honest.

Evans: Yes, but you keep on talk­ing about Erin, not about you and your broth­ers and sis­ters. What help do young adult car­ers like you need?

D McGuigan: You’re ask­ing the wrong person.

Evans: No, I’m ask­ing the right person.

D McGuigan: Yeah, I sup­pose at the time when Erin was in hos­pi­tal, if you were talk­ing to peo­ple like your peers or out­side of fam­i­ly, they couldn’t con­tem­plate what it was we were going through, so I sup­pose speak­ing to oth­er peo­ple who were going through the same thing would offer com­fort and support.

Evan: There are an esti­mat­ed 100,000 young car­ers like Don­na and her broth­ers and sis­ters in Scot­land alone, many of whom are self­less­ly help­ing oth­ers with­out a thought for them­selves. Don­na has high­light­ed the impor­tance of social and peer sup­port. But young adult car­ers, par­tic­u­lar­ly those in low income fam­i­lies, also face finan­cial bar­ri­ers. These are issues being addressed by the Scot­tish Youth Par­lia­ment Care Fair Share cam­paign. Ter­ri Smith is MSYP, that’s mem­ber of the Scot­tish Youth Par­lia­ment, for Edin­burgh and North­ern Leith.

Ter­ri Smith: Care Fair Share has got three objec­tives, the first ones about mak­ing the Edu­ca­tion Main­te­nance Allowance… a bit more clar­i­ty in the word­ing that the Scot­tish Gov­ern­ment give guid­ance to the local author­i­ties, so we are just look­ing at mak­ing that stronger and more clar­i­fied, so local author­i­ties imple­ment it as well. Our sec­ond objec­tive is about mak­ing a bur­sary avail­able to young car­ers, to those who are at col­lege or uni­ver­si­ty. The third part is for trav­el con­ces­sion, mak­ing it more avail­able to young car­ers, so it’s cheap­er ‘cos they have to get from A to B, if they’re in finan­cial hard­ship they may find that difficult.

Evans: So, going back to objec­tive one, an Edu­ca­tion Main­te­nance Allowance, what does that mean?

Smith: It’s a £30 pay­ment that young peo­ple receive every week for attend­ing school or college.

Evans: Now that sounds like a very good thing, but from what I remem­ber the rules for hav­ing that were quite strict on attendance?

Smith: Yeah, it requires a hun­dred per cent atten­dance for you to receive your EMA pay­ment, which is giv­en fortnightly.

Evans: It seems to me that a young car­er can’t guar­an­tee a hun­dred per cent atten­dance [No] because he or she will have car­ing duties.

Smith: Of course, some­times they’ll miss the odd class at school, or full day, or even being late for school, again, takes away your hun­dred per cent atten­dance, so they’re los­ing that valu­able payment.

Evans: That doesn’t seem fair does it?

Smith: No it’s not fair, espe­cial­ly when it con­tributes to the house­hold income, which a lot of low income fam­i­lies rely on. ‘Cos EMA is giv­en pri­mar­i­ly to low income fam­i­lies, so again it’s a huge impli­ca­tion on them and it just doesn’t seem fair that if they miss the odd day or the odd class, or they’re late, that entire payment’s gone. It’s an invalu­able thing to young car­ers who are strug­gling finan­cial­ly. A lot of par­ents rely on the young per­son get­ting that mon­ey from going to school or col­lege. So when they’re los­ing out on that it’s putting more strain on the fam­i­ly them­selves and it’s not exact­ly ide­al when they’ve got enough to deal with. So it’s like imper­a­tive that young peo­ple are still get­ting that mon­ey, I think schools should take into con­sid­er­a­tion, you know, they’ve got extra needs to the aver­age young per­son, so it’s an invalu­able ser­vice really.

Evans: Is this some­thing you’ve addressed with MSPs?

Smith: Yeah, we addressed the clar­i­fi­ca­tion of the word­ing of the guide­line doc­u­ments that the Scot­tish Gov­ern­ment give to local author­i­ties, asked for clar­i­fi­ca­tion around the word­ing of what was required for EMA, and we achieved that, which was objec­tive one of the cam­paign. So now the MSYPs are being asked to go out and con­sult with their local coun­cil­lors and local author­i­ties and ask­ing them to imple­ment these guide­lines. So my job, along with the oth­er eleven Edin­burgh MSYPs, will be to speak with the City of Edin­burgh Coun­cil and urge them to sup­port it and imple­ment them.

Evans: Do you have a long term con­di­tion yourself?

Smith: Yeah I do, indeed, yeah. I’ve got leukaemia. I have all sorts of things, I’ve got lung prob­lems as well, so it’s just some­thing that I’ve dealt with for the last four or five years.

Evans: So how does that impact on your family?

Smith: I’m for­tu­nate enough that I don’t face finan­cial bar­ri­ers, which I’m thank­ful for, but the stress upon my younger sib­lings, it has a knock on effect on them, you know, hav­ing to miss going out to their friends dur­ing the week because my mum needs some­one to look after me, because she can’t do it, she has to work. That com­pro­mise that they have to make is quite hard hit­ting, but yeah I see that on a dai­ly basis.

Evans: What do you see?

Smith: My sis­ter is fif­teen so she should be out liv­ing her life, going out with friends, the same as I did. I didn’t have that bur­den of hav­ing to look after old­er sib­lings, so I take my hat off to her and every young per­son that’s a young carer.

Evans: What sort of help and sup­port do you think she needs?

Smith: Just that free time to go out and be a young per­son real­ly, I mean she does lack that sup­port. I don’t think she iden­ti­fies her­self as a young car­er. I do tell her, you know, you are a young car­er, you have car­ing respon­si­bil­i­ties, but she just sees her­self as, ‘well I’m help­ing my fam­i­ly’. She sees it as an oblig­a­tion, yeah…she feels like she needs to do it because I’m her sis­ter. Some­times I wish she didn’t have to do it, but…

Evans: And that sort of respon­si­bil­i­ty is very much unseen isn’t it, peo­ple just take it, it’s not an oblig­a­tion to look after your fam­i­ly [no]; it’s some­thing that’s there and per­haps peo­ple out­side that fam­i­ly don’t realise the help that they need.

Smith: Yeah that’s right, her school don’t know she’s a young car­er, a lot of peo­ple don’t know she’s a young car­er and that’s a prob­lem as well with young car­ers isn’t it? The ones that we know about are self-iden­ti­fied, but there’s a lot of car­ers that no one knows about and again that’s an issue in itself.

Evans: Is that some­thing that the Care Fair Share cam­paign can address?

Smith: I think it’s been brought up a few times, par­tic­u­lar­ly when I met with The City of Edin­burgh Coun­cil, they brought up the issue of how we could iden­ti­fy young car­ers. We spoke about try­ing to do it through matric­u­la­tion and that type of thing, you know iden­ti­fy­ing them as soon as they come into the edu­ca­tion process, whether it be from pri­ma­ry to sec­ondary or up to col­lege, there should be some sort of process for try­ing to iden­ti­fy more. And let­ting young car­ers know what exact­ly is a young car­er because, again they don’t know because they per­haps don’t have the infor­ma­tion to say, well these are the qual­i­ties that a young car­er has.

Evans: Well that’s the thing isn’t it? I guess, as we’ve talked about, most young car­ers who go into school just don’t know they’re young car­ers, so you have to edu­cate them as well.

Smith: Yeah that’s true. I mean there’s 100,000 young car­ers in Scot­land, so that’s ten per cent of the school pop­u­la­tion and, again, that’s the ones we know about.

Evans: The sec­ond Care Fair Share objec­tive was look­ing to get bur­saries for young carers?

Smith: Yeah, par­tic­u­lar­ly young car­ers in col­lege and uni­ver­si­ties, who don’t per­haps come under the EMA guide­lines, so like loan pay­ments and stuff, so they’re get­ting a sub­stan­tial… dif­fer­ent amount of bur­sary. So, again, young car­ers could qual­i­fy as that, they are car­ing with a respon­si­bil­i­ty so we’re look­ing to expand on that towards them and giv­ing them that access.

Evans: Might be a strange ques­tion because my young days are well behind me: why would a young car­er need money?

Smith: Why would a young car­er need mon­ey? Well to do numer­ous things, go from A to B, go to appoint­ments with who­ev­er they’re car­ing for – I know my sis­ter, she accom­pa­nies me to hos­pi­tal appoint­ments and some­times I can’t pay her bus fare so she has to pay it her­self. But that type of thing you know, going from place to place; sup­port­ing the fam­i­ly… again, a lot of young car­ers I’ve spoke with, par­tic­u­lar­ly in my con­stituen­cy, their par­ents rely on the mon­ey they’re get­ting in to sup­port with whether that be the food or dif­fer­ent type of things, neces­si­ties of life that a lot of young car­ers rely on the mon­ey for.

Evans: When your sis­ter goes with you to hos­pi­tal appoint­ments, why is she going with you?

Smith: A lot of times I can’t go from places on my own, so I need some­one to be with me. So she’s that sup­port net­work that I feel like, my par­ents don’t like it but they have to give in and allow it to hap­pen, because there is no one else and we don’t want that sup­port from any­one else, we’d rather it was kept with­in the fam­i­ly, because it’s eas­i­er to main­tain that way instead of hav­ing to bring in oth­er people.

Evans: But sup­port can just mean company.

Smith: She’s good at keep­ing me com­pa­ny that’s for sure.

Evans: You’re smil­ing, why are you smiling?

Smith: Because she is, she’s great at what she does and it does make me smile.

Evans: Are you close?

Smith: Yeah of course, yeah. She’s just always there isn’t she?

Evans: Erin, do you under­stand what your broth­ers and sis­ters have been through?

E McGuigan: To an extent, yeah, but some­times they don’t always talk about it because it’s eas­i­er to just shut it off rather than talk about it. But when you’re in pain your­self it’s hard to see the peo­ple around you and the impact that it’s hav­ing on them because all you can think about is how dread­ful the pain is and some­times maybe you should make time to look at your broth­ers and sis­ters and chat with them and see how it real­ly is affect­ing them.

Evans: Well fam­i­ly ther­a­pists might say that there are two ways that pain in the fam­i­ly impacts on peo­ple with­out pain in the fam­i­ly and one is that it makes them dis­tance them­selves from the fam­i­ly, i.e. sends them away from the fam­i­ly and away from the pain; and the oth­er is that it brings them real­ly, real­ly tight in togeth­er. Don­na, which side do you think you fall on?

D McGuigan: A bit of both to be hon­est. I’ve dis­tanced myself and I’ve been very close to Erin some­times. I mean when she was in hos­pi­tal I was there vis­it­ing almost every night and it did have an impact on my life and I felt like I couldn’t do enough, you know ‘cos I couldn’t take the pain away. So, I sup­pose I did have to dis­tance myself a wee bit, it was too hurt­ful to be there but not to take the pain away and solve the problem.

L McGuigan: I think one of the impor­tant mes­sages I got from Bath was that this is not an ill­ness, she’s not ill. Where­as I think as a par­ent you tend to wrap them in blan­kets and get every­thing for them, do every­thing for them till they’re bet­ter – it’s a nat­ur­al instinct – until they’re bet­ter and they can do it for them­selves. It was accept­ing that this is a change in lifestyle, she wasn’t ill but she had a change in cir­cum­stances and we had to learn to cope with it and I had to then take a step back and let her go and let her do things instead of say­ing, ‘oh, she can’t do that she’s in a wheel­chair’. I had to say, ‘she’s in a wheel­chair – so what! It’s up to oth­er peo­ple to make it pos­si­ble for her’. [Laugh­ter] I think that’s the big thing.

E McGuigan: You weren’t alone in cop­ing with the con­di­tion, you were there as a fam­i­ly and it was how you were going to cope as a fam­i­ly, rather than the per­son cop­ing on their own. And we had lots of ses­sions where me and my mum were togeth­er and before we wouldn’t talk about it and I would get frus­trat­ed at her and she would get frus­trat­ed at me, but one of the main things we got from hav­ing the right sup­port was that we were able to open to each oth­er and talk about it. And some­times it could be upset­ting, some­times it wasn’t, but it still always helped us to get it off our chests, how we were feel­ing and what we thought, rather than just clos­ing in and not talk­ing to each oth­er and dis­cussing it with each other.

Evans: And you fol­lowed through the same prin­ci­ples with your broth­er and sisters?

E McGuigan: Not as much, espe­cial­ly my broth­er who it prob­a­bly had the biggest impact on because he was liv­ing at home. Rather than draw atten­tion to it, his the­o­ry was just try­ing to take the atten­tion of it and rather than me and him dis­cussing it he always tries to come in and cheer me up and light­en the sit­u­a­tion. He doesn’t dis­cuss it very much, I feel as though he just sort of dealt with it on his own, very much so him… he closed in and didn’t real­ly talk to any­body about it and prob­a­bly strug­gled him­self rather than talk­ing to people.

But some­times it’s dif­fi­cult to approach the sit­u­a­tion and think how you’re going to bring the top­ic up and dis­cuss it with your fam­i­ly, because I was the one suf­fer­ing he didn’t want to draw any atten­tion to him­self. You know, every­body was so focused on try­ing to help me and sup­port me, but maybe he need­ed more sup­port really.

Evans: He’s too shy to speak to us today.

E McGuigan: Yeah [laugh].

Evans: The third objec­tive of the Care Fair Share cam­paign by the Scot­tish Youth Par­lia­ment is to do with finan­cial sup­port for travel?

Smith: Yeah, it’s about reduc­ing the cost of trav­el for young car­ers. I know that if you’re in doing a sub­stan­tial amount of vol­un­tary work and your place of vol­un­teer­ing writes a let­ter to say that you’re vol­un­teer­ing you get reduced trav­el. So in my eyes, and a lot of the Scot­tish Parliament’s eyes, young car­ers are vol­un­teers them­selves; you know, every year they save the Scot­tish Gov­ern­ment £1.6 bil­lion annu­al­ly. I think that’s a huge fig­ure that sticks in my mind all the time, but again they are effec­tive­ly vol­un­teer, they’re vol­un­teer­ing their time, their ser­vice, their love. I under­stand that it’s for their fam­i­ly, but they’re doing a huge thing for soci­ety, so undoubt­ed­ly I think they should be giv­en that help towards their trav­el, like my sis­ter who helps me going from one appoint­ment to anoth­er, so reduc­ing that finan­cial bur­den would be a huge, huge thing for young car­ers in Scotland.

Evans: Do you think it’s fair that young car­ers save the Scot­tish tax­pay­er £1.6 billion?

Smith: No, I think it’s an injus­tice. It’s a huge amount of mon­ey, that sort of mon­ey could be used to help to sup­port them in their roles and giv­ing them bet­ter finan­cial prac­tices like the cam­paign is call­ing for.

Evans: So who in the Scot­tish Par­lia­ment is lis­ten­ing to you?

Smith: I’ve met with my local MSP, Mal­colm Chisholm, he’s a huge sup­port­er of the cam­paign, he’s signed our Care Fair Share pledge board. I know oth­er MSYPs have met with their local MSPs in the par­lia­ment. I know some peo­ple have met with their MP as well, met with coun­cil­lors, a huge num­ber of par­lia­men­tary peo­ple as well have met with us and are very sup­port­ive of the cam­paign, yeah.

Evans: And you think you are being tak­en seriously?

Smith: Undoubt­ed­ly we are being tak­en seri­ous­ly, yeah.

Evans: Now this Care Fair Share cam­paign lasts a year, what do you hope to have achieved by the end of the year?

Smith: To make lives of young car­ers in Scot­land bet­ter, that’s the ulti­mate goal of the cam­paign. So whether we achieve one objec­tive or all three I think just bring­ing the cam­paign to light, bring­ing it to people’s atten­tion, it being in the media, is doing that again. But, fun­da­men­tal­ly, to make young car­ers’ lives better.

Evans: So if I’m look­ing after the pub­lic purse in Scot­land, what do I need to know that will send me away and write a cheque?

Smith: Send you away and write a cheque? Young car­ers save the Scot­tish Gov­ern­ment 1.6 bil­lion annu­al­ly and ulti­mate­ly young peo­ple are com­pro­mis­ing being young peo­ple by hav­ing car­ing respon­si­bil­i­ties, so by lift­ing the finan­cial bur­dens on them, then that’s tak­ing away some of the com­pro­mise and allow­ing them to be young peo­ple and that’s fun­da­men­tal­ly what they should be doing. Yes they can care, but yes they can be young peo­ple at the same time. Car­ing shouldn’t mean com­pro­mise and we should be sup­port­ing young car­ers finan­cial­ly through­out their lives.

Evans: Car­ing shouldn’t mean compromise.

Smith: Yeah that’s right.

Evans: That was Ter­ri Smith, Mem­ber of the Scot­tish Youth Par­lia­ment, talk­ing about their Care Fair Share cam­paign. And you’ll get more details from their web­site, which is SYP, that’s Scot­tish Youth Par­lia­ment, SYP.org.uk

Now Pain Con­cern has also launched spe­cif­ic ser­vices to sup­port young adult car­ers, through its forum, where you can con­nect with your peers, arti­cles in Pain Mat­ters mag­a­zine and infor­ma­tion leaflets. All con­tact details are at our web­site which is painconcern.org.uk

I have to remind you that whilst Pain Con­cern believes 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 health 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.

Don’t for­get that you can still down­load all edi­tions of Air­ing Pain, includ­ing num­ber ten about the Bath pain man­age­ment cen­tre pro­gramme for young adults, from the web­site or you can obtain CD copies direct from Pain Concern.

Con­tin­u­ing our sup­port for young adult car­ers, the next edi­tion of Air­ing Pain will look at how with the right pro­fes­sion­al sup­port young adult car­ers and their fam­i­lies can­not just sur­vive, but thrive, when pain is amongst them.

Don­na, you’re Erin’s sis­ter, now you’re the expert in this because you’ve been through it, what advice would you offer to oth­er people?

D McGuigan: Talk and lis­ten to each oth­er and offer com­pas­sion when things don’t go right and under­stand­ing. But I think the most impor­tant thing is to talk to the per­son who is suf­fer­ing from chron­ic pain and try and under­stand their sit­u­a­tion and their needs. One of the con­ver­sa­tions we did have when she first became ill was when I told her that she will get through it and I nev­er said it will go away or it will get bet­ter, or it will… but I told it will get bet­ter, it wouldn’t always be like this and said it and I made that promise to her, because I know her and I know she would have got through it ‘cos I know her character.

Life will nev­er be what it was when she was six­teen, but I think she is gonna be an amaz­ing, amaz­ing woman, based on the expe­ri­ences that she’s had and how she can apply her­self. And her life isn’t always going to be easy but I do think that she is going to make the most of it and she’ll be hap­py and set­tled and she’ll just be fan­tas­tic and I know that about her and I knew that about her then. At that time nobody could have said what her life was going to end up like, nev­er said she would end up walk­ing again, but deep down I knew she had it in her to pull through and come through to where she is now, and she has.

Evans: Are you a strong family?

D McGuigan: Yeah.

Evans: And do you get on?

D McGuigan: Yeah we do… apart from when we’re argu­ing over hairdry­ers and make up and clothes [laugh­ter].


Con­trib­u­tors:

  • Erin McGuigan
  • Don­na McGuigan, young carer
  • Lor­na McGuigan, Erin’s mother
  • Ter­ri Smith, MSYP for Edin­burgh and North­ern Leith.
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