Information & Resources

Find information and resources to help manage your pain.

Get Help & Support

Find the tools you need to
help you manage your pain.

Get Involved

Help make a real difference to people
in the UK living with chronic pain.

About Us

Find out about Pain Concern and how
we can help you.

Transcript — Airing Pain 132: When Children Have Arthritis

How do you iden­ti­fy ill­ness in young chil­dren and cop­ing as a family.

This Air­ing Pain was record­ed at the Scot­tish Net­work for Arthri­tis in Chil­dren SNAC’s 2022 Fam­i­ly Week­end at Crieff Hydro, which brings togeth­er fam­i­lies recent­ly affect­ed by juve­nile idio­path­ic arthri­tis and some of the country’s lead­ing pae­di­atric rheuma­tol­ogy experts. 

To lis­ten to the pro­gramme please click here.


Issues cov­ered in this pro­gramme include:

juve­nile idio­path­ic arthri­tis, autoim­mune dis­ease, cop­ing as a fam­i­ly, rheuma­tol­ogy, pae­di­atrics, sup­port net­worksiden­ti­fy­ing ill­ness in young chil­drenmove­ment and exer­cise, steroids.


Con­trib­u­tors:

  • Par­ents (and their chil­dren) of 23 chil­dren between the ages of 5 and 14 who have juve­nile idio­path­ic arthritis.
  • Sharon Dou­glas — SNAC (Scot­tish Net­work for Arthri­tis in Chil­dren) chair­per­son & co-founder.
  • Julie Dun­can – Gen­er­al Pae­di­a­tri­cian NHS Loth­i­an Dis­trict Gen­er­al Rheuma­tol­ogy Clinic.
  • Vanes­sa Rai­mon­do — Rheuma­tol­ogy Nurse based in Edinburgh.
  • Ali­son Ross – Children’s Arthri­tis Nurse work­ing in Aberdeen.
  • Jo Walsh – Pae­di­atric Rheuma­tol­o­gist based in Glas­gow, work­ing as part of SPARN (Scot­tish Pae­di­atric and Ado­les­cent Rheuma­tol­ogy Network).

Paul Evans:

This is Air­ing Pain, a pro­gramme brought to you by Pain Con­cern, the UK char­i­ty pro­vid­ing infor­ma­tion and sup­port for those of us liv­ing with pain and for those who care for us. I’m Paul Evans. And this edi­tion of Air­ing Pain is sup­port­ed with Grants from Tre­foil House, the New Park Edu­ca­tion­al Trust and WCH Trust for Children.

Sharon Dou­glas:

[Over the back­ground noise of the conference]

Can every­one hear me? Hi guys, if you just bring your chil­dren to the dif­fer­ent age groups that they are meant to be in. Thank you.

[Male voice and Dou­glas call out direc­tions to atten­dees as to where to gath­er in the con­fer­ence hall by age]

Evans:

In March this year, that’s 2022, at the time of record­ing, SNAC – that’s the Scot­tish Net­work for Arthri­tis and Chil­dren – brought togeth­er fam­i­lies affect­ed by Juve­nile Idio­path­ic Arthri­tis – JIA – and some of Scotland’s lead­ing pae­di­atric rheuma­tol­ogy experts for a week­end at Crieff Hydro Hotel in rur­al Perthshire.

So, SNAC Chair­per­son and Co-Founder, Sharon Dou­glas, wel­comes twen­ty-three fam­i­lies, includ­ing the par­ents of twen­ty-three chil­dren, between the ages of eight and ten who have JIA and their two- to four­teen-year-old siblings.

Dou­glas:

It’s been so nice to be back and wel­come everyone.

Many fam­i­lies have been booked on this week­end for two years and it’s so nice that we’ve final­ly got back at Crieff and are run­ning our fam­i­ly week­ends again. I think this is about our thir­teenth week­end so it’s been nice to keep that tra­di­tion going and I hope every­one has a won­der­ful time.

The main thing is that we all meet peo­ple, we chat, we find out more about JIA, our kids give each oth­er tips. The kids will get some fun but they will also meet oth­er chil­dren like them and they’ll know that they’re not the only child with arthri­tis which is, for me, the main aim of the week­end. That they make some friends, realise ‘It’s not only me’, but also meet their clin­i­cians and hos­pi­tal staff in a friend­ly, relaxed envi­ron­ment and have – make sure that you sit with the clin­i­cian at lunchtime, or any­one else, just – they’re here to have a week­end with us too and they nor­mal­ly feel in the clin­ic [that] it’s so rushed and it’s so busy so it’s nice to have time to just chat with fam­i­lies over lunch, and every­thing else, and nice for your chil­dren to see them in a dif­fer­ent setting.

So, if you recog­nise your rheuma­tol­ogy pro­fes­sion­al here at the week­end make sure you say hel­lo to them. So, we’re even more grate­ful for them for their time this week­end and putting the pro­gram togeth­er because although the SNAC Com­mit­tee, can do lots, we can’t actu­al­ly do the edu­ca­tion part because all of SNAC Com­mit­tee are par­ents with JIA so we all know what it means to have a child with arthri­tis but what we can’t help with is the edu­ca­tion part so it’s so vital that they come and help us with that.

So, our main aim for this week­end is for the kids to have a ball and to meet oth­ers and for you guys to do the same.

Child speak­ing to anoth­er child:

Do you lie to me? Did you lie …? [laugh­ter]

Evans:

What’s he doing?

Child 1:

Laser tag.

Evans:

So, how’s that work?

Child 1:

[Noise of ‘shoot­ing’ in the background]

So, you’ve got these guns and you have to reload you have to shoot, like, the oth­er team. It’s like real­ly fun because you get to, like, run around and you get to like shoot every­body. But it’s just pret­ty much real­ly fun.

Evans:

So what team are you on?

Child 1:

I’m Team Blue, definitely.

Evans:

Team Blue – and Team Blue are winning?

Child 1:

I’m not so sure about that but, we’ll see. I think we’re real­ly good though ‘cause, you know, we can run much faster.

Evans:

Are you enjoy­ing yourself?

Child 1:

Yes, I’m enjoy­ing myself very, very much.

Evans:

Good, see you later.

Child 1:

See you later.

Evans:

There are many ways to have a ball and laser tag is just one of them. Those activ­i­ty ses­sions were inte­gral to the form of the weekend.

For the edu­ca­tion­al com­po­nents the group was divid­ed four ways by age. So, the par­ents, the five- to eight-year-olds, the nine and tens and then the eleven-plus­es. Each group had its own age-appro­pri­ate work­shops deliv­ered by spe­cial­ist clinicians.

The par­ents’ intro­duc­tion to JIA was giv­en by Julie Dun­can. She’s one of the Gen­er­al Pae­di­a­tri­cians in NHS Loth­i­an Dis­trict Gen­er­al Rheuma­tol­ogy Clin­ic and also in Edinburgh.

Julie Dun­can:

[Address­ing the conference]

Juve­nile Idio­path­ic Arthri­tis means that you’ve got inflam­ma­tion in your joints occur­ring before your six­teenth birth­day. The ‘idio­path­ic’ means we don’t know why some chil­dren get it. We know that there’s some trig­ger fac­tor. Some infec­tion can trig­ger arthri­tis. Some peo­ple have got a genet­ic sus­cep­ti­bil­i­ty but we don’t real­ly know why one par­tic­u­lar child will devel­op arthri­tis at any giv­en time.

And then the arthri­tis is pain and swelling with­in your joints and it has to be there for at least six weeks because chil­dren can get swollen joints because they’ve injured them­selves or they’ve had an acute infec­tion and they get a bit of a swollen joint that might just last a cou­ple of weeks and then set­tle down.

And it’s also exclud­ing oth­er caus­es of joint swelling. So, some chil­dren who might have a con­di­tion called haemophil­ia, [mean­ing] you can bleed into your joints so that could cause swollen joints. Or you can get infec­tion in your joints and that can cause them to be swollen, so there’s oth­er rea­sons that you can have swollen joints and most of the inves­ti­ga­tions that we do ini­tial­ly are to make sure that there’s not oth­er con­di­tions that are present and that it is Juve­nile Arthritis.

It’s an autoim­mune dis­or­der and it’s when the immune sys­tem is unable to recog­nise the joint as part of them­self. The body is attack­ing the syn­ovi­um which is with­in the joint. That’s the bit that pro­duces this sort of oily lubri­cant and that should just be like love­ly and free-flow­ing so that your knee can bend eas­i­ly. But, when you devel­op arthri­tis, you get inflam­ma­tion with­in that syn­ovi­um and it becomes an angry, hot, swollen joint. And the joint can become stiff because that oily lubri­cant isn’t there to help the joint move. And it’s the com­mon­est form of long-term inflam­ma­to­ry joint con­di­tion in chil­dren and young peo­ple and it’s not the same as rheuma­toid arthri­tis which is a com­mon con­di­tion in adults. Chil­dren present dif­fer­ent­ly. What’s going on with­in their joints and their body is also a dif­fer­ent process and it occurs in about one in 1,000 children.

And there’s dif­fer­ent descrip­tions that we give to JIA. Some chil­dren just have a few [affect­ed] joints. Usu­al­ly, we describe chil­dren with less than four [affect­ed] joints, sort of max­i­mum four joints, as ‘oligoar­tic­u­lar’.

If, with­in the first six months they have four [affect­ed] joints but, after that, they go on to devel­op more, we talk about ‘extend­ed oligo’.

If they’ve got lots of [affect­ed] joints, which often involves the hands as well as some of the oth­er joints, then they’ve got ‘pol­yartic­u­lar’.

For some chil­dren it can be asso­ci­at­ed with oth­er med­ical con­di­tions such as pso­ri­a­sis, and that can either be with­in the child them­selves or, if broth­ers or sis­ters or par­ents have got pso­ri­a­sis and then the child devel­ops arthri­tis, we’d refer to it as psoriatic.

Some chil­dren can be much more unwell. They have tem­per­a­tures, they can have skin rash­es and they might end up in hos­pi­tal with it. And this is known as ‘sys­temic’. Sys­temic as in the whole body is affect­ed, more than just the joints. And then ten­dons join the mus­cles to the bones and, in some chil­dren these, the ten­dons, can be inflamed as well as the joints them­selves and this is known as ‘Enthe­si­tis’ or ‘ERA’.

And I just want­ed you to have a think for a few min­utes about, sort of, how your child or oth­er chil­dren might present, either ini­tial­ly with arthri­tis or, once they’ve got the diag­no­sis, what symp­toms they might have because it’s easy for me to say here they get pain, stiff­ness and swelling in their joints. Most chil­dren don’t have a clue what stiff­ness is. They don’t rock up and say ‘Oh I’ve got stiff joints’. Swelling’s quite sub­tle for par­ents and for us. We often are not sure whether joints are swollen or not, par­tic­u­lar­ly in young children.

One of the things I’ve heard a lot about is chil­dren who used to get out of their bed, prob­a­bly annoy­ing­ly at the week­end, they would jump out of their bed, come through, climb in to mum and dad’s bed and then often they just, they don’t get out of bed. It’s all of sud­den- well not all of a sud­den, but over time they wait in their bed until mum and dad come and get them. Or, if they do get out of bed all of a sud­den, you can hear them. They’re kind of thump­ing through the floor because their joints are not quite as free-flow­ing. Just dai­ly activ­i­ties – they might strug­gle to brush their teeth, they might have [pre­vi­ous­ly] washed their hair inde­pen­dent­ly – now they’re strug­gling to do that.

Lots of chil­dren don’t like get­ting their shoes and socks put on if they’ve got inflam­ma­tion in their feet. For ages they have been absolute­ly fine with it and then, all of a sud­den, they just don’t want to put them on, it’s a bit of a fight to get them out the door and, espe­cial­ly that’s com­mon with chil­dren that are young tod­dlers and it might just be oh are they hav­ing a bit of a tod­dler tantrum sort of thing, but actu­al­ly it’s because it’s sore but they don’t under­stand how to tell you that it’s sore.

It’s often some­thing that peo­ple don’t tend to notice to start with but, once we treat it and they start to get bet­ter, that their whole per­son­al­i­ty changes but it’s so grad­ual that you don’t often notice and it’s only when they get bet­ter that you think ‘Actu­al­ly they’ve come alive again’. They’re much hap­pi­er, they’re much bub­bli­er, much more con­fi­dent again.

Evans:

We heard from Sharon Dou­glas, Chair­per­son and Co-Founder of The Scot­tish Net­work for Arthri­tis and Chil­dren wel­com­ing every­body ear­li­er. So, why is there a need for an organ­i­sa­tion like SNAC?

Dou­glas:

When my daugh­ter was diag­nosed with arthri­tis when she was at the age of two, it felt a very lone­ly time because we didn’t know any­body else who had arthri­tis and I felt that we were the only peo­ple that it had affected.

So, we went on to a par­ents’ event up in Aberdeen that the hos­pi­tal staff had put on for par­ents to find out infor­ma­tion about JIA. So, we had gone up to that and we met lots of like-mind­ed par­ents who also felt quite iso­lat­ed and quite alone. And we chat­ted with the hos­pi­tal staff who were able to sup­port us in set­ting up in this net­work for arthri­tis in children.

So, we, basi­cal­ly, how it start­ed was we got all the fam­i­lies togeth­er, we did an email mail­ing address and then we just asked peo­ple ‘Would the net­work be help­ful and do you think that it would help oth­er par­ents and your chil­dren to realise that they’re not alone?’ And that we could work togeth­er so – and what we did was all done by ask­ing the par­ents what they felt would be helpful.

So, we do events, as you know, and Infor­ma­tion Days, edu­ca­tion is key but real­ly, I think it’s just [impor­tant for] chil­dren and par­ents to meet oth­er fam­i­lies liv­ing with the same condition.

Evans:

What they say is that when a long-term chron­ic con­di­tion enters a fam­i­ly it’s not just the per­son with that con­di­tion who suf­fers and has to adapt to it. The unwant­ed guest has to be dealt with by the whole family.

Dou­glas:

And actu­al­ly, that’s prob­a­bly the key to what SNAC does. In fact, every event that we do, we always have par­ents and sib­lings. We nev­er just keep [restrict­ed to] chil­dren with arthri­tis. Their whole fam­i­ly is involved.

Lau­ra:

We are Lau­ra and Jamie and we’re here with our daugh­ter Sarah who’s eight who has had juve­nile arthri­tis since she was three years old.

She was diag­nosed with the con­di­tion so we’re here to learn more about how to help Sarah, sup­port Sarah in man­ag­ing it. I sup­pose it’s quite an emo­tion­al thing actu­al­ly [to] just real­ly try and be bet­ter informed as par­ents to try and nav­i­gate through this journey.

Jamie:

I think it’s good for her also to see that there is [sic] oth­er chil­dren, you know ‘cause she doesn’t have any oth­er friends or fam­i­ly with this con­di­tion at her age. So, com­ing to a place like this she gets to play and see oth­er chil­dren in real life. She’s not alone, I sup­pose, with the con­di­tion. We were here three years ago but she was only five at the time. So hope­ful­ly now she’s an age to have a bet­ter under­stand­ing as well.

Evans:

When you came here three years ago, how did com­ing here change her and your approach to her illness?

Jamie:

For me it prob­a­bly helped us realise what she’s going through every day ‘cause we almost got into a bit of a habit. She had a week­ly jag and she would get the week­ly jag and go off. I think she’s maybe one of the luck­i­er ones ‘cause we did hear from oth­er chil­dren who had to get jags maybe once a day or had a real­ly tough time with it. Where­as I think it showed us actu­al­ly Sarah was maybe one of the more lucky ones at that time.

Lau­ra:

I think ‘cause she was so small it almost just became part of life. You know when she’s been get­ting injec­tions for so long it just became part of how things were. But com­ing, I think, last time we, we cer­tain­ly learned bet­ter cop­ing mech­a­nisms like around, you know when she’s hav­ing her jag hav­ing, you know, a ted­dy or the envi­ron­ment that she was in and you know the peo­ple that she want­ed in the room – like maybe her broth­er to hold her hand and things like that – so you know it was nice in that way ‘cause you also learn a lot from the oth­er par­ents that are here because you tell each oth­er sto­ries about what your life’s like and you learn oth­er ways to deal with situations.

I actu­al­ly think that’s prob­a­bly been one of the best things is chat­ting to oth­er par­ents. Though the pre­sen­ta­tions are all won­der­ful as well, you know they’re so infor­ma­tive, but you just learn so much from oth­er par­ents that can empathise with exact­ly what you’re going through.

Evans:

How did you know when the con­di­tion start­ed? When Sarah was three – how did you know that some­thing was going on?

Lau­ra:

Oh, it took a long time to get a diag­no­sis. She had pain in her ankle. It was swollen, it was red, it was hot.

Jamie:

Some­times we would go to the GP ‘cause she’d com­plain of sore ankle but when she was in the doctor’s surgery they’d be, you know, twist­ing her ankle around, mov­ing and it wasn’t sore so it wasn’t maybe flar­ing up so they would send us away and we weren’t real­ly sure ‘cause we knew she wasn’t mak­ing it up as such but it was very strange how one day she was in agony, you know she was scream­ing in pain, but the next there was noth­ing at all. No pain so that it did take a wee while – a good kind of cou­ple of months before we got to the bot­tom of that initially.

Lau­ra:

At one point we went to A&E because it was so bad the GP couldn’t do any­thing apart from say give her Parac­eta­mol, give her Ibupro­fen. They didn’t know what was going on. We went to A&E, they scanned it, they said there’s noth­ing mechan­i­cal­ly wrong with her ankle so this jour­ney start­ed and, like I say, it took a few months. But she was get­ting to the point where she was lying in bed and the weight of the duvet on her ankle was mak­ing her cry ‘cause it was so painful and it was just get­ting worse and worse. She couldn’t run at nurs­ery, she had to sit with a chair out in the play­ground. We had to car­ry her lots of places or use a pram as it got worse. And then final­ly we got a diag­no­sis which was very emo­tion­al. We did not see it com­ing at all. Yeah…

Jamie:

Well for a three-year-old to be diag­nosed I sup­pose with arthri­tis – it’s not some­thing we would ever have real­ly expect­ed. I sup­pose it opened up a bit of a new world.

Evans:

Was there any relief to get a diagnosis?

Lau­ra:

There real­ly was because to get that ‘OK, we know what it is’ — although it was quite dev­as­tat­ing it was a good thing in that we knew…

Jamie:

It meant you could then move on and look at the treat­ment options.

Vanes­sa:

[Address­ing the audience]

Hi, is it ok if I just start? I’m con­scious that I don’t want to keep you guys too long ‘cause it’s gonna be nice and sun­ny hope­ful­ly outside.

So, I’m Vanes­sa. I’m a Rheuma­tol­ogy Nurse in Edin­burgh and I’m just going to speak to you a wee bit about med­ica­tions. Why use med­ica­tion? What med­ica­tions do we like to use for JIA and how are med­ica­tions given?

So those are real­ly the big ques­tions and what are the side effects of those treatments?

So cur­rent­ly there are no cures for JIA but what we want to do is con­trol the dis­ease and we want less inflam­ma­tion obvi­ous­ly and less joint dam­age so those are our rea­sons for mov­ing on to giv­ing treat­ment. It’s not ‘cause we’re mean and we want to make our chil­dren suf­fer with injec­tions and infu­sions and things. It real­ly isn’t. We’re def­i­nite­ly not about that.

So, we are look­ing real­ly for a bet­ter out­come for child and patient. So, we have hap­py chil­dren, that [are]able to get about and do the things that chil­dren should be doing. So, you can be hap­py as well ‘cause when your kids are in pain you’re not hap­py and basi­cal­ly so they can do the things that kids are meant to do, includ­ing school.

So, we also want to think about their long-term out­look. You know if you ignore the fact that they’ve got arthri­tis and you let joints get dam­aged the future is not par­tic­u­lar­ly great. We can replace joints but only to a lim­it­ed degree and they only last for a few years.

So why do we use med­ica­tions? To get you well in the first place. To keep you well. And then we have a plan for their ongo­ing in the future when med­ica­tions work. If there’s prob­lems, what do we do next?

If you were on the wait­ing list to be seen to come in and have your first appoint­ment and some­body phones up and they say my GP’s referred me, my child is real­ly in pain. Some of the things that we would say to you on the phone would be ‘Are they asth­mat­ic? No? Can they then take some ibupro­fen – that might tide you till we get you seen, because we would wait six weeks usu­al­ly till a patient is seen for the first time and then when they are seen that very day if there were a lit­tle bit of swelling, not a huge amount, we might say we’ll move on to a non-steroidal anti-inflam­ma­to­ry and, that pic­ture that Julie had up ear­li­er in the pre­sen­ta­tion had a child with real­ly quite swollen knees, and, if that was the case, we would say look we need to set­tle that down quick­ly, we’re going to use some steroids and you would get those steroids either as a tablet or as an IV infu­sion, put in a can­nu­la. Or we might do it as a joint injection.

Joint injec­tions are great because you can put a small amount of tar­get­ed steroid exact­ly where you want it into the joints that are affect­ed. They’re usu­al­ly pret­ty fast in work­ing. Most patients will get results with­in a day or two, at least with­in a cou­ple of weeks if it’s going to work.

And now, for most of our patients, if they’re not too small, we can get away with doing it under some gas and air – some gig­gly gas some Entonox so we can do it quite nice­ly while they’re awake with­out need­ing to have a gen­er­al anaesthetic.

Our next line of treat­ment after that is usu­al­ly, if we don’t think a joint injec­tion on its own or a short course of steroids is going to set­tle things down, then we would usu­al­ly move to what we call DMARDS which are ‘dis­ease mod­i­fy­ing anti-rheumat­ic drugs’ and the one that prob­a­bly every­body in the room has heard of is Methotrex­ate, would that be fair to say? Yeah [laughs] that tends to be our first line treat­ment and that comes in either a tablet, a liq­uid or as an injec­tion which we can now use in like an auto-inject pen which is so much better.

Then our next line, mov­ing up in the treat­ment, we would be com­ing on to bio­log­ics, so that’s a par­tic­u­lar med­ica­tion that is tar­get­ed towards chang­ing or switch­ing off a part of the immune sys­tem so help­ing to con­trol that over­ac­tive inflammation.

Evans:

[Back­ground noise of chil­dren playing]

I just have to explain what’s going on here. Two girls are dressed in these enor­mous bub­ble-like sumo wrestler suits and they’re charg­ing at each oth­er try­ing to push each oth­er over. And the win­ner is the one who can push the oth­er one out of the ring just like prop­er sumo wrestling.

Kay Sin­clair:

My name’s Kay Sinclair.

David Sin­clair:

And David Sinclair.

Kay:

And our daugh­ter is Eve.

Evans:

Eve – Did you win?

Eve Sin­clair:

Oh no, it’s 2:1 – well 3:1.

Evans:

Yeah, but you’ve got your own back because you pulled him down from behind after the game finished.

[Laugh­ter]

David:

Games­man­ship!

Evans:

Are you enjoy­ing yourself?

Eve:

Yeah, it’s fun.

David:

And you’ve made friends?

Eve:

Yeah.

Evans:

So how does a week­end like this – meet­ing the doc­tors and the oth­er par­ents? What’s it mean?

David:

It’s a lot more relaxed than meet­ing the doc­tors like in a hos­pi­tal envi­ron­ment. It’s a lot more relaxed so you can ask any ques­tions that you maybe wouldn’t think of when you’re at the hos­pi­tal. And it’s obvi­ous­ly quite fun get­ting to play the games and see the kids kin­da meet oth­er kids that have the same con­di­tion as them.

Kay:

It’s nice hear­ing oth­er par­ents’ ques­tion as well some things ‘cause, like you say, it’s quite hard to remem­ber every­thing that you want to ask at the same time.And then some­one might bounce in and say some­thing that you were think­ing. So yeah, it’s quite good being in the relaxed envi­ron­ment. I like it bet­ter than being in a hos­pi­tal or a clinic.

Evans:

And I guess you have ques­tions for oth­er par­ents and oth­er par­ents have ques­tions for you.

Kay:

Yeah, absolute­ly yeah. Uh huh, ‘cause one of the mums I was speak­ing to there was say­ing that she’s going through the process of chang­ing med­ica­tion and then I obvi­ous­ly was say­ing that we’re in the process of Eve stop­ping med­ica­tion so that was quite uplift­ing to hear I think from our side to them as well. So, there is hope­ful­ly, fin­gers crossed, some of the chil­dren will grow out of it.

Shardie Suther­land:

I’m Shardie Sunderland.

Robert Nightin­gale:

I’m Robert Nightingale.

Hay­ley Sutherland:

Hay­ley Sutherland.

Evans:

Hay­ley, you’ve just been sumo wrestling with Eve. How’d it go?

Hay­ley:

[Laugh­ter]

It was funny.

Shardie:

It’s impor­tant for the chil­dren to be able to meet and see that there’s more peo­ple like them ‘cause it is so, you don’t know any­body with it. I mean, I did think that chil­dren nev­er got it, it was just old­er peo­ple you know, that was my opin­ion. So, I was so shocked when they diag­nosed Hay­ley with arthritis.

Evans:

How old was Hay­ley when she was diagnosed?

Shardie:

She had just turned six. She was just six. And now she’s ten. It’s got­ten a lot worse since she got it. It was just her knees – now like we’re wait­ing. She might be get­ting joint injec­tions in her jaw, her shoul­ders, her wrists, her hips, her knees, her ankles we’re told.

Evans:

How do your friends feel about you hav­ing arthri­tis, Hayley?

Shardie:

[Address­ing Hayley]

What – do they make sure you’re OK? [Hay­ley agrees] They wor­ry about you.

But I don’t think the chil­dren under­stand how hard it is. I think that is the prob­lem is that…

Hay­ley:

I think they think I’m a like they think I’m very dif­fer­ent to others.

Shardie:

Dif­fer­ent? No, I think, I just don’t think that they under­stand how hard it is ‘cause like a lot of things she’ll have to sit out from doing some­times ‘cos she’s real­ly sore. A lot of your clos­er friends under­stand but I don’t think they just under­stand fully.

Vanes­sa:

[Address­ing the conference]

One of the big prob­lems when we talk about med­i­cines is the poten­tial of side effects. So, just to sim­pli­fy this, when we’re talk­ing about side effects it’s the unwant­ed effects so in non-steroidals that might be some­thing like a poten­tial for a stom­ach upset which we can coun­ter­act by using oth­er med­i­cines, but, then that’s anoth­er one for your child to take, and there is no such thing as a med­ica­tion that doesn’t have the poten­tial for side effects.

So, we try to get away with as lit­tle as we can. I think steroids are the med­ica­tions that we now con­sid­er the most tox­ic that we use and we try and use them spar­ing­ly because they’re great at switch­ing off inflam­ma­tion but, long-term, to keep using high dos­es of them can cause all sorts of prob­lems so the things that teenagers, for instance, don’t like is the weight gain, the moods, the acne, that kind of slight­ly round­ed face. Those would be short-term, gen­er­al­ly, side effects. But, if you con­tin­ued to use steroids and you get weight gain, you also can have that increased chance of devel­op­ing dia­betes, you can have risks to your blood pres­sure going up, bone den­si­ty can be a prob­lem if we’ve used a lot of steroids so that’s not great for long-term use. Fan­tas­tic for short-term so we often get kids they go ‘I just want to have more of those joint injec­tions please, because they work’ [laugh­ter] ‘just get that over and done with and then we can move on’. But long-term we can’t keep doing that. So, we couldn’t keep treat­ing a knee with arthri­tis every two months with anoth­er joint injec­tion for instance. If it kept com­ing back, we have to move on to oth­er treat­ments because we can’t stick at steroids.

For bio­log­ics each one has a slight­ly dif­fer­ent func­tion and each one works in a slight­ly dif­fer­ent way so some of them will switch off cer­tain parts of your immune sys­tem. The anti TNF’s we’re aware that chil­dren shouldn’t have things like pierc­ings while they’re on them because they might not heal up so quick­ly. So, whilst you wouldn’t think of that as a tra­di­tion­al side effect, you know, you’re talk­ing to teenagers that want to go and get their nose pierced or want to do things and you’re like ‘Oh, here’s anoth­er draw­back for hav­ing this chron­ic con­di­tion, I can’t go and do what I want to do’. For most of them they laugh and say that it’s not a prob­lem but we’d ask them not to drink non-pas­teurised milk or eat smelly cheeses and things and you’re like yeah that’s not an issue for most of us [laugh­ter] but I always remem­ber one boy who was, I think, twelve and I asked him what his favourite food was and it was lob­ster. So, I was like ‘OK’ [laughs] you have more expen­sive taste than me! In a dif­fer­ent league slightly!

[Audi­ence Applause]

Ali­son Ross:

Hel­lo every­one. My name is Ali­son Ross and I’m a nurse that works in Aberdeen with chil­dren with arthri­tis and, this after­noon, we are going to look at cop­ing mech­a­nisms with Juve­nile Idio­path­ic Arthritis.

But I know not every­body here has arthri­tis. You either have a broth­er or a sis­ter that has that, is that right? Yeah? OK so we’ll talk a bit about that as well.

So, how does arthri­tis affect a young person?

So, it’s your own immune sys­tem attack­ing your joints and we don’t know why it does some­thing strange like that and the symp­toms are you’re stiff, espe­cial­ly in the morn­ings. It’s real­ly hard to get going and it’s real­ly you at your most sore. We know there’s swelling and ten­der­ness at the joints, some peo­ple have a rash depend­ing on what type of arthri­tis you have. Most peo­ple have some type of pain and some peo­ple have restric­tion in their move­ments. Maybe they’ve got a stiff arm or a stiff elbow, stiff ankle with that. Some­times some peo­ple feel a bit irri­ta­ble and angry and feel­ing a bit sad and ‘Why me’ but most of us feel like that, that’s not unique to chil­dren with arthritis.

So why do we both­er treat­ing arthri­tis. Well, we want every­one to have healthy joints. The idea is, if you’re affect­ed by arthri­tis when you are lit­tle, when you grow up you can do every­thing that you want to do, you’re pain free, you’re com­fort­able, you’re grow­ing because we want – we see some chil­dren who are real­ly small with arthri­tis. And as they get old­er, I’ve been in the job twelve years, I’ve seen two-year-olds that are now four­teen so we see them right through their whole grow­ing spells. We want that to do well.

So, we all know that our broth­ers and sis­ters, or you your­selves, take med­i­cine so the med­i­cines can some­times be tablets. The med­i­cines can some­times be an infu­sion in a vein. And a lot of peo­ple take injec­tions, alright, and we know that a lot of the drugs have side effects, so you maybe feel a bit sick, you feel a bit grumpy with it, you can have increased infec­tions. Coughs and colds with it – come around a bit more fre­quent­ly and we do this fun­ny thing – we do these blood tests quite a lot. I’m sure that peo­ple who have got arthri­tis are sick of hav­ing blood tests but it’s real­ly impor­tant that we do that because we need to know that inside every­thing is work­ing ok.

So, what do we mean by inside?

So, we’re talk­ing about your liv­er and your kid­neys are all work­ing prop­er­ly so we can do that by look­ing at what blood says. Some­times the treat­ments can lead to lots of anx­i­ety because we do a lot of nee­dles in rheuma­tol­ogy, don’t we? We do do a lot of nee­dles. I wish we didn’t.

What helps with cop­ing with tak­ing medications?

Be open and hon­est with the doc­tors and nurs­es that are look­ing after you. And we’ve looked after lots of boys and girls over the years and we’ve heard lots of sto­ries of peo­ple doing dif­fer­ent things. We’ve had peo­ple say­ing I take my meds but actu­al­ly don’t. I actu­al­ly spit it out or I say I take it and then I hide it in the cup­board, in the bed­room. We’ve had a few peo­ple have had a stash of med­i­cines in their bed­room. Or peo­ple say, well we just pre­tend that we take it and we don’t let on to anyone.

So yeah. Everybody’s dif­fer­ent and they are hard med­i­cines to take. And it’s always good to go back to the doc­tors and nurs­es look­ing after you and say ‘This is real­ly hard for me to take this’, and give a rea­son why and we’ll try our best to help you.

All of the doc­tors will give you some sort of choice in your med­ica­tion as to how it’s tak­en so it might well be that what works well for you is an infu­sion but you can have a choice – you can have it in a drip or you can have it as an injection.

Not many of them come as a tablet but there is some choice with it – also how fre­quent­ly you can have it. So, you can talk about what works for you. Some peo­ple say ‘I can’t stand nee­dles, but I can take the actu­al drip going in, I don’t find that sore’ and some peo­ple are like ‘Oh no, I don’t want to spend all that time in hos­pi­tal – half a day hav­ing an infu­sion or two hours of my life, I don’t want to do that no’ so we’ve got lots of wee tricks that we use. I don’t know if any of you have used numb­ing creams and you can get anti-sick­ness med­i­cine against Methotrex­ate and we use Buzzy, a lit­tle device that can help with injec­tions to stop it being so sore, and there’s some­thing, this fun­ny thing, called med­i­ta­tion tech­niques. And some peo­ple that take some med­i­cines they look a lit­tle bit dif­fer­ent for that time in their treat­ment – maybe a year or two years. And the ones that do that tend to be the steroids and the way that you look dif­fer­ent when you take the steroids doesn’t last once you stop tak­ing it, it fades away – all the symp­toms. Some­times some peo­ple, have a slight­ly chub­bier face, they can feel more grumpy with it, they put on a bit of weight, but that comes off again and peo­ple look different.

So, what helps?

We’re always on about being active and that’s what’s great about this week­end, isn’t it? Every­one here is real­ly, real­ly active. You’ve all been out doing Laser Quest? Yup, before lunch? Fab­u­lous, good. And you need to take time to learn what works for you because I’m not sure that every­one was able to do Laser Quest today. Am I right in say­ing that? Maybe some­body went off to do some dif­fer­ent things, yeah? And stay­ing active might be low impact exer­cis­es, so it might be some­thing like swim­ming. I don’t know if some of you like to swim? It’s real­ly impor­tant for your arthri­tis. Maybe you do yoga? Or med­i­tate with it. Has any­body here, pop up your hands, do you use any Apps on your phone that help with keep­ing fit?

Have you heard of The FitOn App? It’s a free App. You might want to have a look after this ses­sion that helps you do exer­cise at the lev­el that your fit­ness is at. It’s not designed for an ath­lete that is run­ning lots and lots and lots of miles, or doing ath­let­ic things. It might be some­thing you want to do and some­thing all our phys­ios say as well is we don’t want you doing boom/bust exer­cis­es so things like ‘Great, I’m going to go out today and I’m going to cycle my bike for four miles and then I’m going to run in with the dog and do this’ and then, for the next two weeks, you’re not able to do any­thing. That’s not helpful.

We’ve to remem­ber the physio ther­a­py is a treat­ment in arthri­tis but it tar­gets spe­cif­ic joints so we don’t send every­one away to do phys­io­ther­a­py. It might well be you’ve got a bad knee and maybe the mus­cles here are a bit not – as pro­nounced as they would be – and match­ing [with] the oth­er side. So, the physio does spe­cif­ic exer­cis­es for that.

So, cop­ing with emo­tions. Keep the lines of com­mu­ni­ca­tion going. I know you’re all look­ing at me think­ing when is she going to end and it will be soon. So, it’s good to talk to your friends and fam­i­ly and meet all these peo­ple here today.

Take time to relax. Take breaks from the screen and lots of peo­ple spend a long time on their phones or their iPads. Remem­ber every­one is dif­fer­ent. None of us here today, with the excep­tion of two young ladies who look alike, I’ve noticed every­body looks dif­fer­ent. Every­one has good and bad days. And be kind to yourselves.

Kirsten:

My name is Kirsten and my daugh­ter, Rosan­na, who’s eleven, had JIA diag­nosed at fif­teen months. Had steroid injec­tions, start­ed on Methotrex­ate and it all went fair­ly well and then at four years old she was then diag­nosed with Uveitis. So that was then changes of med­ica­tion and in gen­er­al she’s real­ly, real­ly well. Just some ups, some downs and when it’s the ups you’ve just got to go with the ups. She just copes so well.

Evans:

How old is she now?

Kirsten:

Eleven. She just gets on with it and she hides the pain a lot. She knows her­self, if she’s in pain, she’ll take med­ica­tion or just slow down with what she’s doing. And she knows if she over­does it the day before, the next day she just needs to rest.

Evans:

It’s often in these occa­sions where you con­cen­trate on the kids. But what about the parents?

Kirsten:

Yeah. It nev­er stops, nev­er stops and hos­pi­tal appoint­ments – just you nev­er get a break and some­times you just want a cou­ple of months off, espe­cial­ly with injec­tions when you have to do injec­tions every week – if they get upset. Some­times the child is OK and they’ll go through a phase of being OK with their injec­tions and then they’ll start to get – they hate them again and they’ll get sick and then that’s when you just want time out and just take time for your­self. But you’ve got to just keep going for the child.

Ross:

[Address­ing the conference]

So, we’re going to look at cop­ing with JIA as a fam­i­ly. What makes it better.

So, on your tables today I have put out ‘What is a Good Day?’ and what I’d like you to do is, I did this yes­ter­day in my office before I came here, is I’d like you to draw around your hand. And you’ve got the five fin­gers and I want you to tell me five things that make it a good day.

So, yes­ter­day I did mine in my office and I wrote that I’d slept well. So that’s a good day for me. It was sun­ny weath­er, even bet­ter day for me. I had exer­cise out­doors, we had our favourite meal for tea and I felt hap­py with life. So that was five things. So, see if you can do that. There’s no rush and we’ll go around and have a chat about that.

Hmm but then my life is not per­fect. I have bad days. Look at my bad days. So, I thought about what was a bad day, which wasn’t that far away – I think it was the Tues­day of this week – so I slept bad­ly, I’d sore feet because I’d done a lot of walk­ing with my dog ‑feel­ing a bit grumpy because I was a bit tired. There was no milk in the fridge when I got up in the morn­ing – made me very upset – and we had a fall out over it as well.

So, my life is not per­fect. So, we’re just look­ing to see what would be a bad day for you and when we look at what every­body does, we can come togeth­er as to how we think we can make things better.

So, on your oth­er page, we have ‘Things to Make It Bet­ter’. I didn’t write the title on it because you might want to write a dif­fer­ent title on it.

So, I thought about my bad day and I thought what actu­al­ly made me bet­ter. So, there’s no rights and wrongs with this. There’s no marks for spelling or any­thing else that’s there. We want to know what you think.

So, I put down. Hug a fam­i­ly mem­ber or pet. I’m very par­tial to a col­lie dog and I love her dear­ly so I gave her a wee hug. What’s your favourite film? I’ve got quite a few that I par­tic­u­lar­ly like to see. Take a break from the screens because I’ve done a lot of IT work this week and exer­cise out­doors and read a book. So, step­ping down and chill­ing out. So, if we all write down this and then we can come togeth­er and have an idea and see if we can iden­ti­fy things, that actu­al­ly make things bet­ter for all of us not just ‘Oh it’s alright for you, you’ve got a dog so it makes you hap­py’ or do what­ev­er – what works for you.

So, a bad day might be, well, you know ‘It’s a Tues­day, get an injec­tion and have a trip to the hos­pi­tal, have to have a blood test, fell out with my sis­ter, didn’t get my favourite tea’ – so what­ev­er you think. There’s no rights and wrongs. Just write them down and we’ll have a look and see if we can come to some conclusions.

Karen Bar­rie:

I’m Karen Barrie.

Gor­don Barrie:

Gor­don Barrie.

Evans:

So, you have a child here?

Karen:

Yes, Kath­leen who’s ten. She was diag­nosed when she was six­teen months old.

Gor­don:

She’d only just start­ed walk­ing and then…

Karen:

Yeah, yeah or she got it six­teen months and then got we, we got, got a full diag­no­sis at eigh­teen months. Yeah, so it was over those two months to get her diag­no­sis. What was wrong so yeah, she was tiny.

Evans:

Well, I’m just think­ing of my own grand­chil­dren and my own kids. How on earth would you diag­nose an arthrit­ic con­di­tion in a six­teen-month-old child?

Karen:

So, she start­ed walk­ing at four­teen months. She was a wee bit lat­er in walk­ing and then just one day she came home and she’d had a fall at nurs­ery and she devel­oped a limp and it just didn’t get bet­ter. So, it was her doc­tor that thought maybe she had a tod­dler frac­ture so we took her up to the A&E hos­pi­tal. She got X‑Rays and there was, there was noth­ing, so we had a cou­ple of months of keep­ing going back with this con­stant limp that wouldn’t get bet­ter. Even­tu­al­ly it was the orthopaedic doc­tor took her in for an MRI because she wasn’t right at all. She was grumpy. She was real­ly not her­self at all and then had this limp and even­tu­al­ly with the MRI they realised it was arthri­tis in her knees.

So, it was actu­al­ly in both knees. Although she was just limp­ing with one. If she didn’t have the limp, we wouldn’t have known what was wrong. So, she then had her steroid injec­tions in her knees but it then spread so she had the extend­ed Oli­go. So, it then moved around until they got it under con­trol and every now and again it will flare up into dif­fer­ent joints. Usu­al­ly when they take her off her med­i­cine and then she kind of flares back up again. But we’ve had a cou­ple of years, fin­gers crossed, that’s it’s kind of been OK, but she’s also got Uveitis. So, it also appeared in her eyes a few years ago. So yes, she had to then switch med­i­cine and things so. But, at the moment she’s, yeah, you wouldn’t know she had it. Which is good.

Gor­don:

And she does loads of sports and bal­let and gymnastics.

Karen:

Oh yeah, she does loads of dancing.

Gor­don:

So, it’s not held her back at all.

Karen:

No, which is great.

Evans:

What sur­prised me most about being here this morn­ing is that, I mean, I’ve just been watch­ing sumo wrestling, they’re all shoot­ing each oth­er with laser guns at the moment [laugh­ter], good­ness knows what they can do to each oth­er next. You would not think that these chil­dren have life chang­ing pain conditions.

Karen:

I know.

Gor­don:

They just get on with it. As kids do…

Karen:

That is the good thing about them. She’s always just kind of got on with it apart from, obvi­ous­ly, when she couldn’t com­mu­ni­cate with us. Oth­er than that, she has just got on with it. It’s a bit of a bat­tle with the med­ica­tion now and again, although it seems to be a bit set­tled now she’s a wee bit old­er, but we did have a phase where she didn’t want the injec­tions and she’d for­got­ten why she was tak­ing them because she hadn’t had a limp or any­thing for a wee while and she’d been on it a few years, so she’d for­got­ten why she was tak­ing it. And you know it was ‘Why do I have to take it, like I don’t know why, and why is it only me?’.

That’s why this is great because she is meet­ing oth­er kids that have the same thing ‘cause she’s not real­ly met any­body that has the same con­di­tion as her before. So, this is great for her. Yeah, It’s the con­stant med­ica­tion that’s the main thing for them I think but that makes them able to do this.

Gor­don:

Yeah. I think they get to a cer­tain age, it was at six or sev­en, where they start to realise their friends aren’t in the same posi­tion. You know, they’re not get­ting fort­night­ly injec­tions, or they’re not hav­ing to take a tablet every morn­ing. It’s only once they get to that age that they kind of realise that’s not the norm because every kid thinks their norm is the norm until they dis­cov­er oth­er­wise, and it’s usu­al­ly that six or sev­en mark and they realise.

Evans:

Do her cir­cle of friends, school friends, realise that some­thing is up and treat her differently?

Karen:

I don’t think so. I think they for­get that she’s got arthri­tis. They do know but, because she’s been so good recent­ly, they don’t remem­ber that she’s got it, I don’t think, half the time, and she does quite a lot of danc­ing. And she does bal­let and goes to the Roy­al Con­ser­va­toire for bal­let and stuff and I don’t think they realise she’s got it at all.

Gor­don:

No, it’s not changed any­thing. Not made any allowances for it but they’ve not need­ed to so…

Karen:

I think it was a bit dif­fer­ent when she start­ed school, when she’d had a break off her med­ica­tion and her arthri­tis flared up again and she couldn’t get in quick enough to get joint injec­tions. So, she start­ed school with a limp and I think peo­ple did treat her a lit­tle bit dif­fer­ent­ly then. So, I think, when it’s vis­i­ble, if you’re flar­ing and you’re not mov­ing quite so well, then they would start maybe to treat her dif­fer­ent – ‘Why are you doing that?’ or ‘Why can’t you keep up’ or, you know, she had a wee bit where she couldn’t keep up with her friends so she would get a wee bit lost. You know a big play­ground and her friends would run off and she couldn’t. But, oth­er than that, when it’s under con­trol, no it’s fine.

Ross:

[Address­ing the conference]

So, how many peo­ple on a bad day said that they were sore? Five, that’s quite a com­mon thing, isn’t it? About hav­ing a bad day? How many peo­ple are in a bad mood on a bad day? Oh Wow.

So, it’s quite com­mon these themes, isn’t it? Wow o can’t do the things you want to do, or tasks that you want to do. Ten, yeah, right hands up, who feels tired? Will we just say every­one on a bad day [laughs].

Do you know what? You’re not going to believe this you’ve near­ly all writ­ten the same things. We’re all kind of sim­i­lar, aren’t we? So, friends not avail­able most­ly – so on a bad day I’ve got here – no moti­va­tion. How many peo­ple on a bad day just can’t be bothered?

The back table want to tell me what you wrote on your good day? What, what’s good for you on the back table?

Child 2:

[Shouts out]

Nice and sunny.

Ross:

OK, so good weather.

Child 3:

[Shouts out]

Going out with my friends.

Ross:

OK so going out with our friends, yeah, absolutely.

Any ideas on the back table?

Child 4:

[Shouts out]

Foot­ball.

Ross:

Foot­ball, yeah, yeah, we’ve got sport here. So, we’ve got favourite food, we’ve got Pop Tarts for break­fast, bet­ter than my milk that wasn’t in the house, isn’t it? Yeah, def­i­nite­ly Pop Tarts for breakfast.

Play­ing with friends.

A warm day.

Lis­ten­ing to music.

Favourite din­ner, sun­ny days, play­ing with friends, spend­ing time with my dog, favourite films, slept well…

So, look­ing through all the com­ments about what can make it bet­ter, there’s def­i­nite­ly – I can’t pick out from any of these who has arthri­tis and who doesn’t. We all think and feel the same whether we do have some­thing wrong or not. So, if we look at things – we all like to sleep well, we all like nice weath­er, we all like friends and to be pop­u­lar, and to be liked and to be with peo­ple. And we also like our space as well. Because peo­ple have writ­ten ‘Time to say “I want to be on my own”’.

Peo­ple like music. There wouldn’t be a music indus­try if we didn’t would there? So obvi­ous­ly peo­ple like that as well.

So, we can con­clude that we’re actu­al­ly not that different.

Tam­my Fraser:

I’m Tam­my Fras­er and this is Tim Fras­er. Our son, Sam, has JIA. We’re from the Shet­land Islands – as far north as you can pos­si­bly go in Scot­land – we’re the sec­ond most norther­ly island in Britain. An Island called Yell. Sam didn’t real­ly know any­body his own age with arthri­tis so it was, yeah, a way for him to kind of see that he’s not alone. It’s not just him, there is [sic] oth­er kids his own age that suf­fer with the same thing.

As par­ents it gives us a chance to speak to oth­er par­ents and, you know, find out their expe­ri­ences of just hav­ing a kid with JIA, but whether it be med­ica­tion or just day-to-day liv­ing, our unique­ness or how we’re able to get treat­ment for Sam because of where we live, it’s a bit dif­fer­ent and it just that gives anoth­er per­spec­tive I suppose.

We’re part of the SNAC fam­i­ly group on Face­book which has been real­ly help­ful. And if we’ve ever had any ques­tions, we can put it on there and par­ents are real­ly good at respond­ing. And our local health cen­tre, our local prac­tice nurse, has been excel­lent because she’s done extra train­ing with the nurs­es in Aberdeen so that we can get infor­ma­tion from her rather than hav­ing to go to Ler­wick or go to Aberdeen. She’s been bril­liant because, with­out her learn­ing how to work the injec­tions and things that we give Sam, we would have had to go to main­land Shet­land to get train­ing at the hos­pi­tal and would have had to go three/four times for them to see us giv­ing Sam injec­tions to make sure we were doing it cor­rect­ly where­as with Rose­mary, learn­ing how to do it and how to show us we can just lit­er­al­ly nip across the road to our local Health Cen­tre and it’s tak­en five min­utes, where­as if we’d had to go to Ler­wick it would’ve tak­en the most of the day. She’s been brilliant.

Jo Walsh:

[Talk­ing to attendees]

In you come, if you want to put any­thing, just put it on a chair or table. Hand gel any­one? Hi, hi every­one, hi.

Right, where’s your badge? Oh, you got it already. Can I do, do you want me to help you put it on? Yes? What’s your name again? Rebec­ca, that’s right…

Walsh:

I’m Jo Walsh. I’m one of the pae­di­atric rheuma­tol­o­gists based in Glas­gow, but work­ing as part of the SPARN network.

Evans:

What is SPARN?

Walsh:

So SPARN is ‘The Scot­tish Pae­di­atric and Ado­les­cent Rheuma­tol­ogy Net­work’. It’s a man­aged clin­i­cal net­work that was start­ed at the same time as SNAC, actu­al­ly in 2009, and it’s how we man­age to look after young peo­ple across Scot­land with arthri­tis and oth­er rheumat­ic conditions.

Whether you live in Shet­land or deep­est Stran­raer or in the cen­tral belt you will have the same access to care and spe­cial­ist treat­ment wher­ev­er you live in Scot­land. And that’s one of our major clin­i­cal goals for SPARN.

Evans:

Now, on this week­end I’ve talked to peo­ple from all over Scot­land. I talked to a cou­ple and their chil­dren from Shet­land yes­ter­day who were the only peo­ple on the Island who have JIA. How do you, in SPARN, sort of give them any core treatment?

Walsh:

There’s many ways that SPARN can help there. So, they have access to the team in Grampian so they have clin­i­cal staff, a nurse, doc­tor, physio and OT access there. But I guess if you do live on Yell, which is as far North prac­ti­cal­ly as you can get, you have to accept you have to trav­el there. But we use video as well to keep in touch with patients. Our nurs­es are open to emails and phone calls so they are get­ting good access to care albeit they have a dis­tance to trav­el for what­ev­er they do in life and we have the same approach for oth­er young patients using the net­work cen­tres of which there are four­teen in Scot­land, each hav­ing a pae­di­a­tri­cian with an inter­est with spe­cial­ist con­tacts with the rheumatologist.

Evans:

Now anoth­er thing about this week­end is par­ents are meet­ing their prac­ti­tion­ers in a social con­text and I guess it makes a huge difference.

Walsh:

Yeah, I mean Scot­land is a small coun­try when it comes to net­works and the whole SPARN net­work knows each oth­er and, with that, we bring a cer­tain per­son­alised med­i­cine for our young patients and their fam­i­lies. And I think that is a love­ly rela­tion­ship to have. SNAC helps us with that and our close col­lab­o­ra­tion with SNAC is para­mount to the work we do.

Evans:

Anoth­er thing I notice is that their pain is invis­i­ble. These kids don’t look ill.

Walsh:

So Paul, you’re quite right in your obser­va­tion. Our aims of treat­ment for these young peo­ple is to ensure that they’re able to do the same as oth­er chil­dren and young peo­ple with­out arthri­tis and, as we saw when we’re see­ing our patients in groups, it’s dif­fi­cult to know who’s got arthri­tis and who hasn’t. Which means our treat­ments are work­ing, whether it be med­i­cines, psy­cho­log­i­cal sup­port, phys­io­ther­a­py, occu­pa­tion­al ther­a­py and all the modal­i­ties that we use. So our aim is to have young peo­ple, albeit on treat­ment, but in remis­sion of their con­di­tion so they’re not expe­ri­enc­ing the pain, swelling and stiff­ness seen in active joints.

Evans:

Some of the par­ents talk about their chil­dren devel­op­ing JIA at fif­teen months. How do you spot that?

Walsh:

You’re quite right. Young peo­ple do get arthri­tis even from the age of less than one year.

In some ways it’s easy to spot because the child may not want to pick some­thing up that they were pre­vi­ous­ly pick­ing up or stopped walk­ing or walk with a limp so it’s quite easy in the young ones to pick it up and I think edu­cat­ing medics, orthopaedic peo­ple about per­sis­tent swelling being a sign of young people’s arthri­tis, get­ting that mes­sage out there, is one of SPARN’s goals. You know we edu­cate peo­ple to recog­nise arthri­tis ear­ly because that makes a big dif­fer­ence to treatment.

Evans:

Now, at the oth­er end of the scale, these kids go from being chil­dren, young adults to adults – where they’re lost from your ser­vice I presume?

Walsh:

Well, I wouldn’t say they were lost from our ser­vice. What we do is we have a real­ly effec­tive pro­gramme of tran­si­tion to young adult care and we have good links with our adult col­leagues in all the net­work cen­tres and tran­si­tion for young peo­ple starts at, you know, eleven or twelve. We go through a stan­dard process using a pro­gram called ‘Ready Steady Go’ to pre­pare the child, young per­son and their par­ents for mov­ing on up to adult, so I see it as a tran­si­tion and not get­ting ‘lost’ to an adult service.

Evans:

And do the adult ser­vices work well with you?

Walsh:

Col­leagues in each of the net­work cen­tres, who are inter­est­ed, will take on the young peo­ple with JIA because it’s a dif­fer­ent type of arthri­tis to adult arthri­tis and they will always have JIA through­out their life. But that pro­gramme of ‘Ready Steady Go’ is fol­lowed by ‘Hel­lo, Wel­come to Adult Ser­vices’ and so that works real­ly well.

Walsh:

[Address­es the attendees]

Today we’re going to be think­ing about how we treat JIA and make it bet­ter, alright.

Who takes any med­i­cine for JIA? Whoa – so med­i­cines are one thing but there’s more than med­i­cines that help JIA get bet­ter. One of the oth­er real­ly impor­tant things for JIA is keep­ing mov­ing. In the morn­ing some­times we feel a bit stiff with JIA. And we had our ban­dages on yes­ter­day didn’t we – for those that don’t have JIA to make them see how it felt and what it felt like didn’t we? Rebec­ca it was a bit tight round the knee, wasn’t it? Got a bit sore after a while.

So, to get mov­ing, par­tic­u­lar­ly in the morn­ings, it’s quite good to do some stretch­ing and mov­ing and maybe even some yoga. So, two peo­ple to a blan­ket or a space down here and we’re going to go and do yoga.

Come on, oh my good­ness, could we look to see what Made­line is doing? She is a bal­anced tree.

 [Address­es Madeline]

Oh my – can we do it on the oth­er leg?

[Address­es the attendees]

Now shall we bend down? Whoa – who feels the backs of their legs? It’s tight some­times – that’s our ham­strings that were stretch­ing. OK, up we come nice and slow. Shall we stretch out and wel­come the world?

Dominic come and wel­come the world with your arms out straight. Leila, come on… [fades out]

Kailen Tem­ple­ton:

I’m Kailen Tem­ple­ton. I’ve had arthri­tis for com­ing up to nine years now.

Paul Tem­ple­ton:

I’m Paul Tem­ple­ton. I’m his parent.

Evans:

Now arthri­tis – peo­ple with arthri­tis JIA can­not do sport, they must keep away from every­thing – True or False?

Kailen:

False. I play rug­by and I start­ed play­ing it in Pri­ma­ry 5. I played foot­ball from Pri­ma­ry 1 to Pri­ma­ry 7. And I’ve con­tin­ued my rug­by and I’m going on next Sat­ur­day for SRU devel­op­ment because I’ve been nom­i­nat­ed by my Club.

Evans:

SRU – Scot­tish Rug­by Union? So that’s the path to pro­fes­sion­al rug­by? Any con­ces­sions made about your condition?

Paul:

No, there’s been noth­ing. On the form there’s a part if you have any exist­ing con­di­tions and that’s been filled out so we’re all good. We’re good to go.

Evans:

So how did you start that? How did you get into it?

Kailen:

Pri­ma­ry 5 I went to see an All Blacks game ver­sus the Scot­land team. And that real­ly got me inter­est­ed in rug­by and I asked my dad if I could start play­ing. I enjoyed it. Then I went through a phase of not real­ly enjoy­ing it. Then when I got into P6 I real­ly enjoyed it and I’ve real­ly enjoyed it since.

It’s been one of the main high­lights of the past few years get­ting to play rug­by with my friends and going through to com­pe­ti­tions and then, recent­ly get­ting nom­i­nat­ed for fur­ther development.

Evans:

How did you feel about him get­ting involved in rug­by because par­ents can be fair­ly pro­tec­tive, I guess?

Paul:

So, there was a lot of trep­i­da­tion for a start, my wife espe­cial­ly. It’s obvi­ous­ly it’s some­thing he want­ed to do so I thought ‘Well we’ll give him a chance and there’s a chance he might not like it’. And for­tu­nate­ly, he took to it like a duck to water.

He had a bit of a role mod­el when he was grow­ing up, told him before, you know, you have to keep try­ing to push on and try to dri­ve through this and he said ‘Ah but dad, you don’t know what it’s like, you’ve not had it, no-one else has got it plays sport.’ So, I had trawled the inter­net for a cou­ple of nights and found a rug­by play­er in New Zealand, called James Lowe, who had JIA grow­ing up and was play­ing pro­fes­sion­al rug­by for the Chiefs in New Zealand. Fol­lowed him on Twit­ter, start­ed ‘lik­ing’ some of his stuff. He start­ed ‘lik­ing’ some stuff back and then it snow­balled from there and we’ve stayed in touch.

Evans:

So, we’re not talk­ing Sun­day hack play­ers we’re talk­ing about…

Paul:

We’re talk­ing elite pro­fes­sion­als. James Lowe. Just missed out an All Black squad for a 2015 World Cup due to shoul­der injury. And now he’s play­ing pro­fes­sion­al rug­by for Lein­ster, arguably the biggest club in Europe unfor­tu­nate­ly [Evans laughs] and play­ing inter­na­tion­al­ly for Ireland.

Evans:

And you still keep in touch with him?

Paul:

Yeah, I still keep in touch. He just got mar­ried on Thurs­day so I wish them all the best.

Evans:

Thank you very much both. Best of luck with your rug­by assess­ment in a cou­ple of weeks’ time.

Kailen:

Thank you.

Evans:

I hope not to see you thrash­ing Wales over the next few years.

[Laugh­ter]

Evans:

I make no apol­o­gy – some nation­al stereo­types just run too deep.

Com­ing to the end of this edi­tion of Air­ing Pain I’ll just remind you that whilst we in Pain Con­cern 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 well-being. They are the only peo­ple who know you and your cir­cum­stances and, there­fore, the appro­pri­ate action to take on your behalf.

Do check out Pain Concern’s web­site at painconcern.org.uk where you can down­load all edi­tions of Air­ing Pain and find a wealth of sup­port and infor­ma­tion mate­r­i­al about liv­ing with and man­ag­ing chron­ic pain.

Now I can’t tell you how uplift­ing it was to spend the week­end with the Juve­nile Idio­path­ic Arthri­tis fam­i­lies and the clin­i­cians who look after them, so a huge thanks to them all, includ­ing SNAC, The Scot­tish Net­work for Arthri­tis in Chil­dren who made this fam­i­ly week­end hap­pen. Its web­site is SNAC.uk.com. SNAC – S N A C .uk.com. It real­ly is an excel­lent place to find out more about JIA and not just for those liv­ing in Scotland.

Thanks also to the pro­fes­sion­als in SPARN – that’s the Scot­tish Pae­di­atric and Ado­les­cent Rheuma­tol­ogy Net­work who gave up their time to be with their patients and fam­i­lies over the week­end. And their web­site is sparn.scot.nhs.uk and SPARN is S P A R N. It’s anoth­er excel­lent resource for infor­ma­tion and support.

Sharon Dou­glas, Chair­per­son and Co-Founder of SNAC opened pro­ceed­ings on the Sat­ur­day morn­ing so it’s only right that she should close them.

Dou­glas:

It’s been real­ly spe­cial this week­end, par­tic­u­lar­ly because we’ve had a fam­i­ly from Shet­land, which we’ve nev­er had before. I think there are a hand­ful of fam­i­lies up there. We’ve got some­body from Ben­bec­u­la and we’ve got some­body from Arran. So, actu­al­ly, three of the Islands peo­ple have trav­elled to this week­end to meet oth­er chil­dren and par­ents – to meet oth­ers and find out more about the condition.

Even when you live in a city, you can still feel alone with the con­di­tion if you haven’t met oth­er chil­dren and you might be at the hos­pi­tal but you don’t know if that child beside you has got arthri­tis or dia­betes or why they’re there, so it’s much hard­er to make the intro­duc­tions and to have the conversations.

Evans:

I was lis­ten­ing to a dis­cus­sion between all par­ents and one com­mon theme seemed to be the issues of get­ting a diag­no­sis in the first place. How do you think SNAC could get involved in improv­ing that?

Dou­glas:

We have to recog­nise that we’re vol­un­teer par­ents who have day jobs but I think, for me, it’s all about rais­ing aware­ness of JIA. And that’s been a key thing for SNAC. It’s on our Mis­sion State­ment from the moment we were cre­at­ed in 2009, one of the key things is to raise aware­ness as well as sup­port fam­i­lies, and I, per­son­al­ly, think that’s our biggest thing so, for a tiny exam­ple, from one of the talks today is that some of the par­ents are going to take leaflets – the SNAC leaflet – to their doctor’s surgery and see if they’ll dis­play them in the clin­ic or a poster from SNAC and I think we just have to work with the oth­er Juve­nile Arthri­tis char­i­ties to help them to raise aware­ness to and work, maybe, on a cam­paign with the oth­er char­i­ties that are already doing good work as well.

Evans:

The oth­er thing that came out in the dis­cus­sion is that the advice to par­ents has changed over the years.

Dou­glas:

That’s right.

Evans:

I mean some­body say­ing they had a leaflet some years ago and they showed chil­dren in wheel­chairs and splints, this that the oth­er, so treat­ment has come so far.

Dou­glas:

It real­ly has. And even my daugh­ter is now twen­ty, so she was diag­nosed when she was two. But even in her jour­ney you’ve seen the huge advance­ments in treat­ments over the years and, where chil­dren might have been in wheel­chairs a gen­er­a­tion ago, they’re real­ly not now and I think we need to be care­ful that we give pos­i­tive advice. And per­son­al­ly, our main sup­port for fam­i­lies is actu­al­ly try­ing to find ways to tol­er­ate the med­ica­tion. Try­ing to recog­nise the impor­tance of these drugs that help chil­dren and stop the joints from being dam­aged. [The med­ica­tion] is try­ing to pre­vent that long term dam­age to the joints but yet [there’s] the hor­ri­ble side effects. It’s try­ing to just help fam­i­lies to make sure that they go to their hos­pi­tal team if they’re real­ly strug­gling to just open up those com­mu­ni­ca­tions and have good rela­tion­ships with their rheuma­tol­o­gists, with their team, with their nurs­es so they can then dis­cuss prob­lems they’re hav­ing and if there is a real prob­lem with the med­ica­tion [the nurs­es can help them change]to anoth­er one. And the psy­chol­o­gy talk yes­ter­day was all about tips of tak­ing, you know, the med­i­cines which is real­ly key because these drugs are mak­ing a huge dif­fer­ence to these chil­dren’s long-term outcomes.

But all I would say, is like get­ting fam­i­lies togeth­er, chil­dren real­is­ing they’re not alone, par­ents meet­ing oth­er par­ents – it’s that shared expe­ri­ence of JIA and everybody’s sto­ry is very dif­fer­ent and it’s a very invis­i­ble con­di­tion. So, we’re all com­ing from dif­fer­ent places but I think we’ve so much in com­mon and we all recog­nise how invis­i­ble this ill­ness is, and we all just can share lots of expe­ri­ences with it – just helps fam­i­lies bond and I would call SNAC almost a fam­i­ly of parents.

END

Tran­scribed by Fiona Clunn, edit­ed by Geor­gia Gaffney


More Infor­ma­tion:

https://painconcern.org.uk/cordless-car-vacuum-cleaner-eraclean-best-handheld-vacuum/