What support and services are available for children or teenagers with MS?
So, within our team that we have, we have a psychology service. We do point them to the charities that we know of, MS charities nearby where they’ve got support and information. And then depending on their needs, we will point them also – it’s easier, I think, in paediatric services to be able to refer on to other teams for support – but we have a really good psychology service that work very closely with us and they join us for clinics and the patients can see them either before or after their medical appointment and we keep that quite separately as well to all the medical stuff, so they can talk about their feelings with or without their parents, separately, ‘cos they’re obviously going through puberty as well as everything else. As well as being just a teenager and then having MS on top of it and whatever else they have to deal with as well, so it’s, that’s quite an important service that we offer, which I think is very, very helpful. Not sure what we’d do without it, actually, so…
I mean that kind of leads me on to another question, that obviously with adults being diagnosed with MS, whatever the stage, if it’s the early twenties, late twenties, or whatever age it may be, the psychological effect tends to perhaps, it can come on immediately or it can be more of a delayed reaction to the diagnosis and living with the condition. But I think adults are, to a degree, more equipped to deal with that, they’ve got a lot of other avenues they can go to. In your experience, for the younger ones, whilst you have this amazing support that you’re kind of putting in place for the – thank you very much – for the psychologists and the help there, do you feel by doing that at the initial stages it helps the child or the young person prepare more to deal with it on a day in, day out basis, or with their lives moving forward, because it’s obviously something that they will live with forever. And like, you know, you’re young, you go through puberty and, you know, you’ve just got the general isms that throw themselves at you, life in general, that by having these things coupled with something that many aspects and elements of the condition are beyond your control, yet if you’re kind of tooled up with the mental knowledge on how to deal with it, have you seen that’s been very successful in that way to help them?
Absolutely. So what we’ve been trying to do in the last few years is hold a MS day for our families and our teenagers. So we’ve tried a couple of different things where it’s just all about the condition, and then we’ve tried it around transition about going to adult services. And what we find is, is not really, obviously all our young people have choices, but we kind of have the psychology services, we don’t really use it as a choice, we kind of say, oh, and after your appointment you’re going through. Because when we, obviously if they don’t want the psychology support then we do not force them at all, but when we say it’s part of our service and actually every young person is offered this and this is what they get, it’s more acceptable then to have psychology service. But I think actually having, having that and having the support and services and maybe able to meet other young people around their age that have a similar condition, I think it really normalises it almost. Maybe not quite, because everyone’s slightly different, but it makes it more real and actually, d’you know what, it’s going to be alright.
Yeah. And do you find, I guess from speaking to them and seeing what the families and the feedback that they want to get involved, so I know myself and various other people who’ve got MS, we off the back of – off the back of, that’s a really bad term – through being involved in doing various things, we want to be involved in the community and more raising awareness about MS. So do you think that’s, do you see those kind of signs in the younger ones, not maybe now, but the kind of seed’s been planted, they want to kind of take ownership of it, you know, you have to really take ownership and have an understanding for yourself. D’you see that kind of…
I think it’s fifty-fifty.
I think 50% of them…
Big campaign for MS interview…
…yeah, will be like that and will want to get involved in everything and will want to get involved in every interview that every charity’s offering, or the other half will be like, oh, I don’t have MS.
So like pretty much like adults as well.
And just completely in denial and actually, you sometimes find in that situation that it’s the parent that’s more worried for their future than the actual teenager.
Yes, yes, I would say that, yeah, yeah.
So, you know, we’ve had in clinic before as well where the parent will be more distraught than the actual young person.
The younger person’s got it under control and has got it together.
The parents are having…
Absolutely, they’ll be the ones that it’s in tears and they’re the ones that have to come to terms with that diagnosis more than that actual young person who’s just taken it in their stride, to be honest, most of the time. So, yeah.
I think that’s good though.
[ends at 04:56]
What support is available for children with MS? Can you get extra help as a parent of a child with MS?
Find out more with Nat and Katie Hanson, a Clinical Nurse Specialist.
MS Reporters are people living with Multiple Sclerosis. They’re interviewing world leading experts and making sense of the information they provide.
MS Reporter: Nat
Expert: Katie Hanson, Paediatric MS Nurse