Hi, I’m Calum. I’m an MS reporter for the
MS Trust. In this video I’m finding out about moving from children’s to
adult health services. This process is called transition, but what exactly is
transition and what does it involve? Transition basically means making plans
so you’re prepared to move to adult MS services when the time is right for you.
To find out more about what happens during the transition period and who
will support you, I spoke to two MS nurses to ask them some questions. Hello,
my name’s Mary. Hello, my name is Sharon. We’re both nurses that care for people with MS.
I work in the children’s neurology service here at Addenbrooke’s so I often see young people
who have MS. And I support adults living with MS but I do see young people
who’ve recently moved over from children’s services. Great, so my first
question is, why do young people with MS have to move to adult services in the
first place? The main reason is to make sure you’re getting care that’s right
for you and your needs. The health professionals that make up your new
adult team will have more experience caring for young adults and will be more
suitable supporting you as you grow up. As well as this, your teenage years are a
big time of change both mentally and physically. You may feel like you’re
beginning to outgrow children’s services so an adult setting may suit you better
as you get older and become more independent. OK, so it’s all part of
growing up and becoming more responsible for yourself. So when does transition
start? Will it be at a certain age? OK, so there’s not a strict timeline. Often
it might depend on the things to do with you and what’s going on in your
life, like exams or whether you’re on medication or not, so there’s no set age.
Your health professionals might start talking about transition
when you’re about 12 or 13, but the actual transfer will usually be a few
years later when the time is right for you. Usually you will have transferred to
adult services by the time you’re 18, but it might be earlier for some and later
for others. That’s good to hear that it can be fairly flexible to suit you. So
who will be there to support you through the transition process? You should be
given a specific person to help you through transition from start to finish.
They’re often known as your named worker or key worker. They’ll be there to
help you get prepared before you transfer and will also be there if you
need any support in the months after you’ve moved to adult services. Your
named worker should be a health professional in your team who you
already have a good relationship with, such as your current MS nurse. What kind
of things will they do to help you prepare for the changes? There are lots
of ways your named worker can support you. They can help you learn more
about your MS and the medication you’re on. They can help you build up your
confidence so you feel comfortable taking a more active role in your
appointments and maybe even attending them on your own. They can help you to
get to know the adult service team before you transfer. This might include
visits to the adult service and joint appointments with a health professional
from your current team and someone from your new team. They may
encourage you to create a folder about yourself and share it with your new team so
they can get to know about you, your MS and your goals for the future.
They’ll go through the help and support that’s available to you, including how
you can get in touch with the health professionals in your new team when you
transfer. They may be able to direct you to peer support groups or put you in
touch with other young people who are going through or have recently been through
transition. Finally they may talk to you about living a healthy lifestyle as you
begin to make more choices for yourself. This includes things like eating a
healthy diet, taking lots of exercise, not smoking, not drinking very much
and sexual health. All of that support sounds great!
Will you have to go to a different hospital? Well, you might not have to. It
really depends on the services at your current hospital and in the rest of your
area. It also depends on where your needs will be best met. You might choose to go
to a specialist hospital that’s further away from home, rather than one which is
closer but has less expertise in MS. If you do have more than one choice, it can
be useful to ask your named worker if it is possible to arrange to meet the
different teams. If that’s not possible, it’s worth visiting the hospital or
looking at their webpages to get a feel for them. OK, so you might not have to
move hospital. Meeting the new team sounds like a good idea.
How will the new service be different? In adult services there’ll be more emphasis
on you taking responsibility for your own care.
You’ll notice that letters are addressed to you rather than your parents and your
team will talk to you directly in appointments and you’ll be the one
asking the questions. You’ll also have to start organising your own appointments.
You’ll probably also notice a difference in the environment. There may be older
people in the waiting room who’ve been living with MS for a long time. It will
also generally be busier. There are more adults with MS than children. Because
it’s busier they may take a little longer to get an appointment and it
might not be possible to speak to your MS nurse or neurologist straightaway. You
may have to be a little bit more flexible when booking appointments. They
may not be able to arrange them around school holidays like they did before. You
may need to get your first appointment with your adult team booked in around six months
in advance to make sure there is no gap in the care that you receive. When you
move to adult services, you’ll get to choose who you want in your appointments.
Adult services will welcome whoever you want with you. You might want your mum or
dad to be there or your partner or a friend. Going on your own is fine too.
Overall it’ll be a big change. There’ll be lots of new people in your team and
it may take a little while to get used to them all. You might also have to get
used to finding your way around a different hospital. But remember, however
scary it may seem at first your new adult team are still there to look after
you and your health. Quite a lot to take in then! How involved would a young
person’s parents be in the transition process? Transition is all about you but
your family can still be involved. It’s a gradual process with you slowly taking
more responsibility and your parents taking more of a backseat. It can be a
difficult time for them too. They’ve been used to being in control and it can be
hard for them to let go and get used to being less involved in your care.
Remember, although you’re starting to take more responsibility you can still
ask your parents for advice along the way. It can be helpful for you all to
talk about how you’re feeling and any worries you have. Thanks Mary and
Sharon, that was really helpful. Here are the main things I’ve learnt about
transition. Number one, transition involves being more in control of your
own healthcare. It’s all about being treated more like an adult, as well as
feeling and acting like one. Number two, there’s no set age when transition
happens. It depends on you, what’s going on in your life and the services in your
area. Number three, you might have to change hospital but you might be able to
stay where you are. Number four, you’ll have plenty of support
along the way, mainly from your named worker but also from other
health professionals, peer support groups and your parents. And finally, number five,
let’s be honest, it’s a big change and you’ll have to get used to new people
but that’s all part of growing up. So Mary and Sharon were really helpful but
I thought it’d be good to speak someone who’s actually been through it all. To
finish off the video, here’s Abigail talking about her transition journey
with her mum, Nicola. I’m Abigail. I was diagnosed three years ago when I was 14.
For the process of going to adult services pretty much I was told
by one of the nurses that for my first course of Lemtrada treatment that I
was going to be on the children’s ward and then for my second course of
treatment I was going to be on the adult ward.
So I was kind of slowly introduced to it through that. During my first course of
treatment, the MS nurse came to me to obviously tell me what was going to
happen for my second course and explained obviously about the process of
moving from children to adult. She’d tried to gently
like reassure me and make sure that I was okay to move, rather
than just kind of throwing it at me. I was gently reassured
through being told that I’d have a room by myself so that obviously it
wouldn’t be so frightening having to be moved. I was, when I was diagnosed I
was kind of in between two hospitals. When I was getting better I
got the choice to obviously which hospital I wanted to stay at. But they
are both amazing, they were both absolutely incredible.
They were such a nice team, both of them, and it just felt quite nice
having the choice because I mean because I was considered a child at the time
so it felt quite nice to get a say, rather than obviously
having the decision being made for me. I do miss, I do miss the, like even though
I know I’m a child I miss like the special stuff in the child ward.
It felt nice because obviously they were making such a big deal and, you
know, obviously I’m a teenager, I’m fully grown, but it did feel nice to be made
like quite a big fuss over. It may seem incredibly scary but once obviously you’re
there it’s not that terrifying. I mean you are still in an adult ward even
though you do consider yourself quite young. Obviously you are there but it’s not too
terrifying because you do know more, depending on whether you want to
know more. I’m Abbie’s mum. I’m not going to say my age. My daughter was
diagnosed three years ago so we’ve been supporting her through her MS from
child services to adult services since. We met the MS nurse from the children’s
team and then one of the MS nurses we hadn’t met before
from the adult team and she explained exactly what would happen and what she
could do because obviously it was a bit daunting for Abbie to move from children’s
to adults’. There were certain things they could do to help support us
through it. Going into adult services Abbie was 16,
not quite 17. It’s quite daunting to suddenly go from being on a children’s
ward where there’s lots of things, lots of children, you’re busy, there’s things
going on all day, to suddenly be on an adult ward. She was in a little room on her own
but they managed to sort of do it so she wasn’t with other people, especially people that were
further on maybe with their MS which could have been quite scary for somebody
who’s quite newly diagnosed. We would be there with her for any of the
chats with the nurses just so we would remember because Abbie would sometimes
struggle to remember the things she needed to remember or would get
muddled with the things she needed to remember and then we’d just go over
things with her again or clarify things for her that she wasn’t sure about and
just be there for her. Bring the tea and coffee,
you know, and things when she was having treatment and so she wasn’t on her own.
I was there the whole time. If you’re not sure ask and if you’re still not
sure ask again. There’s nothing, it’s never too much trouble. But just ask
questions and it’s not as scary as you think.