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| Miss T at Great Ormond Street Hospital for her intensive physiotherapy rehab. |
Miss T has Juvenile Idiopathic Arthritis (JIA) – a painful
debilitating auto-immune condition. At present, there is no cure. Treatment
involves drugs (such as Methotrexate) that reduce the immune system to try to
slow it from attacking its own joints, medication to reduce the side-effects of
other medication, regular blood tests to monitor side effects, supplements to boost depleted levels of vitamins (such as
Vitamin D) and a range of therapies (physiotherapy, hydrotherapy, exercise to
build core strength, and classes to build confidence).
In April 2018 Miss T attended a two week physiotherapy
course at Great Ormond Street Hospital (GOSH). This post is for anyone
approaching a similar stay at GOSH to help you know what to expect and a few
tips we picked up (some fab tip from others- thank you, you know who you are - and some we identified ourselves) that may make
things easier.
The Hospital Hotel
GOSH have a fantastic facility in Weston House – just over
the road from the hospital itself. Once your place on the physio rehab is
confirmed you will usually be offered a space in the hotel. Be aware that there
is no guarantee you will be in Weston House – sometimes you will be placed in a
local private hotel if Weston is full (as it is used for accommodation for a
whole range of services, not just physio rehab). If you live fairly locally, you
may prefer to commute in – but be aware of the start times for sessions so you
don’t miss anything.
The accommodation is fairly basic, but clean and a hugely welcome facility that is provided – it is free for one parent and the child to stay, so saves a fortune in
commuting train fares or private hotel bills. Our room was typical, with three
single beds (some have two), some cupboards, desk, TV and ensuite bathroom. It
is cleaned each day by the housekeeping team, with fresh towels as needed. The
door key is a credit-card sized electronic pass card in a badge holder.
Some tips:
- Bring a lanyard with you if you have one, to
carry the key around. This was suggested to us, and I was glad to bring it – it saves forgetting the key when going backwards and forwards to the kitchen.
- Bring a towel or two. Some are provided, but they are quite small, so if you plan on having a shower during your time here, bring a decent sized towel!
- The beds are ok, but the mattress, duvet and pillow are wipe-clean plastic – very hot in warmer weather, so be prepared to dress light at bedtime. Apparently the rooms can get chilly in colder weather, so bring layers if here in the winter.
- Some people have found the pillows very thin so if you need a plump pillow, it may be best to bring your own.
- Bring a tea-towel, too. The kitchen has paper towels, but they are not great when you dry up.
- The kitchen is well equipped, but don’t expect to be competing with Jamie Oliver whilst you are here. Whilst the basics are here, a few things you might want may be missing (slotted spoon / colander / sieve, for example).
- Make and bring a ‘do not disturb’ sign for your door. It didn’t happen to us, but one or two of the housekeeping team have apparently been a bit over-enthusiastic when arriving to clean rooms!
While we were here, we paid a £10 returnable deposit for our
room key, and another £10 deposit (also returnable) for a TV remote control…
not that we watched TV much. Our first remote control didn’t work, so we
swapped it for a second.
For week one, you will usually arrive on the Sunday (and go
home Friday). For week two, it is Monday to Friday.
The physio rehab
Before you arrive you will be sent a pack of information.
Top tip – read it all before you come! I know it is quite long, but it is
useful to see in advance. Make sure you have a list (even if only in your head)
of all the health professionals your child is in contact with, contact details
of your child’s school, and details of any current or recent problems relating
to the JIA.
On the first Monday morning, you will spend time on the ward
for clinical assessment (height, weight, blood pressure, swabs for infection
and so on) followed by an assessment by the physio team. There is some waiting
around, so bring something for your child to do.
The nursing team were excellent, and so were the physios.
Very thorough assessments, lots of questions, and lots of joint checking and
manipulation. Then we were given a whole pack of paperwork – some to fill in
that morning, some to record progress, and some for information. So another
tip, again borrowed by someone who went before us:
- Bring an envelope or plastic wallet for all the
paperwork you get given!
If you have any questions about what is happening, where to
go, or who to speak to, this is your first (and possibly best) chance to do it.
The physiotherapy is tiring. It’s hard work. But with the
support and encouragement of each other and the physio team they keep going.
They get stronger. They notice improvements. And, although exhausted, tired and
emotional, they come out happier and more confident than when they go in. The
class is mixed, with children experiencing a range of different health
conditions. Some are more mobile than others, and there is a good mix of ages. As
the course is usually two weeks’ long, they overlap so there are ‘experienced’
kids alongside the newbies. All of this helps develop a nurturing environment
where they all help each other out. You will drop your child off to be taken to the physio gym and at the end of the session, they make sure the kids are taken to the hospital school where you will pick them up at the end of their morning school session.
School
Hospital school starts on Tuesday morning, but we completed
the paperwork and took it straight down so Miss T could meet her teacher. The
school was assessed as Outstanding by Ofsted, and the kids there were clearly
enjoying their time in the classroom. The school follows national curriculum
syllabus, with different subjects through the week and regular visitors to
supplement the excellent regular team. Miss T met a chef on her first session
and enjoyed cooking pasta salad, cake and brownies (which were decorated to an
amazingly high standard with cream, chocolate straws and spun sugar!) Later in
week one Miss T watched over eggs and saw them hatch, cuddled day-old-chicks,
learnt computer coding, was filmed for hospital TV (and an ITV documentary),
met the hospital support dogs, painted, drew and wrote, and overall had a
fantastic fun-filled time. Week two was equally full-on, with different
visitors and activities, and just as much fun.
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| Miss T with her culinary creations. |
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| Miss T was able to cuddle a day-old chick after watching it hatch at the hospital school the day before. |
Sessions
There are a load of sessions throughout the two weeks – pain
management classes, meet-the-physio, briefings, assessments – and it is
important you go to all of them. It does take time, but they are all valuable.
Between sessions parents do get quite a few breaks – time to catch-up with
other parents, and perhaps hit the Lagoon coffee shop, or get on with work if
you have brought it with you. Make sure you bring something for you to do, as
well as for your child, to keep you all busy during the down-times. We (as
parents) had teaching sessions from an Occupational Therapist, Physiotherapist
and Psychologist, all of which were really helpful. The kids have similar
teaching before one of their physio gym sessions, and Miss T was able to tell
me all about the different types of pain and how to manage her chronic pain.
Those tips have really helped her since returning home, and she has been teaching
the rest of the family about ‘square breathing’ and her ‘happy place’ where
pain cannot affect her so much.
At the end of the afternoon, you are expected to do "functional excercise" - a very real and important part of the rehab to ensure joints don't stiffen up at the end of the day and to build
strength, stamina and confidence for your child. There is load to do locally,
so no excuses! In the local area we loved visiting parks, museums, restaurants and so on. Miss T looked completely exhausted on day one, but loved going
to Coram’s Fields with a new-found friend and spent a long time exploring and
having fun. Needless to say she really was exhausted by the time we got back to
the hotel! But the physios do drum-in to the kids how important it is to keep
moving.
Some places we and others visited included:
- Coram’s Fields (just behind the hospital), which
has play areas and animals to see.
- The British Museum
- The British Library
- Platform 9 ¾ at Kings Cross Station (be aware if you want a photo there are huge queues, but Miss T was happy just seeing it and visiting the shop!)
- Oxford Street
- Theatres (it is a short journey to the centre of the West End)
- The Brunswick Centre – a short walk to a load of cafes, restaurants and a selection of shops (including a huge Waitrose to stock up your food supplies)
- The beautiful GOSH Chapel (on the ground floor, behind the main reception) is well worth a visit as a peaceful, quiet space.
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| The British Library's iconic book bench. |
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| Platform 9 3/4 at Kings Cross station. |
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| Visiting the Chapel at Great Ormond Street. |
Other health
professionals
As well as the physios, a number of other health
professionals are available at GOSH and may meet with your child at some point
if need be. They make the arrangements, be it with podiatry, the rheumy team or
occupational therapy, and can refer your child on for further assessments that
may be needed.
Home work
There is a diary to complete each day to give feedback to
the team on what went well and what was difficult. This helps you and your
child keep in touch with the team.
And when you go home… lots more homework! You will be given
an exercise programme to complete at home. This is also really important as it
helps to keep building muscles up over time.
Miss T
When she was first assessed, Miss T scored a leg-strength
score of 14 out of 30. By the end of week two, she was assessed as 27 out of
30. The improvement was huge. Her confidence also grew hugely, both in the gym
and out and about. She still has ankle pain – and we are currently waiting for
another MRI to see what is happening with
that ‘mystery foot’, but is doing her
exercises every day before school. It’s amazing to see her doing 30 repetitions
of 3 different exercises on each leg, with a 1kg weight attached, every morning,
with a huge grin on her face. A couple of weeks ago, she couldn’t have done it.
So the physio rehab really helped her.
As a reward for all her hard work, we've ordered her a #JiaWarrior t-shirt from the
Juvenile Arthritis Research shop. Can't wait for it to arrive - she's grown in confidence in being able to talk about her arthritis more and so hopefully this t-shirt will help her raise awareness about children like her who have to go through so much in the fight against arthritis.
