National CRPS Rehabilitation Service, Bath – Introductory Video

National CRPS Rehabilitation Service, Bath – Introductory Video


Welcome to the National Complex Regional
Pain Syndrome service here at Bath, at the Royal United Hospitals NHS Foundation
Trust. We provide a service that’s highly
specialised for people with Complex Regional Pain Syndrome. My name is Dasha. I have CRPS. I was
diagnosed about 18 months ago after having an accident and dislocating my
wrist. I’m Adam Wood. I’ve suffered with CRPS
for five years and was diagnosed about two years ago. I’m Carolyn and I live in Suffolk and I
have CRPS. The reason people should be referred here is because we have a highly
specialised multidisciplinary team which includes physiotherapists, occupational
therapists, nursing, medical team and psychology. As well as being a highly
specialised clinical team, we also run national and international
research projects focused on Complex Regional Pain Syndrome so we are aware of the leading
treatments. We’re in fact helping to contribute to
much of the new knowledge that we know about Complex Regional Pain Syndrome. Before a referral is received we would
expect patients to have been seen by their local pain services, physiotherapy and certainly their general
practitioner. If they’re not improving or if there’s
still significant symptoms then those people would be highly eligible for
consideration within our service. If you are referred to our service then you will be
seen in the new patient appointment which will be approximately a two hour
assessment. At the end of that appointment we will make a decision with you about
whether it’s appropriate for you to stay with us in our service. The next
appointment after the new patient assessment is our pre-admission clinic.
This is usually a one-day appointment. At the end of that day, again an assessment will be made and a
decision made with you about whether inpatient care is appropriate. If that is
the case then the team will work with you to set some goals and there will
undoubtably be some work to be done between that appointment and coming in
for our inpatient rehabilitation programme. Before the patient stay, again I wasn’t really sure what to expect
coming here. I was very very nervous because it’s a long way from home. I was going to
be on my own and I had no idea what was going to happen. What made me feel more comfortable was
the physios and the OTs understood what was wrong and they could help you and they
didn’t make you feel like you’re silly. It was the first time that people
understood what I was going through and genuinely listened and then could
explain to me what was happening. When I arrived in a hospital for the inpatient
stay I first went onto the wards. All the nurses and all the staff were fantastic and make
you feel really really welcome. They’ll help you with anything. Then I’ve
met the other ladies staying with me. Meeting other people with CRPS
has been the best thing ever because at home you feel very isolated, you feel
like you’re the only one, nobody understands but to actually have other
people who’ve got it and who genuinely understand it and then
you suddenly realise “you know I have that problem too” or “yeah this is how i got around this”. After that it would be individual physio, OT, maybe psychology. If you get the
opportunity to come here, again come with an open mind and give things a try. We
try Tai Chi, pilates, something I never thought I would try. The physio was
just been just really good, you know I’ve got more movement in my leg and my hand
and arm and really helped me to take things forward when I get home. It was a
different approach – it wasn’t about “no pain no gain”, it was more about listening to your body
learning also about how my nervous system is working and what’s firing pain,
but also the support – once your home you can email and say “I
can’t do something” and carry on. Whoever will answer will say “try this or try that”, so the support networks are good. I was scared that I was going to set
off more pain by exercising, so coming to the gym while
staying here for the inpatient stay it was a great help. I realise I can do things, you know, I can
use different machines – maybe not all but enough to get me, you know, to do
something and get a better physique. I love hydrotherapy because your limbs
feel light and you can move them easier in the water. In my first stay I
really struggled with hydro – the feel of the water on my hand was
unbearable. However the second stay there has been
a massive improvement and hydro has been absolutely brilliant, you know I was looking forward to it
every day to come to do hydro. Occupational therapy – they’ve given me again the tools and the ability to start
contributing to a household again. The OT here help me put together a letter and try to
explain a little bit more about my condition and what I’ve been doing while
I’ve been staying here for the two weeks and what they recommend that I would be
able to do as well so it’s been a big help. We would have done a lot of
desensitisation – different textures and materials. Going to the sleep workshop was one of the most
helpful things whilst staying here. Thank you Claire! I struggled with sleep a lot. I could go a week without sleeping but
learning more, you know, what I can do and what I can change throughout the day it’s helped a lot. We had a talk from
Dr. Brook about our pain killers and our medication, how they affect us. Taking so many
tablets you need to know the side effects, and what’s actually happening to your body
while you’re taking them. We had the sensory workshop as well and
I use parts of that still today some with regards to music, touch, smells. At first it seemed a bit bizarre. I
wasn’t quite sure about it and now I’m a big advocate of it. We’ve seen a psychologist. You struggle
to talk about your feelings and at home you you don’t really have anyone to talk to
mostly, and having that somebody to understand what you’re going through and help you with anxieties and depression.
I felt a lot better after talking to the psychologist. Our aim is to improve function
and quality of life. We hope that pain will improve along the
way, but our primary purpose is to get people back functioning again and feeling
like themselves again. If I was to give anybody advice with regards to coming here,
it’s have a go at everything – get involved and have a go, because at the end of the day if
you come here and you’re not prepared to have a go, it’s up to you to make a difference and
and it’s for you to take these things and move forward on afterwards. There’s
absolutely no question that I’d recommend people with CRPS to come here.
It’s just absolutely perfect and has been a huge help. Yes, I thoroughly recommend this hospital
to anybody suffering with this, it’s a gem. If you are coming onto a programme, just
try everything. You know, you have nothing to lose but
you can always just gain from this stay.

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