Autumn/Winter 2015

Autumn/Winter 2015
The magazine for everyone living with EB
Climbing
Snowden
See page 10
Plus
•Occupational Therapy
•#ShowYourSeams
•Coming this November:
EBS meeting 2015
and more…
Cycling 110 miles with EBA
– see page 3
Psychosocial support for you
– see page 5
This edition sponsored by Clinidirect.
www.debra.org.uk
Welcome
Welcome to the autumn edition of In Touch
As we enter the closing months of
2015, I’d like to take a moment to look
back at the year. We held our very first
members’ weekend, we’ve funded a
number of high quality research projects
and employed a new DEBRA Clinical
Fellow as well as funding EB podiatry
clinics and additional hours for specialist
EB dietitians, enriching many patients’
experiences. In addition, we’ve provided
hundreds of DEBRA members with
information and support through the
Community Support team. We’re here
to support you and we’re happy to help.
As demand for medical and community
support continues to rise, it remains
a privilege for DEBRA to work in
partnership with the NHS. The hard
work of the EB clinical and nursing
teams across the UK makes it possible
to provide an enhanced healthcare
service to people living with EB. I’d
like to thank all the teams for their
dedication to providing the best
possible care and support to people
living with EB. See page 8 for just one
example of this partnership in action.
DEBRA UK is also proud to be
hosting EB-CLINET and the DEBRA
International conferences for clinicians
and DEBRA colleagues from around
the world in London this year (24 – 26
September), providing unparalleled
opportunities to share knowledge and
expertise. Keep an eye on our website
for the conference report.
Please keep telling us how we can
improve our support to you. Email
[email protected] with any
comments or suggestions about this
magazine or DEBRA’s work, or contact
me directly.
Best wishes,
Claire Mather
Director of Healthcare, Membership
and EB Community Support
28 November 2015: EB Simplex
Meeting (Scotland and the North)
Prof. Irwin McLean and the team from the University of Dundee will be holding
this year’s EB Simplex (EBS) Patient Meeting at the University of Dundee on
28 November. We’ll let you know as soon as we have further details – keep
your eyes on www.debra.org.uk and the next issue of In Touch. Prof.
McLean and the team hope to hold further meetings for those in the north of
England (spring 2016 – tbc) and the south of England (autumn 2016 – tbc).
Connect with other people
living with EB
Visit the EB community on www.rareconnect.org to connect with each
other, share experiences and find helpful information and resources.
Visit us on Facebook at www.facebook.com/DEBRACharity for the latest news from DEBRA.
and follow us on Twitter @charityDEBRA.
In this issue
Member’s story
10
Psychosocial
support for you 5
Occupational therapy
needs you
14
Community Support and
Healthcare can help 8
Research16
EB bereavement support 13
In Touch
is looking
for you
If you are a DEBRA member
living or working with EB and
have a story to tell, a piece of
news to share or an idea for
an article you would like
to see in In Touch, please
email Miranda Lloyd at
[email protected],
call 01344 771961 or write in
using the details on the back of
this magazine. Thank you!
Disclaimer:
Articles in this publication have been written by people living with EB who have found certain products or services useful. DEBRA does not endorse any products or services mentioned in this publication,
and will not be held responsible for any consequences arising from the use thereof. DEBRA is not responsible for the content of any external websites.
2
DEBRA In Touch Autumn/Winter 2015
...see page 18
Your news
‘I’d never have dreamed
I’d be where I am now’
DEBRA member Phil Huitson talks about cycling with EB Acquisita (EBA):
When I was about 10 years old my dentist noted that I had
gum disease – it quickly became apparent that there was
a bigger problem when I started to blister on my hands
and feet. The condition worsened to the point where it
became a significant issue all over my body and I was
sent for tests in Newcastle and London before I was finally
diagnosed with EBA. I think the worst times were when
my mouth was damaged. Anything else you can bandage,
but you have to breathe and eat – soothing gels offer
temporary relief at best.
We spurred
each other
on in our training
Recently, I found that experimental treatments I underwent
as a teenager have damaged my kidneys. However, the
positive aspect of this is that the medication I take for my
kidneys keeps my EBA in check. In fact, life is pretty good
at the moment!
Lately, I’ve even been able to take up cycling again –
I cycled over 3,000 miles last year alone. Recently, a friend
of mine (who was very supportive during the hard times)
and I cycled the 110 miles from Manchester to Nunthorpe.
‘Wouldn’t that be fun?’ we thought, and that was that –
we spurred each other on in our training from then on.
I thought it would be the ideal opportunity to raise awareness
and funds for DEBRA. At the time of writing I’ve raised £1,167
via JustGiving (www.justgiving.com/Phil-Huitson).
A massive thank you for the very generous donations it’s
both heart-warming and humbling to have raised this much
between us. This money will help make sure DEBRA can
continue to fund research and provide care and support. I
think one of DEBRA’s biggest achievements is the publicity
they have generated about EB.
My condition has settled, I have a wonderful wife, a lovely
child and a good job. In the difficult times at school as a
teenager and even as a young adult, I’d never have
dreamed I’d be where I am now.
Phil Huitson
Phil getting ready for the ride.
Go to page 17 to read more about EB Acquisita.
...see page 18
DEBRA In Touch Autumn/Winter 2015
3
A day in the life of...
An EB Clinical Psychologist
The alarm goes off. After breakfast I look
over my notes and think about each of
the staff and the patients I’ll see today.
Our cat loves to sit on my shoes –
before leaving, I remove the hair she has left behind.
7am
Driving to work, I put some music on –
it’s important people look after their own
wellbeing by doing things they enjoy, even
when there isn’t much time.
7.45am
I get to work. Monday, a clinic day, is the
only day all of the multi-disciplinary team
are together. We discuss the people
coming to clinic, review their test results and consider any
clients the team are concerned about. Confidentiality is
very important – I look at my notes to see whether they
have told the team or their family that they are seeing a
psychologist before I mention it.
8.30am
Clinic starts. It can be overwhelming to
see so many faces in one room, so I try to
put people at ease. I spend time with new
clients separately, introducing myself and talking about the
sorts of things seeing a psychologist can help with. Some
people see me for therapy, others are referred to local or
specialist services.
9am
A client has some good news – they have new teeth! Our
therapy sessions have focused on dental phobia and they
have now been able to see the specialist dentist. They have
worked so hard – it’s brilliant to see them reach their goal.
Clinic finishes. The consultant, podiatrist,
dietitian, pain consultant, nurses, DEBRA
community support manager and I clarify
anything which needs to be done. Referrals are made to
the specialist dentist, eye clinic and gastroenterologist. I
write letters to a client’s GP asking them to discuss local
support for someone struggling with low mood.
12pm
12.30pm
Lunch with the team – talking about life
outside work helps us to support each
other, communicate effectively and work
well together.
Meeting with Sondra and Zainib from the
DEBRA Community Support team – we
work together to support clients. We
discuss the DEBRA webpage for remembering people
who have passed away.
1pm
Another meeting – this time with a
psychology student who is researching
EB. She would like to attend the EB clinic
– we clarify how the research will help people with EB and
2pm
4
DEBRA In Touch Autumn/Winter
Spring 2014
2015
Dr Kate Martin.
how clients can contribute if they wish. Increasing
understanding of EB should be encouraged, but I’m
mindful that EB can seem a novelty because it is so rare –
people can get fed up with being ‘researched’, particularly
if they’ve had bad experiences in the past.
Supervision session with the EB nurses.
This helps us work better as a team and
improve our service. Without revealing
names, we discuss a client the team are struggling to
understand – they are not taking their medications and do
not attend appointments. The team is worried – reflecting
on the client’s perspective helps us to understand why the
client may be behaving this way and respect their
decisions while offering the support that is needed.
2.30pm
Therapy session with a client who is
finding it difficult to manage pain from
increased walking in a new job. We’re
working on ways to boost their confidence in explaining
what they need to manage their EB and considering the
deeper reasons why they do not want to appear different
from their colleagues.
3.30pm
I check my messages. There’s a call from
a counsellor at a community Mental
Health service – I’ll send them some
literature about EB.
4.30pm
It’s important I look after my own
psychological wellbeing so that I can
remain compassionate and available for
others. I write tomorrow’s to-do list and set off for a
refreshing walk in the woods. Tomorrow’s going to be
another busy day.
5pm
Dr Kate Martin – Clinical Psychologist, Solihull Hospital
...see page 18
Psychosocial support
Meet the Dermatology
Psychosocial Team at Great
Ormond Street Hospital
Having a skin condition like EB can have an impact on a young person’s development
and quality of life as well as on their family. Talking to a member of the psychosocial
team can help you find solutions to these challenges and lead the life you want to lead.
•We work with young people living with EB, their parents and siblings
and other professionals and services.
•We like to support wellbeing in young people by answering questions,
listening to worries and providing support and advice even when things
are generally fine.
•We can help with specific problems to do with EB or with common childhood
and family problems that are trickier because of EB.
•We can help when families have lots of other difficult things to cope
with in addition to EB.
•We can help to find you practical support in your local area.
Some examples of the things people talk to us about are:
•how EB might affect their child’s development now and in the future
•coping with treatments like needles or dressing changes
•coping with EB symptoms like pain and itching
•helping with toilet training, eating or arguments
•how to balance EB with family life
•managing difficult social situations like teasing and staring or explaining EB to others
•self-esteem and confidence
•feeling sad or worried
Who are we?
The dermatology psychosocial team at Great Ormond Street Hospital is led by Dr Kristina
Soon, clinical psychologist. Also in the team are Dr Fiona Jeffries, clinical psychologist,
and Fiona Coldwell, social worker and Changing Faces practitioner. Chloe ThompsonBooth, trainee clinical psychologist, is on a 12 month placement with us.
‘Kristina is very understanding and
really helpful when sorting things
out and a really good person to
work with. I used to be terrified of
blood tests but Kristina helped me
… feel safer and more comfortable
in having it done.’ Gabriella, 10
‘[The sessions were] very family
orientated and gave long and short
term solutions…we [now] feel we
are able to give Harry a ‘normal’
childhood. It has reduced overall
stress levels [and] helped Harry
to transition into the formal school
environment feeling safe and
happy.’ Harry’s mum
‘I was listened to and given advice. I
felt comfortable talking to Fiona about
my worries and doubts.’ Eva, 16
‘[Chloe and Kristina] listened to
my daughter with patience and my
daughter feels relaxed and gets
less mad at me.’ Manju’s mum
Psychosocial support at
other centres
If you think psychosocial support
might be helpful, please ask
your EB nurse or doctor at your
specialist centre for EB for a referral.
In Scotland, please contact your EB
nurse for referral to local services.
Image credit: Natasha Rooney.
Talk to us
If your child is a patient at Great Ormond Street Hospital and you think input from the
psychosocial team might be helpful, please ask your EB nurse or doctor for a referral.
Feedback from
our patients:
Meet the team (left to right): Chloe Thompson-Booth, Fiona Jeffries, Kristina Soon and Fiona Coldwell.
...see page 18
DEBRA In Touch Autumn/Winter 2015
5
Spotlight on governance
How DEBRA works: spotlight on governance
What do trustees do?
DEBRA’s trustees have responsibility for:
•representing the views of
DEBRA’s members
•governance of the charity
•choosing how DEBRA invests
in research and services
•shaping DEBRA’s priorities for the future
•ensuring DEBRA continues to
achieve its aims
DEBRA’s board of trustees
Up to 15 people can be part of DEBRA’s
board of trustees. Trustees must be
members of DEBRA. Up to eight trustees
are elected by DEBRA’s members and
up to seven trustees can be appointed by
existing board members. Trustees serve on
the board for a term of three years.
Some of your trustees (left to right): Jim Irvine (Treasurer), Graham
Marsden, Scott O’Sullivan, Tim Powell, David Spence (Chair), Jo
Merchant, Simon Cuzner, Mike Jaega (Vice Chair), Simone Bunting.
DEBRA has six committees and a Medical and Scientific
Advisory Panel. These play a very important role in
informing the board’s decision-making.
The Nominations and Governance Committee
•ensures DEBRA has a board of trustees with the mix
of skills and experience needed to enable the charity to
deliver realistic business plans and strategies to achieve
its overall aims
•makes sure trustees are appointed legally and in line
with DEBRA’s Articles of Association
•oversees the effectiveness of the board and DEBRA’s
committees
The Finance, Risk and Audit Committee
•ensures the board has the information needed to enable
it to discharge its financial responsibilities
•monitors DEBRA’s overall financial position
•examines DEBRA’s accounts
•checks the financial viability of annual budgets
•considers any matter relevant to the financial
responsibilities of the board and makes
recommendations accordingly
The Charitable Activities Committee
•advises the board on matters related to priorities in
research, health, membership and community support
•reviews the annual budgets for all charitable activities.
For example, this might include the budget for community
support and research grants, the enhanced healthcare
service funded by DEBRA and the DEBRA holiday homes
•receives recommendations from the DEBRA International
Medical and Scientific Advisory Panel (MSAP) on which
research projects to support
•makes recommendations to the board on funding decisions
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DEBRA In Touch Autumn/Winter 2015
The Retail Committee
•ensures the board has the information needed to
discharge its legal responsibilities
•monitors DEBRA’s trading activities and the financial
position of DEBRA’s shops
•considers any retail-related matters relevant
to the responsibilities of the board and makes
recommendations accordingly
The Fundraising and Communications Committee
•ensures DEBRA is equipped to increase its fundraising
income and the reach of its communications
•provides the CEO and the Director of Fundraising and
Communications with the information needed to develop
a vision and strategy to enable DEBRA to achieve its aims
•monitors fundraising budgets and processes
•ensures compliance with legal regulations and good practice
•decides on action to be taken in the event of any breach
of regulations
•makes appropriate recommendations to the board
The DEBRA UK International Committee
•advises the Senior Management team and the board
of trustees on any matter related to international affairs
which are relevant to DEBRA UK
The DEBRA International Medical and Scientific
Advisory Panel (MSAP)
•reviews all research proposals received by DEBRA
•makes recommendations for funding to the board
To learn more about DEBRA’s current trustees please visit
www.debra.org.uk\ourtrustees. If you are interested in
becoming a committee member, or would simply like more
information, please email [email protected] or
call 01344 771961.
Dawn Jarvis – DEBRA Company Secretary
...see page 18
Spotlight on governance
Why I became
a trustee
Welcome to
Tracy Scott –
Administrative
Assistant
Image credit: James Bastable Photography.
My role is to provide
administrative support
to Sharon Fisher and
Debbie Johnston, the EB
Clinical Nurse Specialists
in Scotland. Based at
Glasgow Royal Infirmary, I make sure the office is
organised and all information is up-to-date. I enjoy
the variety in my job and getting to know patients
and their families. My typical day involves dealing
with enquiries on the phone and by email in a timely
manner. I check my diary to see what Sharon and
Debbie’s schedules are and then get stuck in! No
two days are the same and the job is very rewarding.
New trustee Rhian Edwards (right) with DEBRA EB Community Support
Manager Zainib Hussain at this year’s Members’ Day.
Earlier this year, I was appointed trustee for DEBRA. My
ultimate goal as a trustee is to have a positive impact on
the work of DEBRA and raise awareness of EB. EB and
DEBRA, I feel, are frighteningly unknown in South Wales,
where I live. A few months ago I was forced to call the outof-hours doctor, and had to explain what EB was before
he gave me the medication I needed. This was an eyeopener: I knew I needed to try to do something to create
awareness in my own area and more widely. I’m lucky
enough to have the time to commit and I held my first
fundraising event at the beginning of July too.
Another reason for standing for the role of trustee was
because I wanted a way of thanking DEBRA. DEBRA
continues to support me and supported my parents when
I was growing up. If it wasn’t for that support I wouldn’t
be the person I am now and I probably wouldn’t have
been able to cope. I would especially like to thank Miranda
Hartley, EB Community Support Manager, for encouraging
me to put myself forward – I don’t think I would have if it
wasn’t for her positivity and encouragement. It’s nice to
know DEBRA is always on the other end of the phone – it’s
my turn to give something back.
If anyone is considering becoming a trustee or serving on
any of DEBRA’s committees, I would strongly recommend it.
Even though it’s early days, I don’t regret a single moment.
If you think that you can offer the help and support that
DEBRA needs, and you have the time, then go for it.
Thank you for accepting me – I look forward to meeting
and hearing from DEBRA members old and new in the
course of the role.
My working days are Monday – Wednesday, 9am –
3.30pm. I also have an answering machine on my
telephone for any queries out of these hours. I can
help you with questions about appointment dates
and times. If you have condition related queries,
Sharon and Debbie should always be the first point
of contact. However, if they are unavailable, I am
here to take your query and help resolve it for you.
Tracy Scott, Glasgow Royal Infirmary
Mihai Sucan, a knowledgeable web developer and a
proud Romanian citizen, travelled widely and when he
came to St. Thomas’ Hospital in London, a centre of
excellence for EB, he recorded the visit:
‘My experience in London taught me to appreciate the
importance of medical research and donating to support
it. St Thomas’ Hospital in London relies on funds from
various charities for a lot of their EB research. They even
had a dermatologist from Sydney working with their
team for the purpose of learning more about EB, for one
year, paid for from the budget of a charity [DEBRA], from
donations. That’s epic for me. I’m glad to have met Dr
Susan Robertson and to be her patient. She went back
to Sydney and I am hoping her additional experience will
be of benefit to more EB patients.’
Read more from his inspiring blog here:
http://mihai.sucan.ro/mihai/blog/touched.
Mihai passed away in April this year, following a battle
with cancer. His blog deals with his experience of living
with EB and may be distressing to some readers.
Rhian Edwards
...see page 18
DEBRA In Touch Autumn/Winter 2015
7
EB Community Support
How Community Support and Healthcare
has made a huge difference to us
When their son was diagnosed with
EB, DEBRA’s Community Support team
and the specialist Healthcare team at
Birmingham Children’s Hospital helped
new parents Hayee and Sidra get the
support they needed.
Knowing Rafay is getting
the best support gives us
peace of mind
My wife and I had never heard of EB before our son Rafay was
born. Now it’s at the centre of our lives.
Luckily, Rafay was born in Manchester General Hospital,
diagnosed with Recessive Dystrophic EB and referred to
the specialist EB Healthcare team at Birmingham Children’s
Hospital shortly after birth. But understanding what EB would
mean for us wasn’t easy. At the time, we’d only been living
in the UK for about six months and English is not our first
language – we come from Pakistan originally, where Urdu and
Punjabi are spoken at home. It was completely overwhelming,
trying to understand complex medical terms and learn how
to look after Rafay, change his dressings and protect his skin.
Thankfully, our DEBRA EB community support manager and
our specialist EB nurse were able to help us.
Zainib Hussain, our DEBRA EB community support manager
and Victoria Warren, our specialist EB nurse, work closely
together to help us convey any concerns we have. Zainib has
even attended home visits with Victoria where she has been
able to translate for us if needed. People often have to face so
many difficulties in life. Thanks to Zainib, one of those difficulties
– the language barrier – has been lifted.
Victoria has been wonderful too, going beyond the call of duty
to make sure Rafay gets the care he needs. We had some
difficultly obtaining the right dressings for Rafay on prescription.
Victoria spent a lot of time on the phone explaining EB to our
GP and even visited the surgery in person to make sure they
really understood Rafay’s needs and could provide appropriate
dressings and medications.
We’re glad to have her dedication – Rafay’s our beautiful baby,
our first born son, but it’s frightening having a child with a very
rare condition like EB. Since he was born, he has had to stay in
hospital several times, has had infections all over his body, and
at times he has had blisters in his mouth and been unable to
feed. We will always worry, but knowing he is getting the best
possible care and support gives us peace of mind.
8
DEBRA In Touch Autumn/Winter
2015
Spring 2014
Smiling: Rafay with his dad Hayee.
While the Healthcare team has been on hand to
help us deal with Rafay’s medical needs, the DEBRA
EB Community Support team has enabled us to
understand and navigate the complex and confusing
world of health and social care systems. Zainib has
helped us with our applications for Tax Credits and
Disability Living Allowance (DLA) for Rafay, as well
as signposting us to other organisations for support
with other things, like immigration issues. We’ve also
received a support grant from DEBRA to purchase
essential items for Rafay.
Now my priority is
my child…
I don’t think about myself
Now, when we need support, we always contact
Zainib who is just a phone call away. We’ve received
a lot of support from DEBRA in many ways – I
honestly don’t know how we’d manage without them.
Hayee Abdul
DEBRA funds 10% of the salary of each EB Clinical
Nurse Specialist in the team at Birmingham Children’s
Hospital, enabling them to offer an enhanced
healthcare service to people living with EB. Find out
more at www.debra.org.uk/nhspartnership.
...see page 18
Membership
Have fun at the DEBRA holiday home at Brynteg this winter.
Book your holiday now
There’s plenty of availability in the DEBRA holiday homes in Weymouth and Poole during October. The DEBRA holiday
home in Brynteg is open during November, December and January too. Find out more about the holiday homes and
check availability using the up-to-date availability calendars at www.debra.org.uk/holidayhomes.
To book now call the Membership team on 01344 771961 or email [email protected].
Help with your energy and water bills
Warm Home Discount – If you are in receipt of some means-tested benefits
and your supplier is part of the scheme you may be eligible for an annual
payment of up to £140 towards your energy bills paid directly to your electricity
supplier or credited to your pre-paid meter.
Find out more at www.gov.uk/the-warm-home-discount-scheme.
Holiday Home
priority booking
for 2016
opening soon
Winter Fuel Payment – You could get between £100 and £300 tax-free to help
pay your heating bills if you were born on or before 5 January 1953. You usually
get a Winter Fuel Payment automatically if you get the State Pension. In some
cases you may have to apply for it.
Visit www.gov.uk/winter-fuel-payment to find out more.
From 1 October 2015
members who did not stay
at a DEBRA holiday home
in 2015 but wish to holiday
in 2016 can book.
Cold Weather Payment – If the temperature is at or forecast to be at or below
0 degrees for seven consecutive days, you may be eligible for a payment of £25 if
you are in receipt of some means-tested benefits.
Visit www.gov.uk/cold-weather-payment to find out more.
From 1 November 2015
members wishing to stay
during the school holidays
in 2016 who did not stay
in a DEBRA holiday home
during school holidays in
2015 can book.
WaterSure – Every company offers the WaterSure tariff. This caps the bills for
certain metered household customers at the average household bill for their area.
It applies to metered customers who receive certain means-tested benefits and:
•have three or more dependent children living with them, or
•have (or have someone living with them who has) a medical condition that
involves using large volumes of water.
If you think you may be eligible, contact your water supplier or visit
www.ofwat.gov.uk/consumerissues/assistance/watersure to find out more.
From 1 December 2015
all DEBRA members who
would like to book a stay in
a DEBRA holiday home in
2016 can book.
Your community support manager can assist you with applying to these schemes.
...see page 18
DEBRA In Touch Autumn/Winter 2015
9
Section name
Member’s
storyin here
Climbing
Snowden
DEBRA member Sophie Eastburn (15), who has mild Dystrophic EB,
tells us how she took on Mount Snowden:
I get a lot of blisters, usually inside my mouth, on my
ankles or on my toes. I have to use needles to burst the
blisters on my skin. The most difficult thing about my EB is
how it affects my feet and my toenails – they can be very
painful because of the blistering. I must wear shoes that
aren’t too tight and I’ve even had an operation on my feet
to try and stop them becoming so blistered. But my EB
doesn’t limit what I can do, it’s just something I have to
think about.
My EB doesn’t limit
what I can do
I decided to climb Mount Snowden because a family
member had climbed the mountain many times. Me, my
sister Lauren and my mum, Lisa, all decided to do it as a
family – we’d never done anything that challenging before.
Sophie (left) with her sister Lauren.
It’s true – you can do
anything you want to
Before we left for Wales my mum contacted Finola
Sheehan, EB Clinical Nurse Specialist at Great Ormond
Street Hospital. She was such a great help, giving us
lots of ideas about how to minimise friction, reduce the
rubbing from my climbing boots and prevent blisters from
forming on my feet. Finola suggested trying gel insoles
and Sliversocks in the boots. Mum bought these products
through DEBRA and I thought they worked really well –
I didn’t seem to get any blisters from the climb, I was just
a bit tired and sore!
Just one of the breath-taking views on the climb.
10
10
DEBRA In Touch Autumn/Winter 2015
...see page 18
Section
Member’s
name instory
here
On the way up: Sophie (right) with her mum (left) and sister Lauren (centre).
When we stood at the
top to take
a photo, it was a very
happy moment
The thing I enjoyed most about the climb was reaching the
top of the mountain itself. I never thought in a million years
that I’d ever do something like that so reaching the top
while being with the people I love most in the world was
such a great achievement for all of us. Everyone was so
proud of themselves, especially my mum and my sister,
as they struggled slightly on the higher parts of the climb.
The pathway was very narrow and steep, so we had to be
very careful about where we were stepping, but Lauren
and mum were great at encouraging one another! When
we stood at the top to take a photo, it was a very
happy moment.
Beating the climb, step by step.
It was such a great
achievement
for all of us
We proved that just because you have been diagnosed
with EB, it doesn’t mean you can’t do the things any other
person would do – you just have to be a little more careful
than other people would usually be. It does get a bit boring
people telling you that, but I’ve realised it’s true – you
can do anything you want to.
Sophie Eastburn
A steep climb.
...see page 18
DEBRA In Touch Autumn/Winter 2015
11
11
Direct payments
Care and support choices: direct payments
More and more people living with EB are being offered direct payments as an alternative to their current council-managed
care arrangements. Choosing the right care can be tricky, so we’ve put together this article to help answer some of your
questions about direct payments. Your DEBRA EB Community Support Manager will be happy to provide you with further
information and support you in arranging care. Contact us using the numbers on the back of this magazine. Alternatively, if
you are unsure who your Community Support Manager is, please call 01344 771961 or email [email protected].
Your care and support options
If you have been assessed by your local council as needing care and support, you can decide to use services provided
by your council or you can opt to receive direct payments and arrange the care yourself. With either option, you may also
have to make a financial contribution towards the cost of your care.
What are direct payments?
An alternative to using services provided and arranged by your local authority, direct payments are paid directly to you
so you can decide how you want to meet your care and support needs. Some people use direct payments to employ a
personal assistant (PA) to help with daily living tasks like washing, dressing and preparing food, although there are many
other ways direct payments can be used.
Many people find direct
payments useful because:
•you take control of your care
•you may be able to plan a care
package you feel best suits your needs
•you have more flexibility and choice
about who provides your care
and when
Things to consider if you
are thinking about using
direct payments:
•If you use your direct payments to
employ a person (such as a PA),
you are an employer in the eyes of
the law and must meet your legal
obligations, including:
•providing your employee with a
pension
•ensuring their tax and national
insurance is paid
•providing holiday entitlement
•making sure you have adequate
public liability insurance
•If you use your direct payments to
pay an agency to provide care, these
requirements should be covered by
the agency, but it’s always a good
idea to check they are being met.
•Direct Payments will be paid into
a separate bank account which
you will need to set up.
•You will need to keep documentary
evidence showing how the
payments are being used to meet
the care needs detailed in your care
plan or assessment. This includes:
•submitting receipts and invoices
to your council
•completing records and
paperwork involved with
becoming an employer
•You can get help from another person
to manage the direct payments –
however, unless the person has been
granted Power of Attorney for you, or
you are under 18, you remain legally
responsible for your direct payments.
•You can decide whether to use
direct payments or care provided
directly by the council – you do
not have to have direct payments
if you do not want them.
•If you decide to have direct
payments, you can change your
mind at any time – contact your
local social services and ask them
to arrange services instead.
•Don’t be afraid to ask questions –
it’s important to choose what’s right
for you.
Miranda Hartley –
DEBRA EB Community
Support Manager
Thank you to all members of the
DEBRA EB Community Support
team and the EB team at Solihull
Hospital for their contributions to
this article.
Useful links
www.gov.uk/find-your-local-council
www.nhs.uk/Conditions/social-care-and-support-guide/Pages/direct-payments-personal-budgets.aspx
www.disabilityrightsuk.org/community-care-direct-payments
www.carersuk.org/help-and-advice/practical-support/getting-care-and-support/direct-payments
12
DEBRA In Touch Autumn/Winter 2015
...see page 18
Bereavement support
Bereavement support from the DEBRA
EB Community Support team
We understand that losing a loved
one is difficult so we are here to
help if you need practical or
emotional support.
Some people find writing a eulogy or poem is helpful
during the healing process so, after consultation with the
EB healthcare teams, we have created remembrance
areas on our website offering families who have lost a
loved one to EB the chance to celebrate their loved ones
life. We have added two remembrance pages for you –
one is for children and young people up to 16 years and
the second one is for adults. To visit the pages, upload
a eulogy or poem and find other useful resources please
go to www.debra.org.uk/bereavementsupport. If
you would like some help writing a eulogy the Community
Support team is here to support you.
We can also help in other ways. This could be by referring
family members for bereavement counselling or talking
through emotional issues. Losing a loved one can also
involve financial pressures and we would be happy to talk
you through your options.
Contact your DEBRA EB Community Support Manager
for one-to-one help and advice. Alternatively, if you are
unsure who your local DEBRA EB Community Support
Manager is, please contact us on 01344 771961 or email
[email protected]. We will be glad to support
you in any way we can.
Other useful resources
Hospice UK (www.hospiceuk.org) provides a
useful list of adult hospices throughout the UK.
Together for Short Lives
(www.togetherforshortlives.org.uk) offers
support an advice for families with seriously ill
children in the UK.
Palliative Care Scotland
(www.palliativecarescotland.org.uk) provides full
list of palliative care services in Scotland.
Children’s Hospice Association Scotland
(www.chas.org.uk) provides hospice services in
Scotland for children and young people who have
life-shortening conditions.
Helping families cope with loss
Child Bereavement UK (www.childbereavementuk.org)
supports families and educates professionals when
a baby or child of any age dies or is dying, or when a
child is facing bereavement.
Winston’s Wish (www.winstonswish.org.uk) offers
practical support and guidance to bereaved children,
their families and professionals.
Grief Encounter (www.griefencounter.org.uk) offers
a flexible and accessible bereavement service which
aims to care and respond to the needs of every family.
Cruse Bereavement Care (www.cruse.org.uk) offers
local support after the death of someone close.
Cruse Bereavement Care Scotland
(www.crusescotland.org.uk) offers bereavement
support and information in Scotland.
Macmillan Cancer Support (www.macmillan.org.uk)
delivers practical and low level emotional support
to people who are recently bereaved in the local
community.
Counselling Directory
(www.counselling-directory.org.uk) is a
bereavement counselling directory.
...see page 18
DEBRA In Touch Autumn/Winter 2015
13
Occupational therapy
Occupational Therapy needs you
The Occupational Therapy team at Birmingham
Children’s Hospital is currently working on a project to
provide resources to children and families living with EB,
community occupational therapists, teachers and other
people who may find them useful.
How Occupational Therapy can help:
Callum’s story
These resources will include advice on equipment
and strategies for carrying out daily living activities.
The EB team would welcome your input on the kind
of resources and information to include. Please email
[email protected] or tweet
@bch_ot with your ideas and questions.
Callum was dissatisfied: due to contractures in hands,
he was unable to hold cutlery, found it difficult to use the
toilet, maintain personal hygiene and fasten zips. Callum
also felt excluded because he was left out of some
physical activities at school. He spent most of his time
at home and rarely went anywhere with his friends – the
contractures in his hands meant that he was finding his
wheelchair more difficult to use. Frustrated, Callum was
struggling with mood swings.
What is occupational therapy?
Occupational therapy aims to develop skills, increase
independence, enable participation in daily living activities
and promote health and wellbeing.
An occupational therapist (OT) can work with you to
identify the strengths and difficulties you may have in
everyday life, such as getting dressed, having a bath,
playing, working, cooking or doing schoolwork. An OT
can provide equipment, adaptations or therapy to enable
you to achieve your goals. This may by adapting the
environment or activity so that you can take part more
fully or safely. Part of an OT’s role in EB is to provide
hand splints and techniques to maintain hand function for
as long as possible: our hands are often the gateway to
independence and quality of life.
In all our work, we focus on your goals and look at 1) work
or school, 2) self-care and 3) leisure and hobbies.
Callum, a teenager living with EB, met the specialist EB
Occupational Therapist at the multidisciplinary clinic.
The OT helped Callum by:
•providing some adapted cutlery
•modifying his hand splint to prevent further contractions
•referring him and his parents to his local OT to explore
the possibility of installing a ‘wash and dry’ toilet
•showing Callum and his parents ways to adapt zips to
make them easier to use
•speaking to Callum’s school about ways of including him
in all activities
•referring Callum to his local wheelchair services for an
assessment for a powered wheelchair. The OT’s advice
meant that wheelchair service made sure the effects of
EB were considered during the assessment.
Now Callum feels happier and more confident. Getting
help from his OT has enabled him to be more independent
and increased his quality of life – he can now hold cutlery,
maintain personal hygiene independently and take part in
more activities, in and out of school.
If you think occupational therapy could be of benefit to
you or your child please ask to speak to the OT at your
specialist EB centre (using the EB centre numbers on
the back of this magazine) or contact your local
community OT.
Genevieve Butler – Senior Occupational Therapist,
Birmingham Children’s Hospital
Supported by DEBRA funding, Genevieve is currently
assisting with the development of Best Practice
Guidelines in Occupational Therapy.
Part of the BCH Occupational Therapy team (left to right): Helen, Ryan,
Genevieve, Kiri and Deanna.
14
DEBRA In Touch Autumn/Winter 2015
...see page 18
Designed for living
Spycra
Protect
Spycra Protect is a soft silicone adhesive
dressing which has two unique features:
1. A bi-elastic top layer which means
that it can stretch in both directions
2. A super-soft silicone self-adhesive
layer
The soft silicone is gentle on the skin which
is very important for people with EB. It can
be removed or repositioned easily without
pain. The stretchiness of the dressing makes it ideal for areas that are
difficult to protect.
Spycra Protect can help to reduce friction and blistering. It can be applied
over intact skin, blisters or minor open areas. Spycra Protect is versatile
and can be cut to size and used in a variety of ways.
Feedback from many people with EB who have tried Spycra Protect has
been positive and has proved helpful in protecting their skin, particularly
patients with EB Simplex.
‘Since using Spycra it has transformed my life. No longer do I remove
socks to find they are sticking to cuts on the back of my legs. I have not
had one blister on my ankle even though I have a Springer Spaniel who’s
always causing me to bash my ankles together.’ Darren, who
has Dystrophic EB.
Please contact your EB nurse for more information.
Annette Downe – EB Clinical Nurse Specialist,
Guy’s and St. Thomas’ Hospital
Recipe: Avocado Chocolate Mousse
People with severe EB can have a higher than average requirement for calories, protein, vitamins and minerals
because of the demands of wound healing. Sometimes it is difficult to achieve this high intake every day. As EB
dietitians we are always keen to promote any food or drink which can provide a boost of these essentials and easily
be included in a day’s diet, particularly if they are tasty and easy to eat! This recipe uses delicious ingredients to
provide a high calorie, high protein, nutrient-rich pudding or snack.
Serves 3 – 4
Ingredients
Method
•Scoop the ripe flesh out of the avocados.
3 ripe medium avocados
•Mash well or blend until smooth.
2 - 3 tablespoons fruit puree or
honey (add more or less to taste)*
•Add cocoa powder, honey, vanilla and mix well or blend.
½ cup plain cocoa powder
•Allow to cool in the fridge for minimum 1 hour.
1 tsp vanilla extract (optional)
*Note: do not use honey in food for children under one year of age.
•Taste – add more honey or puree if desired for sweetness.
Natalie Yerlett – Specialist EB Dietitian, Great Ormond Street Hospital
...see page 18
DEBRA In Touch Autumn/Winter 2015
15
Research
EB research at Q and A with
the University Dr Robyn Hickerson
of Dundee
How did you become
interested in EB
research?
•Screening small molecules to identify
compounds which may increase or
upregulate ‘substitute’ or ‘protective’ keratins
such as K16 and K17 to allow filament
formation in EBS. These could be used
to treat both the dominant and the rare
recessive forms of EBS caused by mutations
in keratins K5 or K14.
•A compound known to increase the amount
of keratins K16 and K17 present is currently
being evaluated in the laboratory. As this
compound is already approved for clinical
use for other conditions, translation to the
clinical trial stage and ultimately to the clinic
should be straightforward if the results are
promising.
•A long-standing program designed to deliver
mutation-specific siRNA (small interfering
RNA) to the skin is ongoing. This approach
may be used to treat some dominant forms
of EBS and other keratin related conditions by
targeting the faulty protein without affecting
the normal protein. The team has recently
obtained exciting preliminary data showing
advances in delivering siRNA to skin.
•The team is working in collaboration with
a small industrial partner on developing
specialized antisense oligonucleotides –
specially selected single stranded DNA that
can target the faulty protein over the normal
protein in a way similar to siRNA. However,
these drugs are smaller and more easily
delivered to the target tissue.
•A research programme is also underway to
develop ‘read through’ agents – chemical
compounds which will re-activate certain
types of faulty genes, allowing production of
the proteins that would not normally be made
in RDEB or other recessive forms of EB.
16
DEBRA In Touch Autumn/Winter 2015
I became aware of the
research involved in developing
therapeutics for EB over a
decade ago while working for a
company developing treatments
for a similar genetic condition.
These therapies could easily be
modified for EBS – for this reason,
people with EBS often attended
the patient support meetings in
which we participated. It was
during this time that I became
aware of the research involved in
developing therapeutics not only
for EBS but for all forms of EB.
What do you think are the most promising
therapies currently being developed for people
with RDEB?
I’m thrilled to see progress in a variety of avenues related to
RDEB. I’m particularly excited by the progress made in bone
marrow transplantation. However, I’m concerned about the risks
currently associated with these procedures, and I hope they can
be improved. I also look forward to seeing if protein replacement
therapy in RDEB works as well in people as it appears to work in
preclinical models.
In addition, we have developed a number of chemical
compounds – known as ‘read-through’ agents – which have
shown potential to offer new treatments to many (but not all)
people with RDEB and JEB. They may also work for people with
other genetic conditions. We are putting considerable resources
into this extremely exciting project.
Another very important area into which we are putting effort
is the development of clinical endpoints that can be used to
evaluate therapies in clinical trials. These will help us understand
if the treatments are working and can be approved for use.
What do you enjoy doing when you are not busy
with research?
Friends and family are the centre of my life – it is not what I’m
doing, but who I’m doing it with that’s important! I enjoy travelling
to unusual destinations and trying to replicate the cuisine I
encounter when I return home. I thoroughly enjoy live music (I am
a perpetual beginner guitarist), snowboarding, mountain biking
and most of all, surfing…with my friends, of course!
Dr Robyn Hickerson
...see page 18
Image credit: University of Dundee.
The team at the University of Dundee is leading
several programs to develop therapies for all
forms of EB. These include:
Research
What is EB Acquisita?
Unlike most forms of EB, EB Acquisita (EBA) is an autoimmune disease rather than an inherited genetic
condition. In EBA the person’s own immune system produces antibodies which stop the protein
collagen in the skin functioning properly, whereas other forms of EB are caused by genetic changes
which cause the collagen in the skin to be absent or ineffective.
Collagen is important for anchoring the outer dermal layer
of the skin to the deeper underlying tissue. When it cannot
fulfil this role the skin is fragile and prone to blistering. This
is why the symptoms of EBA can look very similar to other
types of EB, particularly Dystrophic EB, even though the
causes of the two conditions are very different.
As with Dystrophic EB even gentle trauma can cause the
skin to blister. Blisters tend to occur in areas of the body
that are easily injured, sometimes the mucous membranes
are affected.
There are two subtypes of EBA that are less common:
generalised inflammatory EBA where blisters are not
localised to trauma-prone sites and skin has a general
redness, itching and forms small abnormal patches
(known as plaques) and a form of EBA that predominantly
affects the mucosal membranes in areas such as the
mouth, eyes, gullet, rectum and genitals.
Some people with EBA may have other health problems,
such as Crohn’s Disease (an inflammatory condition of
the bowel), Systemic Lupus Erythematosus (SLE) or
Amyloidosis (a condition where proteins deposit in the
organs and affect function).
EBA is a very rare condition. Unlike other types of EB,
such as Junctional and Dystrophic, which are present from
birth, EBA usually occurs later in life.
EBA tends to affect adults more often than children. We do
not know the incidence of EBA, only that it is a very rare
condition – the medical literature contained just 39 cases
of EBA in children (up to 2013).
Causes
EBA occurs when the immune system starts to
produce anti-bodies to the collagen in the skin.
However, what causes this antibody production
has not yet been identified.
Managing the condition
Typically, EBA may have periods of remission and
exacerbation. Although there is no real cure for the
condition, it can be managed. Management aims
to protect skin and stop blister formation, to promote
healing and prevent complications such as infections
of open wounds and sores. As EBA is an autoimmune
disease it is sometimes treated with drugs that suppress
the immune system but there is little evidence to show
which drugs are most effective.
Classifying EBA
Most types of EB are classified according to the
genes that cause the condition. Although EBA is a
skin blistering condition, it is not caused by genetic
changes and as such it is not always classified as EB.
For more information on the classification of EB types
please see page 15 in the Spring 2015 edition of
In Touch (downloadable from
www.debra.org.uk\publications).
Useful resources
www.dermnetnz.org/immune/epidermolysis-bullosa-acquisita.html
http://emedicine.medscape.com/article/1063083-overview
Sorry you’re leaving
Lesley Foster – EB Clinical Nurse Specialist
excellent team, and this year I was nominated for a staff
recognition award by one of our families – a great honour
though I did not win. Thank you to whoever nominated me!
I’ve been with the EB team at Great Ormond Street Hospital
since 2002 but have decided it’s time to move on to a new
post at St Thomas’ Hospital in London.
It has been the greatest privilege to be involved with
both families and professionals associated with EB and
DEBRA. I will miss everyone. Thank you to all the lovely families
for letting me into your lives – I am taking away many memories
and friends, and wish you all well for the future.
Being an EB nurse is a unique job – often exhausting,
sometimes sad, but with joyful moments too. I have been
fortunate to work with a fabulously supportive and clinically
Lesley Foster
...see page 18
DEBRA In Touch Autumn/Winter 2015
17
Help us raise awareness of EB this October!
From our Facebook
and Twitter pages…
‘Rare Disease UK has started
a blog and they are looking for
people with rare conditions to write
for it…If you’re interested or have
any questions, please click on the
link below: www.raredisease.org.
uk/blog-for-rare-disease-uk.htm’
‘Keep your eyes peeled for
@CharityDEBRA’s first TV advert,
which will be running throughout
August….Watch it now at
www.debra.org.uk/3HH’
Each year, 25-31 October marks EB Awareness
Week…this year we want to make it bigger and
better so we’re turning the whole of October into
EB Awareness Month!
The call to action is simple: even clothing labels and seams can damage
the fragile skin of someone living with EB, this October raise awareness and
#ShowYourSeams!
We’re asking our supporters to get involved by turning their clothes inside
out and we’d love for you, our members, to join in too:
1.Post a photo on Facebook or Twitter showing your EB-friendly customised
clothes, whether that’s a label cut out or a neckline removed like Mason
(pictured) along with the hashtag #ShowYourSeams – don’t forget to tag
DEBRA UK so we can like, comment and retweet!
2.Or, why not hold a #ShowYourSeams dress down day and ask colleagues
or classmates to donate £1? To download a fundraising pack simply visit
www.debra.org.uk/showyourseams.
‘DEBRA UK: ‘Kind-hearted
10-year-old Ava Gardner has been
spending her free time collecting
stock donations for the DEBRA
charity shops. Ava has collected
an amazing 50 bags of donations
which will help us raise even more
funds to help those living with EB.
Well done Ava and a massive thank
you from everyone at DEBRA!’
‘Nancy ‫@‏‬patonproduction:
Funday #filming #documentary
Maisy & the making of
@DaisyTheFilm @KeetchMaisy
@GreatOrmondSt
@CharityDEBRA #stopeb #eb’
To get
get the full story
To
storybehind
behindthese
these
tweets and posts,
tweets
posts, visit
visitus
usatat www.
www.twitter.com/CharityDEBRA
twitter.com/CharityDEBRA
and www.facebook.com/
www.facebook.com/
and
DEBRACharity and
and join
join our
our
DEBRACharity
online community.
community.
online
Be proud to #ShowYourSeams for DEBRA.
18
DEBRA In Touch Autumn/Winter 2015
Section name inRetail
here
Crowds queue up at
DEBRA shop openings
Meet volunteer Ilma Coles...
It has been a busy few months for the
DEBRA retail division as we saw many
new shops open their doors.
One of our oldest volunteers, Ilma Coles, regularly volunteers at
the DEBRA shop in Barnsley where she enjoys chatting to the
staff and customers.
Customers gathered outside at the opening
of the new DEBRA charity shop at 31 Teviot
Walk, Cumbernauld (G67 1NG). Area Manager,
Agnes Vallelly and her team were joined at the
opening by Cumbernauld Shopping Centre
Manager, Robert Barr and bagpipe player
Steven, who piped the customers through the
door to the delight of shoppers.
Area Manager Susan
Davison said: ‘Ilma is
an asset to the team –
we are delighted lma
enjoys volunteering with
us. Here at DEBRA we
are sincerely grateful
for the hard work and
dedication shown by our
staff and volunteers.’
The tills were ringing at the DEBRA shop in
Portslade. Councillor Denise Cobb was on hand
to officially cut the ribbon at 77 Boundary Road,
and happily met with staff and volunteers.
Customers queued up to be the first
through the doors of the new and inviting
DEBRA shop situated at 23 High Street,
Bognor (PO21 1RS). The team enjoyed a
successful first day and were delighted to
welcome the Mayor of Bognor, Councillor
Jeanette Warr, to the shop.
Ilma recently celebrated
her 90th birthday
and is photographed
celebrating her special
day in the shop. Staff
presented her with a
birthday cake
and flowers.
Happy Birthday Ilma and thank you for all your
hard work and support!
Deputy Mayor, Councillor Tom Rounds officially opened the new DEBRA shop at Unit 12 Phelps Parade, Calne
(SN11 0HA) and spent time chatting to DEBRA staff and volunteers.
All shops specialise in selling good quality furniture and clothing. In addition to this they have a good selection of
bric-a-brac, accessories, household items, books, toys and media items.
The DEBRA charity shops raise vital awareness of EB and DEBRA on the high street and crucially provide the steady
income stream necessary to enable DEBRA to continue providing care and support and funding research.
Watch this space for news of further shop openings! We have an exciting new Furniture and Electrical store due to
open soon in Southampton.
To view the full range of photographs from our shop openings, please visit www.facebook.com/DEBRAretail.
Staff and customers were all smiles at the DEBRA shop opening in Cumbernauld.
Don’t forget you can shop online and find your nearest high street shop at www.debra.org.uk/shop/intro.
...see page 18
DEBRA In Touch Autumn/Winter 2015
19
19
Useful Numbers
DEBRA Office
Director of Healthcare, Membership and EB Community Support – Claire Mather
Membership enquiries
Membership Manager – Hazel Ewens
Membership Assistant (inc. holiday home bookings) – Sharon Hyde
Charitable Activities Communications Officer (inc. In Touch) – Miranda Lloyd
EB Community Support team
North of England, Wales, Scotland and NI Regional Manager – Sondra Butterworth
Scotland and the Far North Area Manager – Beth Davenport
South of England Regional Manager – Helen Weaver
South of England Area Manager – Miranda Hartley
South of England Area Manager – Sallie-Ann Nicol
Central England and Wales Area Manager – Zainib Hussain
Volunteering for DEBRA
Fundraising for DEBRA
01344 771961
07920 231271
07917 230105
07880 193118
07717 774553
07747 474454
07920 231270
01698 424210
01344 771961
Healthcare
Children’s Nursing Service – Great Ormond Street Hospital
0207 829 7808
(out of hours service for patients registered at GOSH only: 0207 405 9200, ask for EB nurse on call)
Lead EB Clinical Nurse Specialist – Jackie Denyer
EB Clinical Nurse Specialists – Finola Sheehan, Angela Whelan
Service Co-ordinator – Sonia Ama
Children’s Nursing Service – Birmingham Children’s Hospital
0121 333 8224
(out of hours emergencies only: ask for the dermatologist on call stating that this is an EB child)
EB Clinical Nurse Specialists – Lisa Burns, Dawn James, Emma Raybould, Victoria Warren
Adult Nursing Service – St. Thomas’ Hospital
0207 188 6399
Lead EB Clinical Nurse Specialist – Jane Clapham (North)
07775 648472
EB Clinical Nurse Specialist – Pauline Graham-King (North)
07786 850683
EB Clinical Nurse Specialist – Chris Bloor (South)
07554 223358
EB Clinical Nurse Specialist – Annette Downe (South)
07786 850684
EB Clinical Nurse Specialist – Caroline MacKenzie (South)
07833 401838
Adult Nursing Service – Solihull Hospital
0121 4245232
EB Clinical Nurse Specialist – Tracy Adni
07846 986987
EB Clinical Nurse Specialist – Kal Begum
07966 801710
EB Clinical Nurse Specialist – Bryony Jay
07816341465
EB Clinical Nurse Specialist – Carol Knowles
07527 679679
Scottish Healthcare Team
0141 2118773
EB Clinical Nurse Specialist (adults) – Debbie Johnston
07772 628831
EB Clinical Nurse Specialist (paediatrics) – Sharon Fisher
0141 2019220
Administrative Assistant – Tracy Scott (Mon – Wed, 9am – 3.30pm)
0141 2118773
In an emergency call 112. Out of hours for urgent medical help contact NHS 111 or your GP.
If they require further information about your condition they should be advised to speak to the
on call dermatology registrar at your specialist centre for EB.
DEBRA, DEBRA House, 13 Wellington Business Park, Dukes Ride, Crowthorne, Berkshire, RG45 6LS.
email: [email protected] web: www.debra.org.uk
Follow us on
Facebook via www.facebook.com/DEBRAcharity
Twitter @charityDEBRA Visit us on
Registered charity no. 1084958 (England & Wales) SC039654 (Scotland).