Summer 2015 The magazine for everyone living with EB The excitement of Members’ Weekend See page 6 Plus • A day in the life of an EB Clinical Nurse Specialist • Research: Q and A with Prof. Hovnanian and more… Book your holiday now Prescriptions ordered on the go – see page 10 – see page 12 www.debra.org.uk This edition sponsored by Clinidirect. Welcome Welcome to the summer edition of In Touch I’d like to begin by thanking everyone DEBRA is committed to offering who came to DEBRA’s Members’ the best possible care and support Weekend and AGM this year – over to people living and working with 300 people attended, including over EB. Please continue to share your 100 people with EB, and their families, views and stories with us. We will making it the largest event for DEBRA soon be launching a new fundraising members to date. e-newsletter which you may receive if you’ve opted in to fundraising mail – Special thanks go to the EB clinicians, you will be able to unsubscribe should nurses and healthcare professionals you no longer wish to receive it. who gave up their time to attend, hold exhibition stands and lead or If you have any ideas for activities participate in Q and A sessions. For for future Members’ Days or a flavour of the excitement of the potential venues please email weekend please turn to pages 6 – 9. [email protected] call the Membership Team on 01344 DEBRA UK is also proud to be 771961or contact me directly. hosting EB-CLINET and the DEBRA International conferences for clinicians In this issue and professionals in London this Best wishes, year (24 – 26 September), providing Members’ Weekend 6 unparalleled opportunities for leading clinicians and DEBRA organisations Getting together Claire Mather from around the world to share in Birmingham 3 knowledge. Keep an eye on our Director of Healthcare, Membership Designed for living 12 and EB Community Support website for the conference report. Research 16 EB bereavement support 17 EB Simplex Meeting (Scotland and the North) 2015: watch this space! 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 – In Touch date to be confirmed. 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. is looking 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). for you If you are a DEBRA member living or working with EB and Connect with other people have a story to tell, a piece of living with EB news to share or an idea for an article you would like Visit the EB community on www.rareconnect.org to connect with each to see in In Touch, please other, share experiences and find helpful information and resources. email Miranda Lloyd at [email protected], Visit us on Facebook at www.facebook.com/DEBRACharity call 01344 771961 or write in for the latest news from DEBRA. using the details on the back of this magazine. Thank you! and follow us on Twitter @charityDEBRA. Main cover image credit: James Bastable Photography 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 Summer 2015 Your news Getting together in Birmingham DEBRA member Gena Lenihan gives us her thoughts on the Get Together for people living with EB in Birmingham: Two of my children – Bryn (16) and Dylan (11) – have EB Simplex. What worries me most is how my boys will manage when they start to gain their independence. Bryn will be making the transition to adult services soon ‘If you let EB become bigger and as parents, we’re trying to equip him to manage his EB on his own than it is you are not going to and look after himself. Attending the get together in Birmingham was a be able to live a normal life.’ great opportunity to meet other young people living with EB, and to know Myra Ali, who has Dystrophic that they are managing the condition and getting on with their lives. EB, shared her thoughts on living with EB. Catching up with other people living with EB does provide reassurance ‘A lot of people with EB, especially parents, came with a lot of questions The day was also a rare chance to meet many of the new members of staff about the condition and what the in the EB teams at both Birmingham Children’s Hospital and Solihull Hospital, future holds. It was wonderful to work which was great. Although there’s no cure and we manage the condition together to answer some of those well at home, our relationship with the EB nursing team is really important. questions. Having the chance to talk It’s always good to keep up to date with the latest dressings, and to know to so many other people of different you can pick up the phone and get friendly, helpful advice when you need it. ages and backgrounds living with EB also made a huge difference.’ Bryn particularly enjoyed talking to Carol Knowles, EB Clinical Nurse Zainib Hussain, DEBRA EB Specialist at Solihull, who took the time to speak to him as an adult. She Community Support Manager gave him some tips on how to care for his feet – he felt quite good about it after speaking to her. ‘The Get Together was a great DEBRA has made a 100 percent difference to our lives. If ever I need some opportunity to meet younger patients information or an answer to a question I go to DEBRA. Going to events like and answer their questions about the services available for adults with EB. the Get Together and catching up with other people living with EB does We hope that, by working with provide reassurance. DEBRA and the team at Birmingham Gena Lenihan Children’s Hospital, we can make the transition from paediatric to adult care as smooth as possible for people living with EB.’ Carol Knowles, EB Clinical Nurse Specialist, Solihull Hospital ‘Never count yourself out.’ Amy Price, who has Dystrophic EB and is a DEBRA Trustee, spoke eloquently on the day. ‘As an EB nurse, I think it is important to see people living with EB and their families outside the clinical setting. It’s also very important for children living with EB to meet other people living with EB and share experiences. The get together in Birmingham was the perfect occasion to work together and achieve this.’ Lisa Burns, EB Clinical Nurse Specialist, Birmingham Children’s Hospital Gena (left), Gareth (right) and Qassim (centre) met on the day. DEBRA In Touch Summer 2015 3 A day in the life of ... An EB Clinical Nurse Specialist The alarm goes off Dr Mellerio starts 5.30am We all have a love- 3pm and it’s time for a hate relationship with our to see the patients. quick breakfast. I take Each consultation mobiles my dog out – he doesn’t really want to can take up to 40 minutes. On an leave the house but he has no choice. average day five patients attend Off to theatre with the 8.40am these clinics, sometimes more, HoverMatt – an I catch the bus into often with very complex needs. 6.20am inflatable patient The last patient leaves around 6pm. London. It’s doubly transfer aid – and a box of dressings important I’m in by suitable for people with EB. The 8.30 today as a patient is having an HoverMatt is all important. It reduces It always makes oesophageal dilatation, a procedure friction on the skin and means we can me smile when that many patients with Dystrophic EB transfer the patient safely with minimum I hear Big Ben have to help improve their swallowing. discomfort – one of the great pieces of strike I use the time to check my emails. We equipment purchased for us by DEBRA. all have a love-hate relationship with our mobiles. Since I turned it off yesterday We are all done. The patient is on their 6.30pm evening there have only been 20 10.30am It’s been a very long way to the recovery messages! I prioritize them – there’s day but it’s always ward but the day is everything from an urgent query from a worth it because it helps make a just beginning. Most of the EB nursing patient to a notification about a meeting difference to people living with EB. team are in today except Caroline I need to attend in a month’s time. Mackenzie, EB Clinical Nurse Specialist, who is visiting a patient at home. Chris Bloor – EB Clinical Nurse It’s always worth Specialist, Guy’s and St. Thomas’ Hospital it because it helps Now I’m off to the Dermatology Day make a difference Centre for Dr Mellerio’s monthly Chris is part of a team of five EB Clinical multi-disciplinary clinic. My fellow EB to people living with Nurse Specialists employed by the NHS EB Clinical Nurse Specialist Pauline is at Guy’s and St.