XP Support Group - UV protection not isolation.
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XP Support Group June 2012 Newsletter 

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Welcome to our new XP Newsletter

We hope you enjoy reading our newsletter in its new format. Please let me have your comments and suggestions for improvement. I am very new to this and its taken me some time to put this together. I would like to take this opportunity to pay tribute to a very special young man who turned 18 in May. This young man is the reason this group was set up. In March 1998 Alex Webb, then 4 was diagnosed with XP. Steve and I felt lost as thoughts of loosing our little boy to skin cancer seemed to be all we could think about. We were told Alex wouldn’t be able to go to school and would have to be home schooled to ensure that he was not exposed to UV. We took about 1 day of moping then we said to ourselves, we don’t have to accept this let’s see how we can work a way around this to ensure that Alex has a near normal life as possible. Finding out about UV protection made us realise that we needed to find out what other families had done and also pass on the information we had acquired. This is how with the help of Dr Sheru George, the XP Support Group was founded. But back to Alex. Alex has attended pre-school, primary, junior and secondary school and is now at College taking a BTEC. in Hospitality & Catering. As part of Alex’s course he had to put on an event at the College restaurant, organising menus, staff, ordering ingredients and acting as Maitre D’ for the evening. Alex chose for all profits from the event to be donated to the Support Group. He asked if I would give a small  presentation to the 40 guests that attended. It was a real privilege and honour  to have been there that evening. For me it was very emotional seeing my little boy now a young man with a future ahead of him. Alex has raised £260 for the Group. Well done my son!
Sandra Webb,Editor


It’s that time of year again, when we are looking forward to another Owl Patrol,  so get your applications in now!

This years theme is “When I grow up, I want to be!” and for the grown-ups “When I was little I wanted to be!”.

Remember as always it isn’t a first come first served basis, we allocate applications on a 60% returning campers and 40% new campers.
Payment must accompany your application


Fundraising & Donations.

Well done Toby Murrill who completed the London Mararthon in 4 hours and 24 minutes, despite a knee injury. Toby has raised to date over £1200. Toby has to date raised over £1200.Toby’s father has a light sensitive condition.

Thank you to Tasmin & Bethy who ran a roadside stall selling embroidery and crafts that they had made and raised £35 for XP.

Thank you to Procter & Gamble for £1000, their employee and our volunteer Sarah presented the cheque to Sandra Webb.

Thank you to Oxford Study courses for a donation of €1000.

Thank you to an anonymous donor for £3,000 some of which will be used to purchase 10 UV meters to distribute to families.

Thank you to Nick Barber of High Wycombe Lions who chose us as his charity for his year as President. Nick presented Sandra Webb  with a cheque for £1500, some of which will be used to replace the broken air hockey table at Owl Patrol

Thank you to Sally and Harsha from  the XP Clinic who ran the Edinburgh Half Marathon on our behalf and have so far raised over  £400
Thank you also to  Prestwood events for £ 405;  the Scouts of Chiltern North District for £230; Hagley Catholic school for £100; High Wycombe Lions Christmas collection for £150 and Great Missenden Rotary Christmas collection for £121. And a very special Thank you to Fiona Pawson who celebrated her 50th birthday by cycling 50 locks along the Birmingham to Worcester canal and raised £250 for us.

Donations on-line
If you would like to make a donation on line please click here DONATE

Recycle your old jewellery, mobile phones & foreign currency
The Support  Group has teamed up with Recycling for Good Causes. We are collecting Jewellery—gold, silver, costume jewellery and watches. So all those odd earrings and snapped chains are great. Old and foreign notes and coins—this can be any currency UK or foreign and of any age! Mobile phones—Any model and of any age or condition.  Please email mailto:info@xpsupportgroup.org.uk?subject=Recycle  for a Freepost envelope.

Christmas Cards
We had so many beautiful pictures from Owl Patrol this year that we have decided to use 3 to make our own Christmas Cards. These will be available from September in packs of 6 featuring 2 of each design. Each pack costs £2.50 (approx 50p from each pack goes direct to the group). You will be able to order on line or direct from us. The 3 photos are shown below.

Update from the XP Clinic

 The National XP Service at Guy’s and St Thomas’ NHS Trust in London is now in its third year and things are going strong. New referrals steadily continue and the clinics are busier than ever.

The Team
With the appointments of the adult and paediatric clinical nurse specialist in April 2011, permanent consultant dermatologist and clinical lead in September 2011 (that’s me!), and more recently our clinical neuropsychologist, the National XP multidisciplinary team is now complete. In no particular order:
· Dr Hiva Fassihi (XP Clinical Lead and Consultant Dermatologist)
· Dr Robert Sarkany (Consultant Dermatologist)
· Dr David McGibbon (Honorary Consultant Dermatologist)
· Ms Susie Morley (Consultant Ophthalmologist)
· Dr Paola Giunti (Consultant Neurologist)
· Dr Tammy Hedderly (Consultant Paediatric Neurologist)
· Dr Shehla Mohammed (Consultant Clinical Geneticist and Head of Genetics Service)
· Dr Isabel Garrood (Clinical Neuropsychologist)
· Dr Niseth Sheth (Consultant Dermatological Surgeon)
· Sally Turner & Katie Mullard (XP Clinical Nurse Specialists)
· Harsha Naik (XP Imaging)
· Rachael Driver (administrator)
· Professor Alan Lehmann (Honorary scientist, Chairman Genome Damage & Stability Centre, University of Sussex)
· Sandra Webb – Patient Support Group secretary and representative (XPSG)

The Transition Clinic
Clinics were initially split into a monthly ‘adult’ (second Friday of each month) and ‘paediatric’ (fourth Friday of each month) clinic. There was a lack of an age-appropriate clinic for young adults. The introduction of a ‘transition’ clinic on the fifth Friday of each month has addressed this important issue. This clinic ensures that young people are supported to make the transition to adulthood. The young adults are taught to take responsibility for their own health, making informed choices and decisions regarding their well-being. The goal of the transition programme is to provide uninterrupted, coordinated care which is developmentally appropriate and psychosocially sound for the young person. It starts many years before the planned transfer to adult services and initially focuses on helping the young person develop independence and autonomy.  We have had three transition clinics so far with positive feedback from patients and their families. Further comments are welcomed.

Patient Feedback
The National Service is continually changing and developing. We take on board all feedback both from the patient satisfaction questionnaire distributed at each clinic, and from the newly introduced anonomysed feedback forms independently given out by the XP Support Group. We are delighted with the positive feedback we have had, and comments made by patients have results in a number of service improvements. Here are just a few examples:

· Nov 2011: There was a need to cater for various diets and give more choice to patients and their family for lunch. Action: Patients are now given meal vouchers during Friday all day multidisciplinary XP clinic instead of a sandwich menu.
· Aug 2011: During the multidisciplinary XP clinic, patients prefer to have control of their own schedule for the day; they would like to take more responsibility. Action: Patients given individual personalised timetables for the clinic.
· Sept 2011: The importance of arranging a convenient clinic date in order to avoid missed appointments, and giving the patient the opportunity to ask questions about the XP service prior to their clinic appointment was noted. Action: All new referrals contacted by phone by the XP nurses as a first point of contact.
· Nov 2011: Patients did not have an allocated safe area to leave their belongings when attending the XP clinic. Action: Locker space made available for the clinic.
Mar 2012: A credit card size XP information card requested by patients and XP Support Group. Action: ‘XP’ information card giving details on diagnosis/contact details/safety has been designed and approved by Guy’s and St Thomas’ Trust communications team.

We are trying to continually improve your service and are grateful for all your feedback.

The Website
The XP Service website has been developed and is now live.
Patients and other health care professionals can find links to patient information leaflets, XP Support Group details, information about the National XP Service and details about clinic, and the XP team members. We hope that guidelines for the care of XP patients will be accessed from this site in the future by healthcare professionals in the UK and abroad. We would like to hear your views about the website.

The Clinical Nurse Specialists
Sally Turner and Katie Mullard, the XP clinical nurse specialists, continue with all their hard work both in the hospital and as part of their outreach programme in the community.  They have been busy travelling the length and breadth of the country, visiting patients in their homes, schools, colleges, and places of work, assessing their sun protection and giving advice and support on all aspects of their care. The outreach programme is an important and valuable part of the service and has been discussed and promoted in clinic, in addition letters have been sent to all XP patients informing them of the availability of this service. The XP Support Group has also promoted this.  As an extension of this activity, Sally and Katie have arranged a formal study date at St Thomas’ hospital in July 2012 for school teachers/welfare representatives in order to education and facilitate good practice across the country. Please contact Sally Turner at St Thomas’ Hospital if you would like further details.

Education remains a high priority for the team. This is not only important for our personal development but also to increase awareness about XP and the National Service amongst the general public, UK and international dermatologists and other associated specialists. We have given numerous lectures/presentations at national and international dermatology, ophthalmology, and neurology conferences, and we are currently preparing for the upcoming British Association of Dermatologists (BAD) and the British Dermatological Nursing Group (BDNG) annual meeting in July 2012 where XP features heavily. Prior to this Sally and Katie will be visiting the long-standing and world-renowned XP service at the National Institute of Health (NIH) in the States for personal education and for ideas of service development and improvement in the UK. Sally and Katie will also be holding an XP education day for teachers and assistants of XP children at the end of June. If you have children of school age, could you please bring this to their attention as we plan to run more of these days in the future.

The XP team is aware that one of the most important aspects of the service is translational research, driving and improving clinical care for patients. We have recently been granted ethics approval for the first of, hopefully, many projects. As an initial step we plan to collect detailed clinical and genetic data on all XP patients attending the clinic with their consent. This will improve our understanding of the molecular basis of disease. Patient and their families will be sent the patient information leaflets on this project before their appointments at St Thomas’ Hospital. After an opportunity to ask questions and discuss details with the team on the day of their appointment, they will be asked for their consent. The team will also be working with national and international colleagues to drive translational research forward. Our key objectives are assessment of new topical treatments for the skin, validation of faster diagnostic tests, development of novel therapeutic approaches that might protect against neurological disease progression, and improvement and expansion of prenatal testing options for families at risk of disease.

Please do not hesitate to contact us with any queries.

I look forward to hearing from you.

Hiva Fassihi
Clinical Lead, Nationally Commissioned XP Service

Upcoming Events

27 June
XP Education Day
10am, Guys & St Thomas Hospital

22 July
Vounteer Training
10am, St Katharine’s Parmoor

22 July
Trustees Meeting

30 September
Last date for Owl Patrol Applications

3 November
Annual BBQ & FIreworks

4 November
Annual Meetiing – Freunde die Mondsheinkinder
For info email:info@xerodermapigmentosum.de

9-12 November
XP Family Support Group Retreat
For info email: kelley@xpfamilysupportgroup.org

10 December
Volunteer Training
10am,St Katharine’s

15-18 February 2013
Owl Patrol
4pm,St Katharines’s

28 September 2013
Auction Of Promises and Gifts
St Katharine’s,  S

Other News

Call for volunteers
We are looking for volunteers to help at the XP Children’s clinic. The clinic takes place on the 4th Friday of each month at Guys & St Thomas’ Hospital in London. Duties would involve escorting patients to their various appointments and looking after siblings in the play area. We are looking for 6-10 volunteers. Full training would be given at St. Thomas’ and travel expenses will be met. If you are interested, please contact Sandra Webb email info@xpsupportgroup.org.uk

We send our Best wishes to our volunteers Ally & Janet on their civil partnership which took place in February. Representatives from the families and volunteers of the Support group attended and witnessed the beautiful ceremony . Afterwards they enjoyed a reception at a hotel in Manchester. We wish Ally and Janet Good Luck with their new life together in Australia and look forward to seeing them in February when they will return as volunteers.

A new XP patient support group in Spain
We say welcome to Rodrigo Llano, an XP patient who has started a support group in Spain. The group is called “Grupo de Información y Apoyo Xeroderma Pigmentoso” and Rodrigo can be contacted by email  info.xerodermap@gmail.com

We wish Rodrigo good luck and look forward to working with him in the future.

Our New Website
Our new website will shortly be launched. There have not been any updates on our website for a little while because of this. Information about UV Protection, clothing and resources are still current.

Office Closures

The office will be closed from 29th June to 15th July for holiday.

During the Olympics & Paralympics, there will be a limited service from the office as Sandra will be a volunteer. Enquiries should be made by email info@xpsupportgroup.org.uk or messages left on the answer machine – 01494 456192 as they will be checked daily .

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XP Support Group

Instron House

Coronation Road

High Wycombe, Bucks HP16 0SG

United Kingdom

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