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:[email protected]?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.
http://www.guysandstthomas.nhs.uk/our-services/dermatology/specialties/xp/overview.aspx
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
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.

Research
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