Useful resources for xeroderma pigmentosum (XP)

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1 Useful resources for xeroderma pigmentosum (XP) This leaflet provides useful information, including benefit and employment advice for people with xeroderma pigmentosum (XP). We hope it will be a good starting point for you to begin your research on how best to manage your condition. If you have any further questions, please contact the XP specialist nurses. General sources of information National xeroderma pigmentosum service at Guy s and St Thomas The national service was established in April 2010 and offers specialist multidisciplinary clinics for people with XP. The following website contains information about the clinics and the members of the XP team, as well as access to all the XP patient information leaflets: XP Support Group (XPSG) The XPSG is a very useful source of information on all aspects of living with XP. They can help to arrange travel and hotel accommodation (as required) for you to attend the National XP clinic at St Thomas Hospital. You can also apply to the XPSG for a grant to install UV protective window film or to purchase a UV meter. t: e: xpsg@btinternet.com Benefits you may be able to claim Applying for benefits As XP is a chronic (long-term) health condition, there may be financial resources available to help you to maintain your independence and to manage your condition. To find out if you are eligible for any benefits, please contact the Benefits Enquiry Line on , or visit for more information. Health and social care assessments If your XP makes it difficult to cope with daily life, you can ask for support from your local authority. Local authorities have a duty to assess anyone who appears to need the community care services they provide. The assessment will establish what your difficulties are and enable local authorities to provide the best possible service to you. You should be involved in the decision-making process and, if appropriate, a care plan may be created for you. Contact your local authority to get advice about an assessment. The following website has useful information about adult and children s social care:

2 Disability living allowance Disability living allowance (DLA) is a tax-free benefit for children and adults with disabilities to help with extra costs you may have. You can get DLA whether or not you work. Please note that from 2013 a new personal independence payment will replace DLA for disabled people aged 16 to 64. To find out more, please contact your local social services department or see the following website: people/dg_ Carer s allowance If you are caring from someone with XP, you might be entitled to carer s allowance. To find out if this applies to you, visit: Support for carers If you look after somebody with XP, the Carers Direct website is a useful source of information, support and education. Blue badge (disabled parking badge) People with XP can apply for a blue badge to enable them to park in disabled parking spaces, close to where they need to go. This can significantly reduce the amount of ultraviolet exposure to the skin. Please ask the XP nurses for a letter of support to help your application. Unfortunately, we cannot predict whether you will be awarded a blue badge because your local authority will make the final decision. Disabled facilities grant A disabled facilities grant is a local council grant of up to 30,000 to help towards the cost of adapting your home to enable you to continue living there. For example, you could apply to have UV protective window film installed in your house, or any other equipment that helps you to manage your XP. Prescription charges Prescription prepayment certificates (PPCs) are available in England and can save you money if you are on a repeat prescription. Some people are eligible for free NHS prescriptions please call or see the following website for further details: School, college further education and employment Your place of education or employer has an obligation to make reasonable adjustments to allow you to study or work safely and effectively with a long-term medical condition or disability. For example, installing window filter film in a classroom or office, or replacing steps with a ramp if you use a wheelchair. The XP nurses can visit your school, college, university or workplace, or provide advice over the phone.

3 Please see the following websites for more information: Schools and education Employment Equality Act 2010: Help available for hospital appointments Information about clinics and services The following link includes useful information about the XP clinics at St Thomas Hospital: Transport to hospital If you are travelling to St Thomas for an appointment, you are entitled to reimbursement of your travel costs if you are on any of the following benefits: income support working families tax credit working disabled person tax credit income based jobseeker s allowance pension credits a certificate of low income called a HC2 (AG2) or HC3 (AG3). If it is medically necessary for you to be escorted to your hospital appointments, your escort can also claim back their travel costs. Please ensure that you bring evidence of your entitlement to the above benefits, as well as your travel receipts. For more information, please see: Disabled parking at Guy s & St Thomas Hospitals If you have a Blue Badge you can park in the special disabled parking spaces when you visit the hospital. To find out about the location of disabled parking, please see the maps on the GSTT website: Equipment to help with ultraviolet (UV) protection UV window filter film (Dermaguard ) Dermagard is a clear polyester coating which is applied to existing glass. It keeps out almost all the ultraviolet light, while allowing daylight and clear vision through the glass. For more information, please contact Bonwyke Advanced Window Films on , or visit

4 Ultraviolet (UV) meter An ultraviolet meter can help you to assess the level of ultraviolet risk in your environment. The PUV-360 pen UV meter and the Solarmeter 5.7 UV meter have both been tested by our Medical Physics Department at the hospital and have been found to be effective in measuring UVA and UVB. Please ask the XP nurses for more information. UV meters can be purchased from the companies below: PUV-360 meter e: pedak.nl Solarmeter t: Please note: UV meters are not classed as a medical device. Good judgement must be applied, and there is no published safe level of UV for people with XP. Protective clothing The following selection of companies supply range of UV protective clothing and accessories: Sunscreen Sunscreen preparations contain substances that protect the skin against ultraviolet (UV) damage, but should not be used as a substitute for covering the skin and avoiding sunlight. We also recommend wearing a lip screen. There are many SPF 50+ sunscreens with a high UVA rating available from shops and chemists. The following sunscreens/lipscreens can be prescribed by your GP. Please ask the XP specialist nurses if you would like to try some samples. Sunsense Ultra (SPF50+) Anthelios XL Melt-In cream (SPF 50+) Uvistat cream (SPF 50+) Uvistat lipscreen (SPF 50) Other information Skin cancer The following website has useful information about UV protection and detecting skin cancers:

5 Contact us If you have any questions or concerns about XP, please contact the XP nurse specialists on or (Monday to Friday, 9am to 5pm). Out of hours, please leave a message on the answer phone with your contact details, or send us an sally.turner@gstt.nhs.uk (children s XP nurse specialist) Hermanus.Louw@gstt.nhs.uk (adult XP nurse specialist) For more information, please visit us at Further sources of information Patient Advice and Liaison Service (PALS) To make comments or raise concerns about the Trust s services, please contact PALS. Ask a member of staff to direct you to the PALS office or: t: at St Thomas t: at Guy s e: pals@gstt.nhs.uk Knowledge & Information Centre (KIC) For more information about health conditions, support groups and local services, or to search the internet and send s, please visit the KIC on the Ground Floor, North Wing, St Thomas Hospital. t: Language support services If you need an interpreter or information about your care in a different language or format, please get in touch using the following contact details. t: fax: NHS Direct Offers health information and advice from specially trained nurses over the phone 24 hours a day. t: w: NHS Choices Provides online information and guidance on all aspects of health and healthcare, to help you make choices about your health. w: Become a member of your local hospitals, and help shape our future Membership is free and it is completely up to you how much you get involved. To become a member of our Foundation Trust, you need to be 18 years of age or over, live in Lambeth, Southwark, Lewisham, Wandsworth or Westminster or have been a patient at either hospital in the last five years. To join: t: e: members@gstt.nhs.uk w: Leaflet number: 3545/VER1 Date published: October 2012 Review date: October Guy s and St Thomas NHS Foundation Trust