Private XP services

Caring for private patients with xeroderma pigmentosum (XP)

 

What we offer

Private patients can either have a dermatology consultation or attend the all day multidisciplinary xeroderma pigmentosum (XP) clinic.

For prices, please phone 020 7188 6351 or 020 7188 6339.

All profits made by the private XP service are invested to benefit the NHS service at Guy's and St Thomas'.

Dermatology consultation

This is appropriate for both patients with suspected XP or those with a confirmed diagnosis. 

Patients are reviewed and assessed by a consultant dermatologist, a national expert in XP. Bloods tests are performed if clinically indicated.

If any skin lesions are detected on examination, a separate appointment will be required to perform biopsies or excisions. We may recommend that the patient is seen in the multi-disciplinary XP clinic, if clinically indicated. 

Multidisciplinary XP clinic

This is appropriate for patients with a confirmed diagnosis of XP. 

We offer a high-quality comprehensive multidisciplinary approach to the management of patients with Xeroderma Pigmentosum in an organised co-ordinated manner over a 1-2 day period. Patients undergo the assessments and investigations below as clinically indicated. 

After the appointment, we will send you a detailed report of the reviews, examinations, investigations, including a CD of all images, and advice on the further management of your patient. 

  • Dermatology

    All patients are reviewed and assessed by a consultant dermatologist, a national expert in XP.

    There is a careful and detailed skin examination with the aim of early diagnosis of skin cancers. All suspicious lesions will be biopsies/excised on the same day.

    The pathogenesis of the disease will be discussed and advice on ultraviolet (UV) protection given. Blood will be taken for vitamin D assessment and other relevant indices.

  • Dermatological surgeon

    All necessary dermatological surgery is performed by a consultant dermatological surgeon, experienced in looking after patients with XP.

    Advice is also available on treatment of pigmentation and skin cancers with topical therapies and lasers. Mohs micrographic surgery and plastic surgery are not included but can be arranged as a separate appointment, if required.

  • Dermatopathology

    All histological samples from skin biopsies/excisions will be reviewed by a consultant dermatopathologist experienced in XP.

  • Ophthalmology

    All patients are reviewed and assessed by a consultant ophthalmologist, a national expert in XP.

    There is a careful and detailed eye examination with appropriate advice on ocular UV protection, management of dry and uncomfortable eyes, and early diagnosis and treatment of ocular cancers.

  • Neurology

    All patients are reviewed and assessed by a consultant neurologist, paediatric or adult as appropriate.

    There is a full neurological examination and appropriate investigations planned including audiometry, nerve conduction studies and EMGs, and brain MRI.

  • Psychology

    All patients are assessed by a consultant in clinical neuropsychology. Advice and support on the psychological aspects of disease will be available.

    Comprehensive psychometric testing taking up to three hours will be conducted as clinically indicated.

  • Clinical nurse specialists 

    There will be education and advice from the XP clinical nurse specialists on UV protection (sunscreens, protective clothing, UV filter window films, and UV meter used to assess risk in different environments).

  • Diagnosis

    If there is no definitive diagnosis of XP, a skin biopsy will be taken and examined for DNA repair at the Genome Damage and Stability Centre, University of Sussex.

    Assignment of complementation grouping will also be conducted.

  • Genetics

    All patients are reviewed by a consultant clinical geneticist. The inheritance of this autosomal recessive disease will be discussed and appropriate genetic counselling given.

    Blood is taken for mutational analysis. If necessary, advice on prenatal and pre-implantation genetic diagnosis is available.

  • XP imaging

    Detailed and high-quality photographs will be taken for monitoring skin and eye disease. A CD of all images will be sent to the patient after their appointment.

  • Research

    Patients will be given the opportunity to be involved in UK XP clinical trials.

  • Other

    All patients will have the opportunity to meet and talk to a representative from UK XP Support Group (XPSG).

Information for patients from European Economic Area (EEA) countries

  • What you need to know

    If you are eligible, you can be referred to the UK for treatment under the European Economic Area (EEA) healthcare arrangements. 

    We accept an E112 or S2 form issued by another EEA member state for planned treatment in a National Health Service (NHS) hospital if this has been authorised by your local health or social service authorities.

    The form means that the patient will be treated electively as an NHS patient (not private) and the cost of the treatment will be met by the referring country. Costs used are the same that we apply to our local NHS patients. Same waiting lists rules apply to EEA referred patients.

    The E112 form does not cover the cost of transport between the two countries or from the airport to the hospital and back. This and other costs related to your stay or your escort’s in the UK will need to be met by you. You should make enquiries with your local health authorities as to whether they will help you meet some of these expenses.

    Your health authorities will be able to give you more information on the application process and conditions that would have to be met for the application to be successful. Your treating consultant will most likely be asked for medical details to support your application process.

    Please bear in mind that this hospital trust, the consultant in the UK or any other authorities in this country do not have any say in this matter - it is entirely the decision of the referring state's health and social services whether an application for treatment in the UK will be successful or not.

    The form will specify the dates and name of the hospital where treatment will be provided.

    When the E112 has been authorised we can confirm the treatment arrangements. The E112 form should be passed on to Vojislav Micunovic ovu@gstt.nhs.uk for validation purposes.

    If on the other hand, the application is not successful then the other option would be to access treatment as a private paying patient.  You would need to let us know whether you wish to do so and we can put you in touch with the right people who can arrange this.

Important information for private patients and embassies

  • What you need to know

    Please let us know if you are self-funding or your embassy is arranging your healthcare in the UK.

    Your hospital doctor or embassy doctor will need to send us a referral letter. Please see referrals to XP service for more information.

    Patients

    Before your appointment in the XP clinic, please ensure that you register at the Private Patients Office, Westminster Bridge Consulting Rooms, Westminster Bridge Road, St Thomas’ Hospital.

    We will not be able to see you in the clinic unless you have registered as a patient. This can be done on the day of your appointment or in advance.

    Embassies

    In order to confirm your patient’s appointment, we would be grateful if you could fax a letter of guarantee to 020 7928 1621.

    Please ensure that the patient’s translator is able to stay for the duration of the multi-disciplinary clinic (9am-5pm).