Supporting families—letter from our Chair

Dr Richard Barlow, Chair of Trustees, Action for XP
​XP patient and ambassador

​Dear UK families,

This letter has been sent to you to explain the new system for claiming reimbursement for costs incurred when attending XP multi-disciplinary team appointments at St Thomas and Guys Hospital at the Rare Disease Centre, London. The new system will come into effect as of January 2023.

Over the last year, Action for XP has evaluated total expenditure across all projects supporting the XP community. This has highlighted that, in addition to provision of photoprotection such as hats, gloves and UV film, the most significant cost to the charity is travel and accommodation for attendance of the National XP Clinic.

It is predicted that by the end of the year nearly £25,000 will have been spent on these travel and accommodation costs alone.  The amount claimed ranges from around £50.00 to in excess of £600.00, with the average cost per patient being £480.00. This, coupled with late notice requests, incurring higher costs and the operational difficulties created for our volunteer team, means that this situation is not sustainable if we are to protect the charity and continuation of all of our vital services.

Although there is some funding (circa £3,500) from NHS England this is unlikely to increase significantly and so, given the rising costs of travel, accommodation, and applicant claims it has been necessary to streamline the claim process, review eligibility and review what is fair and reasonable for our families in the current climate.

This week, a new system has been introduced (which supersedes previous arrangements) aimed solely to support those individuals/families who:

• are unable to afford the cost of travel to their appointment at the Rare Diseases Clinic, St Thomas and Guys Hospital, London (National XP Service, London)
• have not received  reimbursement from any other scheme i.e  NHS Healthcare Travel Costs Scheme (HTCS), and
• are not in receipt of other support i.e. DLA or PIP, but still consider that they are in a situation of severe financial hardship. 
  
  

So that our grants are only utilised when absolutely necessary we ask that, in the first instance you apply to the NHS Healthcare Travel Costs Scheme, before you request reimbursement from Action for XP. This can be done very simply and details are enclosed to guide you through this process.

Families/individuals will now be responsible for booking travel arrangements themselves and apply for the grant after their clinic appointment.
Subject to meeting the eligibility criteria and being in receipt of valid documentation, you can apply for a travel grant via our online application form for reasonable travel, and in some circumstances, accommodation.  The maximum awarded fund will be £250.00 - dependent on distance from home to clinic.  Payments will be made with 3-5 working days of successful application.

Attached is a FAQ sheet which should answer all your questions and guide you through the new process, it  also contains useful information about other grants available, for example the HTCS. https://www.nhs.uk/nhs-services/help-with-health-costs/healthcare-travel-costs-scheme-htcs/
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This decision has not been made lightly and has been taken following discussion and with full knowledge and support of the clinical team.
 
With best wishes
Action for XP team
 
Yours faithfully
Dr Richard Barlow
Chair of Trustees for and on behalf of Action for XP
Senior Dermatology Registrar – West Midlands, UK

Download our new Medical Travel Financial Assistance Advice guide HERE 
Queries to admin@actionforxp.org