If a young person or child’s consultant thinks they will benefit from proton beam therapy, they will refer their case to the Proton Clinical Reference Panel. If the referral is approved, the consultant will contact a proton therapy centre abroad to arrange treatment.
If the referral is approved the proton therapy, plus your travel and accommodation costs, will be funded by NHS England. The way the funding works varies according to where you live in the UK:
- If you live in England, NHS England will pay for treatment and also cover your travel and accommodation costs
- If you live in Scotland, NHS England will pay for treatment, plus your travel and accommodation costs, then recoup the money from NHS Scotland
- If you live in Wales or Northern Ireland, your consultant will liaise directly with your local health board about funding for treatment, plus your travel and accommodation costs.
Help with travel costs
Once you or your child has been accepted at a proton centre abroad, someone from your local NHS trust will be appointed as a liaison person for you. This could be an oncology nurse, radiographer, social worker, department manager or your consultant’s personal assistant. They will contact you to discuss travel arrangements.
The NHS will fund economy return flights for a child and up to two parents or carers. If you are a young person aged 16 or over the NHS will fund flights for you plus one carer. However, if there is a recognised clinical need for two carers, NHS England will consider funding an extra carer on an exceptional basis.
If you are travelling to Switzerland and would prefer to take your car, the NHS will cover the cost of petrol, ferries and tolls from the UK to the therapy centre. It will also fund the cost of transport between your accommodation and the therapy centre, but costs must be kept down and based on public transport where possible.
If you are travelling to the USA, the NHS will cover the cost of a standard car-hire package organised by the therapy centre, plus petrol used when travelling to treatment. If car hire isn’t an option, the NHS can also fund taxis to and from treatment. If you stay in the Ronald McDonald House (accommodation for families of hospital patients) in Jacksonville, there is a free shuttle bus to take you to and from treatment.
The NHS won’t cover the cost of any medical treatment you or your child may need abroad that is not directly related to the proton beam therapy. So it’s important that everyone who travels abroad has travel and medical insurance. Your policy does not have to cover the proton beam therapy itself because this is already funded by the NHS.
If you travel to Switzerland, you will need to pay for travel and medical insurance yourself. You will also need to make sure everyone in your party has a European Health Insurance Card (EHIC). This entitles you to free state-funded medical treatment in any country that is a member of the European Economic Area (EEA).
If you travel to the USA, the NHS will refund your travel and medical insurance costs. Everyone in your party will also need to complete an Electronic System for Travel Authorisation (ESTA) visa waiver. This allows you to stay in the USA for up to 90 days. The NHS will refund the cost of ESTAs for patients and carers, and your local NHS trust liaison person can help you to apply for them.
Your NHS trust liaison person will help to organise your accommodation with the proton therapy centre. You can also contact the centre directly to find out what is available. The NHS will fund whatever accommodation the centre organises for you. If you want to upgrade your accommodation for any reason, you will need to cover the additional cost yourself.
What costs do we need to cover?
You will need to pay for:
- Any upgrades or optional extras beyond what’s described above
- Extra travel and accommodation costs if there are more than two parents, carers or siblings travelling abroad with a child or more than one person travelling with a young person aged 16 or over
- Cost of passports
- Any damages or breakages at your accommodation
- Food and refreshments.
CLIC Sargent provides grants to help with these costs – to find out more speak to your CLIC Sargent Social Worker or phone us on 0300 330 0803.
July 2013, next planned review 2014.