Travelling abroad for proton beam therapy

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1 If a young person or child has a certain type of cancer, their consultant may recommend they travel abroad to have a specialised form of radiotherapy called high-energy. High-energy isn t currently available in the UK. However, the NHS will pay for carefully selected patients to have proton therapy at hospitals in other countries, usually Switzerland and the USA, if this is felt to be the best treatment for them. Most children who need are treated in the USA. CLIC Sargent has developed this information sheet to explain the range of practical help and support that is available to you if you have to travel abroad for proton beam therapy for yourself, or with your child. Some of the information has been developed in partnership with the National Specialised Commissioning Team (NSCT), which is the NHS body that commissions services for people affected by rarer conditions, including some cancers. You ll find information about itself at Travel and accommodation 1 Benefits while you re abroad 3 Support from CLIC Sargent 5 Checklist 6 Tips from parents and young people 7 Where to go for more help and support 8 Travel and accommodation If a young person or child s consultant thinks they will benefit from, they will refer their case to the Proton Therapy Clinical Reference Panel. If the referral is approved, the consultant will contact a proton therapy centre abroad to arrange treatment. Funding treatment If the referral is approved the proton therapy, plus your travel and accommodation costs, will be funded by the NSCT. The way the funding works varies according to where you live in the UK: If you live in England, the NSCT will pay for treatment and also cover your travel and accommodation costs If you live in Scotland the NSCT 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 Page 1 of 8

2 carer. However, if there is a recognised clinical need for two carers, the NSCT 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. Travel insurance 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. 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). 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. Accommodation 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 you 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 a grant to help with these costs (see page 5). If you travel to the USA, the NHS will refund your travel and medical insurance costs. Everyone in your party will Page 2 of 8

3 Benefits while you re abroad If you travel abroad for, you may still be able to receive any benefits you are claiming. The rules vary for different benefits, and depend on how long you are away and the reasons for your absence. They also depend on whether you are travelling within or outside the European Union. The rules for payment of benefits abroad are quite complicated. If you need to travel abroad for treatment for yourself or your child, it may be worth discussing your situation with a specialist benefits adviser to make sure you are fully informed about all the options available to you. Contact your local Citizens Advice Bureau (CAB) or phone CLIC Sargent on and we ll put you in touch with one. Disability Living Allowance Disability Living Allowance (DLA) can be paid for up to 26 weeks if you are abroad for any temporary purpose, and provided Great Britain is still the country where you ordinarily reside. If you re likely to be away for longer than this, DLA may still be paid if the absence is temporary and is for the specific purpose of being treated for an illness that began before leaving Great Britain, and the Department for Work and Pensions agrees you should be treated as if present in Great Britain. If you are travelling to the European Union (EU), it may be possible to receive DLA care component without any restriction on your length of stay or purpose of travel. Seek specialist advice if you are travelling to the EU for longer than 26 weeks. Carer s Allowance Provided you are ordinarily resident in Great Britain, you can receive Carer s Allowance while abroad in the following situations: For four weeks provided you are accompanied by the disabled person you care for, unless you are permitted a break from caring under the Carer s Allowance rules (seek specialist advice on this) Where a temporary absence (absence of less than 52 weeks) is for the specific purpose of caring for a disabled person who is absent from Great Britain and who remains entitled to DLA care component while they are absent. However, if you are travelling to the European Union you may be able to take your Carer s Allowance with you without any time limit seek specialist advice if this is the case. Child Benefit If you are ordinarily resident in Great Britain, you are treated as present and able to receive child benefit: For the first eight weeks of temporary absence (absence of less than 52 weeks) For the first 12 weeks of absence, if you and your child both leave Great Britain so that you, your partner or your child can have treatment. However, if you remain in Great Britain and only your child travels for treatment, your child is treated as present in Great Britain during any temporary absence for the purpose of treatment for an illness that began before their absence. This means that you could receive Child Benefit for up to 52 weeks (the limit of temporary absence), if you remain in Great Britain. If your child travels to another European Union country you may be able to receive Child Benefit for them without any time limit as long as they remain your dependent. Page 3 of 8

4 Employment Support Allowance You can t usually get Employment Support Allowance (ESA) if you aren t present in Great Britain. However: It can be paid for the first four weeks of absence providing the absence is unlikely to exceed 52 weeks Both contribution-based and income-related ESA can be paid for the first 26 weeks of any absence from Great Britain provided the absence is unlikely to exceed 52 weeks and the absence is solely in connection with treatment of a disease or disablement that is related to your limited capability for work or the disease and disablement of a dependent child whom you are accompanying. You can receive ESA indefinitely only if you received permission from the Department for Work and Pensions before leaving Great Britain, and your absence is for NHS-funded treatment at a hospital or other institution outside Great Britain. If you are travelling to the European Union and your absence is likely to be longer than 26 weeks, you should seek specialist advice as you could be entitled to ESA for longer. Please note that new government legislation limits the length of time you can claim ESA once you are in a Work Related Activity Group to one year. This applies whether you are in the UK or not when the year ends. Housing and Council Tax Benefits You can receive Housing and Council Tax Benefits if: You remain liable for rent and/or Council Tax during your absence Your absence is unlikely to be for more than 52 weeks (or, in exceptional circumstances, you are unlikely to be away for significantly longer than this) and The reason for absence is medical treatment for you or a dependent child. If the absence is not in connection with medical treatment you can normally only receive Housing Benefit for up to 13 weeks absence. Income Support and Job Seeker s Allowance You cannot normally get Income Support (IS) or Job Seeker s Allowance (JSA) if you are not in Great Britain, but there are a few exceptions to this rule if you are accompanying a child for treatment, rather than travelling for treatment yourself. If you were entitled to IS or JSA immediately before leaving Great Britain and are temporarily absent, your entitlement can continue for eight weeks if: Your absence is unlikely to be for more than 52 weeks, and Is solely in connection with arrangements made for the treatment of a child or young person. The treatment must be carried out by, or under the supervision of, a person qualified to provide medical treatment and the child must be a member of your family. If you are the IS/Income-based JSA claimant and your partner goes abroad while you stay in Great Britain, you can be paid for your partner for up to eight weeks if s/ he meets the condition above. After this you would be treated as if you were single. For JSA purposes, you should be treated as available for and actively seeking work while abroad for the treatment of your child under the above rule. If you are claiming IS and are travelling abroad for proton beam therapy on the NHS, then IS could continue indefinitely provided other entitlements are met. This is a complicated area, so it is best to seek specialist advice. Page 4 of 8

5 Tax Credits If you are ordinarily resident in Great Britain, Working and Child Tax Credits can be paid for the first 12 weeks if any temporary (less than 52 weeks) absence abroad is for the treatment of your own or a dependent child s illness. If the temporary absence is for some other purpose you are only entitled for the first eight weeks of absence. If you (or your partner) spend longer abroad than the permitted periods above, you will cease to be entitled to tax credits. If you fail to notify HM Revenue & Customs of this within one month, you may be overpaid and could be subject to a penalty. Payment of Working Tax Credit is also subject to rules concerning hours of work, and you can only continue to receive it if you also qualify as being in work during your absence (this would be the case if you yourself are not at work because you are too ill to work). Get advice on this point if you are not sure. Under European Union (EU) rules you can be paid Child Tax Credit (CTC) for a child resident in another EU country, so CTC may be payable for longer than 12 weeks if your child travels to the EU for treatment. Want to know more about benefits? For the most up-to-date information about benefits in Great Britain go to For information on benefits in Northern Ireland visit You ll also find information tailored to each of the UK countries on the CAB website go to Support from CLIC Sargent CLIC Sargent is the UK s leading cancer charity for children and young people, and their families. We provide clinical, practical and emotional support to help them cope with cancer and get the most out of life. One of the services CLIC Sargent provides is an exceptional grant for young people or families of children travelling abroad for. The grant is to cover extra costs not covered by the NHS, such as food and refreshments. How much is the grant for? The grant is for up to 250, with a further 250 made available to families who have an exceptional need. In addition, there is an automatic grant of 170 we make to young people with cancer, or to parents and carers of a child diagnosed with cancer to help with immediate financial needs. Are you eligible? Any family with a young person (aged 24 or under) or child who is receiving treatment for cancer can apply for a grant. We re committed to helping everyone who needs us, so we don t use means testing. How do you apply? All applications for grants need to be made through a health or social care professional, such as your CLIC Sargent Social Worker. Please call us on if you are unsure about who can apply on your behalf. How long will it take? We aim to respond to your request and send a cheque within five working days. Page 5 of 8

6 Checklist If a young person or child has to travel abroad for, the NSCT recommends you use this checklist to make sure you have everything ready. Up-to-date passports with six months travel time remaining Electronic System for Travel Authorisation (ESTA) visa completed at least 72 hours before departure (USA only) European Health Insurance Card (EHIC) (Europe only) Flight arrangements confirmed Travel insurance confirmed Three-month supply of all regularly prescribed medications Driving licence (photocard and paper counterpart) if planning to drive Travel adapters for electrical items If you are travelling with a small child, do you need a car seat? You should liaise with USA treatment centres as they organise them for many families Have you notified your local NHS trust or arranged a supply of any special dietary requirements such as baby formula during your stay abroad? Have you notified your local NHS trust if you or your family have been exposed to any illnesses in the last two months, such as chicken pox? If a young person or child needs a feeding pump, or has a tracheostomy, have you checked that the proton centre s equipment is compatible? If you need to carry more than 100ml of liquids on the flight (such as liquid foods or medicines) have you got a letter from your consultant that states this is for the travel regulations? (Your local NHS trust can give you further advice about travelling with any medicines or medical equipment.) Page 6 of 8

7 Tips from parents and young people We asked young people and parents of children who have travelled abroad for for their top tips here s what they told us. Before you go, try to make contact with another UK family who has experienced proton beam therapy via the Facebook support group (visit for details), your CLIC Sargent Social Worker or your radiographer Don t do it on your own! Involve family and friends, and have them stay with you if possible Don t take electrical items like hairdryers to the USA with you, as the power output is weaker than in the UK. These can be bought cheaply at local shops If you are flying, make sure you have plenty of time between flight transfers, or stay overnight and get a connecting flight the following morning Be prepared for long immigration queues when arriving in the USA Ask friends and family to help with fundraising to cover living costs and any loss of income while you are away Attend as many social events for families as possible at the proton centre to make contacts and ease the stress load Make contact with the proton centre via before you leave if there are any specific questions that your doctor in the UK can t answer If you are using a hire car in the USA, ask the proton centre if they have sat navs you can borrow or buy one out there it may work out cheaper than hiring one Make sure you install Skype on your phone, ipad or laptop before you go and ask your friends and family at home to install it too it s a good way to stay in touch If you are travelling to the USA, buy a pre-pay phone as soon as you get there it s cheaper and you ll need it to stay in touch with the proton centre Keep correspondence containing information about your accommodation with you it may be useful at customs and immigration. Page 7 of 8

8 Where to go for more help and support A young person or child s consultant is responsible for their medical treatment, referral to a proton therapy centre abroad and any follow-up care they may need. They will be able to answer your queries about any aspect of the treatment. If you have any questions about your travel and accommodation arrangements, contact your designated liaison person at your local NHS trust. You can also contact the centres directly for advice about accommodation: University of Florida Proton Therapy Institute Procure Proton Therapy Center, Oklahoma City Paul Scherrer Institut, Villigen, Switzerland To download a leaflet about NHS funding for travel and accommodation, visit the NHS Specialised Services website at The NSCT is also happy to answer any questions you may have. You can call them on For details of other people and organisations that can provide help with fundraising and support for children and young people travelling abroad for proton beam therapy, visit CLIC Sargent is the UK s leading cancer charity for children and young people, and their families. We provide clinical, practical and emotional support to help them cope with cancer and get the most out of life. For more information, please speak to your CLIC Sargent care professional, call us on or visit us at Ref: SER081_12121 Version 2.0: June 2012 (version 1.0 web only) Next planned review: 2013 For information about the sources used to put this information sheet together, or if you have any comments or queries about it, please contact CLIC Sargent on and ask to speak to the Information Manager. Alternatively, please info@clicsargent.org.uk with the subject line Publication query. Please note that everyone s experience will be different and may not follow the order outlined in this publication, and that services will differ across the UK. CLIC Sargent cannot accept any responsibility for information and services provided by third parties, including those referred to or signposted to in this publication. While we take every care to ensure that the information provided is accurate and up-to-date at time of printing, CLIC Sargent cannot accept liability for any loss or damage resulting from any inaccuracy or omission in this publication. Information should not be relied on in place of appropriate professional or other advice specific to your circumstances. Page 8 of 8