CAR T-cell therapy: practical and financial support

Travelling to CAR-T therapy-related appointments can be costly. You may need to visit specialist centres for treatment. After your CAR-T infusion, you may need to stay within an hour of the hospital for at least two weeks. Some people may have to visit their local hospitals once or twice a week for blood tests or infusions for several weeks after they’ve been discharged.

These travel costs can add up, but some financial support is available. In some cases, travel expenses are fully or partially reimbursed. Carers travelling with their loved ones may also qualify for some financial support.

Here are some ways you may be able to reduce travel costs:

• Healthcare Travel Costs Scheme: If you use the bus or train to get to appointments, you may be eligible for a full or partial refund. The scheme may also cover petrol costs or taxi fares. Carers and dependents may also qualify under this scheme.

• Hospital reimbursement programs: Some NHS hospitals, like University College London Hospitals, offer travel reimbursement for attending appointments. Ask your Clinical Nurse Specialist (CNS) or the hospital’s Patient Services for more details.

• Local transport schemes: Check with your council or GP about local transport schemes and services that may be available. Your CNS can guide you to available resources.

• Charitable grants: The Anthony Nolan Grant provides financial assistance for people undergoing CAR-T therapy to help with travel and other related costs. You may also qualify for grants and benefits from other charities.

• Blue badge and other special badge schemes: You may qualify for a blue badge to help with parking fees. Some people with cancer also get discounts on tolls, the London congestion charge, and the ultra-low emission zone (ULEZ) charge. Your CNS or welfare rights adviser can help you with the required paperwork.

• Insurance claims: Some life or medical insurance policies may allow claims for travel expenses. Contact your insurance provider to see what costs they cover.

• Clinical trial reimbursement: Many people participating in CAR T-cell therapy clinical trials have their travel costs fully reimbursed.

Having CAR T-cell therapy can have a big impact on your finances. You might be working fewer hours, which reduces your income. You may also face extra costs like heating, transport, or new clothing.

Here are some possible sources of financial help:

For people with blood cancer: You may qualify for disability benefits like Statutory Sick Pay (SSP), Personal Independence Payment (PIP), and low-income benefits. You can read more about benefits on our money and work page.

For carers: If you’re caring for someone having CAR T-cell therapy, you may qualify for financial help and benefits like the Carers Allowance and Carer’s Credit. Learn more on our Practical Support for Carers page.

For people with blood cancer: You may be eligible for an emergency grant from your local council. Some charities also provide financial support including the Anthony Nolan Grant and the Cost of Living Fund from Leukaemia Care and Leukaemia UK. Leukaemia Care also has the CAR-T Away from Home Service to help cover costs if you need to be away from home while having CAR T-cell therapy.

For carers: you may be eligible for the Carers Trust Grant or a respite break from the Respite Association. Carers First has a helpful page about other grants carers may be eligible for.

Turn2us has a grants and benefits search that may help you find other financial support not mentioned here.

You may be able to get help with energy and water bills. Tell your suppliers as soon as possible if you're finding it difficult to pay, as they can often put support in place to help.

There are also services available to help if you're struggling to afford food.

For further details, see our Money and Work page.

Prescriptions are free for everyone in Northern Ireland, Scotland and Wales. In England, you should be eligible for a medical exemption certificate to get all your prescriptions for free.

If you still pay for prescriptions, apply for a medical exemption certificate. Your GP or CNS can guide you through the process.

You can get help caring for your children in many ways before, during, and after CAR T-cell therapy.

1. Family and friends may be able to help with childcare and school pickups.
2. Your child's school may be able to help with childcare before or after school. They may also be able to offer emotional support and extra reassurance for children during this time.
3. Your CNS may know about local childcare support. They may also signpost you to your local social services department. Social services can assess your needs and if you're eligible, provide practical help. This could include helping with shopping, housework, and applying for other benefits.
4. Charities like Home Start have trained parent volunteers who visit families and provide help and support by looking after children for a few hours a week.
5. Financial help from the government: Depending on your situation, you may be eligible for free childcare, working tax credits, or tax-free childcare. You can learn more on the Childcare Choices website.

You can learn more about support with childcare on Macmillan Cancer Support’s Childcare page.

Caring for pets while receiving CAR T-cell therapy may feel particularly difficult, especially because you have to stay at the hospital for a couple of weeks during your treatment.

You may worry that you are no longer able to look after them. But many options are available.

1. Friends and family: may be able to help by feeding, walking, or temporarily housing your pets. They can take your dog for a walk or clean your cat’s litter once a day.
2. Your local vet: may offer volunteer schemes or have advice on temporary care options, such as animal shelters. Some volunteers may temporarily home your pets.
3. Some charities, like The Cinnamon Trust and Mayhew can help you find someone to look after your pet while you undergo treatment. They may offer volunteer pet walkers, foster services, or temporary pet care.
4. If charity options aren’t available, look for pet-sitting services, local kennels/catteries, or options like Borrow My Doggy, Cat in a Flat or Pawshake.
5. In some cases, a social worker may provide advice on how your pet can be looked after while you are at the hospital.

Finally, depending on where you live, if you’re admitted to a hospital, your local council has a duty of care to care for your pet. Contact your local council for more information.

If you’re having CAR T-cell therapy, or you care for someone who is having it, you might be concerned about work. There are laws and resources in place to help.

The law protects you from being discriminated against at work because of cancer. You cannot be treated less favourably than people who do not have cancer because of your diagnosis. You’re also protected if you care for someone with cancer.

You may feel comfortable returning to work once you feel physically able, but you may feel like you need more time after your treatment. Generally, around six months off after treatment is recommended, but your hospital team can guide you.

When you return to work, the Access to Work grant can help you pay for equipment you may need, the cost of travelling to work (if you cannot use public transport), vehicle modifications, or physical adjustments to your workplace. The grant can also help with support workers if needed.

You may also want to speak to your employer about their return-to-work policy, what reasonable adjustments they can make to support you through your CAR T-cell therapy journey, how much time you can take off, and their sick leave policy. Examples of reasonable adjustments they may be able to make include flexible working arrangements, reducing your hours, or adjusting responsibilities during this time.

You can also speak with someone at the Citizens Advice Bureau to understand your rights at work and what options may be available to you.

If you’re worried about money, you may qualify for some benefits and grants that may ease some of these worries.

It is always a good idea to discuss the timings of trips with your medical team, even after your CAR-T treatment. Your hospital team will usually advise you not to go on holiday during or for a few months after your treatment. This is to give you plenty of time to recover.

But if your doctor approves, you may be able to plan a holiday during recovery.

A little preparation can make your trip more enjoyable. It’s also important to plan what to do if you are unwell while away. Speak to your doctor in advance about ways to make your trip smoother - including choosing a destination, instructions relating to medication dosage, and emergency antibiotics.

Think about reasonable adjustments you may require at the airport and any accommodation you book. For example, you may feel tired and unable to walk long distances and may want to use a wheelchair to preserve your energy.

It is strongly recommended that you get travel insurance to cover cancellation, trip interruption, or medical costs while on holiday. Blood Cancer UK has partnered with Staysure to make travel insurance easier for people living with blood cancer. Read more about our partnership, including a discount code, on our Travel Insurance page.

This information was developed in partnership with Anthony Nolan and has been accredited with the PIF TICK, the UK's only quality mark for trusted health information.

Last full review 2024. Next full review due 2027. We make factual updates to the information throughout this period.

Thanks to clinical nurse specialists Charina Ocampo and Maia Collins for checking the medical accuracy of this page.

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