CAR T-cell therapy: checklist for carers

Caring for someone during CAR T-cell therapy can be physically and emotionally demanding. Having a support system you can rely on at any time is important.

You can find support in many places including your friends and family, our support line and our online forum. We share some ideas on where you can find support on our page on caring for a loved one getting CAR T-cell therapy.

Most CAR T-cell therapy-related side effects develop in the first 30 days after infusion. But they could happen later and may require immediate medical attention. Infections and a low immune system can be ongoing issues for months or even years after CAR T-cell therapy.

It is important to recognise the signs and symptoms that require urgent help. Contact your hospital team immediately if you notice any of the following symptoms:

• A high or low temperature
• A cough, sore throat or other signs of infection
• Neurological symptoms like becoming confused or restless, especially if it comes on suddenly
• Quickly becoming more ill
• A sudden increase in pain

Familiarise yourself with the signs to spot these and make a plan with your health team on what to do if you identify them.

You can find a list of side effects on our CAR T-cell therapy recovery and side effects page.

Keep your hospital’s emergency contact details, including out-of-hours contacts, at hand.

You may want to stick a copy on your refrigerator so it is in view for any visiting friends and family. Some carers from our community have found it helpful to change their phone wallpaper to a list of emergency numbers, so they are easily accessible when needed.

Having an emergency bag ready can be helpful in case your loved one needs to go into hospital unexpectedly. Packing ahead means you’ll have everything you need to hand and won’t need to look for things in a rush.

Here are some helpful items to include:

• Comfortable clothes and basic toiletries
• Any medications they are taking
• Snacks or energy bars for you or your loved one
• A blanket and some light layers
• A copy of their most recent clinic letter or discharge summary

You may also find it helpful to make a list of things you may need to grab last minute, like phones, tablets and chargers.

Knowing your loved one’s hospital’s visiting hours and facilities can make a big difference in how you plan your visits and handle unexpected situations.

Call the hospital or your loved one’s Clinical Nurse Specialist (CNS) in advance and ask them about:

• visiting hours and if you can stay overnight
• parking and transportation options
• available amenities, like cafes, laundry services, a fridge, kettle, and Wi-Fi access.

Some hospitals may offer some of your loved one’s treatment as “ambulatory care”, where they stay in a nearby hotel and attend hospital for treatment. If this is available for your loved one, ask their CNS about the facilities and visiting arrangements.

A Blue Badge can make travelling to appointments more manageable by allowing you to park closer to your destination, including near the hospital. You can check if you’re eligible and apply through the gov.uk page.

You may also qualify for free parking at the hospital, get certain travel cost refunds, and congestion charges and ULEZ (ultra-low emission zone) concessions.

Your CNS or welfare rights adviser can help you with the required paperwork.

Find out more about help with travel costs on our practical and financial support page.

If possible, it is good to have one or more trusted people who can step into your caring role in case you’re unwell or need a break.

Other carers have told us that sharing the load meant they could sustain their energy levels and provide better support where it is needed.

Remember to make sure all carers know important details regarding your loved one’s treatment, symptoms to monitor, and how to deal with emergencies. It could be a good idea to share this checklist with them.

Some people may not be able to rely on friends and family for support. Our page on caring for someone having CAR T-cell therapy has some ideas on where you can find reliable support.

Keeping a notebook or spreadsheet can be invaluable for recording daily symptoms, side effects, and any questions that come to mind between appointments. Recording these details daily helps ensure that nothing important is forgotten, like when symptoms began or how severe they were.

It is important to let your loved one’s medical team know of any new symptoms. A consistent log can help their medical team understand patterns and adjust treatment if needed. Remember if any of the symptoms above arise you should contact your loved ones medical team immediately. If anything feels “off”, don’t wait for the symptoms to worsen. Contact your loved one’s care team immediately.

Keeping loved ones updated can be a challenge, especially when your time is limited. Think of ways to share updates that are easy for you.

We know carers have found group chats, an email list, or private social media groups helpful. If your loved one is feeling well enough, let them send updates when possible.

CAR T-cell therapy-related costs can strain your finances. You can help offset some of these costs by applying for grants, benefits, and travel assistance programs. If you are still paying for prescriptions, speak to your loved one’s CNS about applying for a prescription exemption card.

Your loved one’s CNS can also advise you on how and where to get advice on financial support. You can also contact Macmillan Cancer Support’s Services and ask to speak to a financial or welfare advisor.

You can find more information about support available to you on our practical and financial impacts of CAR T-cell therapy webpage.

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.

The following organisations have funded this information but have had no input into the content or direction of the project: Autolus Therapeutics (a pharmaceutical company) and Beefy’s Charity Foundation.

Read about how we work with the pharmaceutical industry.