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Top tips for travelling when you’re affected by a brain tumour

When you or a loved one is affected by a brain tumour, making holiday plans can become more complicated. Our community has suggested some handy tips for getting around more easily and affordably over the summer holidays.

This July, with summer well and truly upon us, we’re focusing on all things travel!

We know that when you or a loved one is affected by a brain tumour, travelling from place to place or making holiday plans can become more difficult or more expensive. So our community has stepped up with some handy tips for getting around easily and affordably, both in the UK and abroad.

There are several reasons why someone affected by a brain tumour might find travel trickier after a diagnosis. Limitations to travel may be due to:

  • treatments and medications
  • the effects of the tumour itself
  • lack of facilities en route
  • difficulty finding suitable holiday accommodation
  • difficulty finding affordable insurance.

We spoke to some members of our community about their experiences. Below, you’ll find their top tips for getting around when you, a loved one or a travel companion is living with a brain tumour.

Getting around in the UK

Ask for special assistance

Assistance is very helpful for train travel. It is free and easy to book.

Viv

Find out more about getting assistance when travelling by train (such as National Rail’s Passenger Assist), and assistance is also available on other public transport, like buses and coaches.

Check what railcards or bus passes you’re entitled to

We have a disabled rail card, which is only £20 per year, and we both get 20% of our fares.”

Viv

There are several schemes that may make it cheaper for you to travel around in the UK by public transport.

Although some local authorities include companion passes for assistants, carers or parents if you need help travelling on public transport, this is not the case in every authority. We recommend asking your council about this. You may need to provide supporting information.

My husband has a disabled bus pass and – because he cannot travel on the bus unsupervised – his pass also allows a carer to accompany him for free. We have had free travel in Avon and Somerset, Dorset, Yorkshire and Chester.

Helen, whose husband David was diagnosed with a brain tumour

Check whether you can get discounted entry to attractions

Lots of attractions give reductions for either a disabled person or their carer. Some need to see your PIP letter to apply the discount. Check their web pages before you go away. We got discounts at places like the Brighton Pavilion and Chester Zoo.”

Helen

Some attractions may need to see your PIP letter to apply the discount. Check their web pages before you go away.

Going abroad

Ask for assistance at the airport

Best tip of all (I think) is to always ask for special assistance. Even if it means a bit of unnecessary wheelchair action, it means you get to queue jump lots and board the plane faster.

Francesca, whose husband Brian was diagnosed with a brain tumour

Find out more information about the support that may be available when travelling abroad.

Take out travel insurance

Travel insurance for both of you may be more expensive, but it’s worth it for peace of mind.

Helen

At The Brain Tumour Charity we don’t recommend, and haven‘t vetted, individual travel insurance companies. However, from feedback gathered from those who’ve been affected by a brain tumour, we have produced the following list of companies who may be able to help:

  • Insurancewith (T: 02038 296 761, insurancewith.com)
  • Columbus Direct (T: 0800 0680 060, columbusdirect.com)
  • Flexicover (T: 0800 093 9495, flexicover.co.uk)
  • MIA (T: 01268 783 383, miatravelinsurance.co.uk)
  • All Clear (T: 01708 339295, allcleartravel.co.uk)
  • World First (T: 0845 908 0161, world-first.co.uk)
  • Co-op Travel (T: 0330 400 1626, co-opinsurance.co.uk/travel-insurance)
  • Money Super Market (compare medical travel insurances for pre-existing conditions, such as cancer, moneysupermarket.com/travel-insurance/pre-existing-medical-conditions)

Disclaimer: The Brain Tumour Charity provides the details of other organisations for information only. Inclusion on this webpage does not constitute a recommendation or endorsement.

I have always found MIA Medical Insurance abroad excellent.

Viv

Keep important items and information on you, such as extra medication and copies of important documents

Always have all your medication, plus either a letter from your GP listing your meds or your repeat prescription request sheet, in your hand luggage. Some countries won’t let you enter the country with some drugs unless you have authorisation from your doctor.

Helen

Remember: it’s also important to have important items on you when you’re travelling within the UK.

I make sure I have a full week’s worth of medicines with me at all times, so if Brian’s luggage gets lost we have things covered. Same thing taking copies of passports, tickets, etc., as we know how easily things get lost in our worlds.

Francesca

We took a travel ‘pack’ with all information in one place, which can easily be handed over to a medical professional in the event of an emergency. We found it really useful. It went with my husband wherever he went, especially at times he was not with me. We did need to use it – it helped when he was an emergency admission as I knew that I could just grab the pack and go. It was also useful when family took him away for a few days.” 

Nicola

Consider a package holiday or renting your own accommodation

Consider going on a package holiday rather than independently. That way, if you have a problem, you should be able to call on the travel company’s representative for help.”

Helen

We find renting a cottage or villa much easier than hotels as you can recreate their comfort zones at home while away. Set your own mealtimes, sleep times, dress code, etc.

Francesca

And finally…

Don’t forget to look after yourself!

When you’re away, plan rest periods into your day. An afternoon nap works wonders.

Helen
A woman feeling supported as she scrolls through the posts in one of The Brain Tumour Charity's Online Support Groups.

Join our community on Facebook

Our closed Facebook groups are a great place to connect with other people affected by a brain tumour and share your experiences.