Brain Tumour Help and Advice
Find brain tumour help, practical advice and trusted support for patients, families and carers, including guidance on symptoms information, fatigue, travel, benefits and next steps.
If you require direct advice or help, you can send us a message via our contact page or call us on 07852 6543210
Living with a brain tumour, or supporting someone who is, can bring a wide range of questions and challenges. People often need more than medical information alone, they need help with everyday life, emotional support, travel, driving, benefits, fatigue, sensory changes, and knowing what to do next.
This page brings together practical brain tumour help and advice for patients, families and carers. It is designed as a starting point, helping you find the right support more quickly and connect with the pages that go into more detail on symptoms, after-effects, support groups and practical next steps.
If you are looking for brain tumour help, this page is a good place to start. Below, you will find practical advice, answers to common questions, and links to trusted support for patients, families and carers. Whether you need help with travel, benefits, fatigue, support groups or understanding what to do next, we are here to point you in the right direction.
If you are trying to make sense of symptoms, diagnosis terms or what certain changes may mean, these answers can help you find the right starting point.
Although you can contact us for brain tumour help, advice or support, always get in touch with a GP in the first instance if you have any concerns. For further information, you can use trusted medical sources (NHS) to check symptoms. Our main role is to support families affected by brain tumours. If you’re worried, speak to your GP or care team directly.
They’re medical terms your team uses to plan treatment. For plain-English explanations, see our Brain Tumour Types guide and ask your clinician about your specific case.
Get in touch with your consultant, clinical nurse specialist or GP promptly if you notice new or worsening symptoms. This could include, but is not limited to, severe or different headaches, new or more frequent seizures, persistent vomiting, fever or signs of infection, confusion or sudden memory problems, new weakness, numbness or balance issues, changes to speech or vision, severe dizziness, chest pain, breathlessness, or troubling side-effects after a medication change. Also contact them if fatigue is stopping you from doing everyday tasks, if you’re unsure about driving, work, travel (including flying), or if you need help with forms and adjustments. If symptoms are severe or sudden (for example, a seizure lasting more than five minutes, chest pain, sudden weakness on one side, or a severe headache “like a thunderclap”), call 999 or go to A&E. This page can’t diagnose; your team can advise on next steps and timing.
Practical questions often come quickly after diagnosis. Travel, driving, Blue Badges, benefits and everyday admin can all feel overwhelming, especially alongside treatment or fatigue.
If you are affected by, or are living with, a brain tumour or brain cancer, you may be entitled to certain financial benefits.
The benefits you are entitled to will depend on your circumstances. You may be able to claim more than one type of benefit e.g. Personal Independence Payment (PIP) and Employment and Support Allowance (ESA).
For more information about Financial Support please read the article below.
If you are diagnosed with a Brain Tumour you must inform the DVLA immediately.
For a full list of health conditions that you must disclose please read this article.
For more information please read the following articles below:
A Blue Badge gives you certain on-street parking concessions. If you’re a Blue Badge holder travelling either as a driver or passenger, you can park for free in disabled parking bays and may be exempt from other parking restrictions. You can use your Blue Badge with any car, including taxis. Concessions usually include:
For more information about getting a Blue Badge read this article.
You can’t use your Blue Badge everywhere. Check where you can park on Gov.uk.
The age you qualify for free bus passes is changing in line with national changes to the state pension age.
To find out when you can get a concessionary travel pass and how you can apply visit Nexus: Concessionary travel for older people
If you live in Tyne and Wear, you can travel on buses for free if your disability qualifies you for a concessionary travel pass.
To see if you could make your journeys cost free and to apply for a pass visit Nexus: Concessionary travel for disabled adults.
A Metro Gold card will give you a year’s travel on the Metro, Shields Ferry and Northern Rail between Sunderland and Newcastle for £12 if you live in Tyne and Wear.
You’ll need to have a concessionary travel pass and you will be able to travel at the same times as your pass is valid.
For more information see Nexus: Metro Gold Card
If you need to take someone with you for bus travel, they can travel for free if you have a Companion card.
A Companion card is the same as a concessionary travel pass and it is in your name.
It carries an additional symbol on it that tells drivers and inspectors that whoever is with you for a particular journey does not have to pay a fare providing the trip is made in the hours that it applies.
This may be useful for unpaid carers.
You are eligible for a Companion card if you receive any of the following benefits:
To find out more and apply, visit Nexus: Companion Card
The NHS will refund you reasonable travel costs for health appointments if you meet certain financial and health criteria. Fares for you carer may also be met in the right circumstances.
For more information, visit NHS: Help with travel costs
Always contact your clinical team before making any decisions as your ability to travel by air depends on your diagnosis, recent treatment, and symptoms. Cabin pressure, altitude and long sitting can increase risks to your health (headaches, ear pressure, seizures, blood clots, fatigue). Always check with your clinical team first. They can advise timing, medications, and whether you need a “fit-to-fly” note.
It is recommended to delay travel and seek advice if you have new/worsening headaches, weakness, confusion, recent seizures, infection/fever, or if you’ve just had a medication change.
Brain tumours and treatment can affect energy, concentration, speech, movement and sensitivity to light or noise. These questions explain some of the most common after-effects and where to find more support.
Fatigue is more than feeling tired. It’s a persistent, overwhelming lack of energy that isn’t fixed by sleep and can be physical, mental, or both. It’s common after a brain tumour and its treatments (surgery, radiotherapy, chemotherapy) and can be made worse by pain, poor sleep, seizures, medicines, low mood, or stress.
See our Dealing with fatigue guide
Quick tips that help
This can be sensory overload. After a brain tumour or treatment, the brain can struggle to filter and prioritise input from light, sound, crowds or screens. This “overload” feels like everything is too bright, too loud, and too fast. This often causes headaches, fatigue, irritability, or shutdown. Small changes (lighting, headphones, quiet breaks) often help. See more of our practical strategies here.
Brain tumours affect whole families, not just the person diagnosed. These answers are here to help carers, partners, parents and loved ones find support too.
Offer practical help, listen without pressure, help with appointments or paperwork, and make space for rest and recovery. Small, steady support can make a real difference.
Families can find support through charities, support groups, hospital teams and trusted advice pages. The Three Tumours also provides practical guidance and signposting.
You can also explore our Brain Tumour Support Groups and Brain Tumour Support for Families pages for more help.
Yes, support groups can offer emotional support, practical advice and connection for both patients and carers. They can help people feel understood and less alone.
The right next step depends on what kind of help you need. If you are looking for practical advice, start with our Help & Advice topics. If you are coping with symptoms, fatigue or sensory changes, explore our After Effects pages. If you or your family need emotional support, our Brain Tumour Support Groups page is a good place to start. You can also contact us if you need help finding the right support.
