General supportive care

A brain tumour diagnosis brings complex challenges. But there are things that can be done to ensure that people live well with a brain tumour. The links listed below give access to information specifically for people living with a brain tumour and the additional nuance that this brings.

Fatigue - Fatigue is one of the most frequent and distressing problems described. Signpost people here who want to understand fatigue and build a toolkit to manage it.

• Braintrust - fatigue
• The Brain Tumour Charity- - fatigue and brain tumours

Exercise and rest - Exercise improves strength, fitness, mood and general wellbeing. These links access information specifically for brain tumour patients to add exercise and rest into their life safely.These links will allow you to access information specifically for brain tumour patients to find exercise tips, hints in plans to allow you to add exercise and rest into your life safely.

• Braintrust – Exercise
• The Brain Tumour Charity – Benefits of Exercise

Scanxiety – fear and nerves around both the scan and the results – is experienced by many. 

This link shares information about coping with scanxiety and how coaching helps manage it.

• Braintrust - Scanxiety

Behaviour and personality change (BPC) - BPC is challenging for everyone but there are ways to recognise and manage it.

Signpost these links if people want to understand brain tumour related BPC and how to manage it.

• Braintrust – Managing behavious and personality change
• The Brain Tumour Charity - Brain tumour personality changes

 Managing epilepsy and seizures - A wealth of information and extra support on these links.

• Braintrust – Epilepsy
• The Brain Tumour – Brain tumour seizure and epilepsy

Counselling - Use these links to help people access counselling.

• Braintrust – Counselling support for brain tumour patients and their caregivers
• The Brain Tumour Charity – Free counselling

Hypnotherapy - Hypnotherapy is useful in improving well-being in the following areas:

• Anxiety and stress
• Diet and lifestyle
• Resilience and self esteem
• Pre and post-operative care
• Pain management
• Reduction in side effects from treatments.
• Braintrust – Hypnotherapy for brain tumour patients and their caregivers

Mindfulness - The following link explains how to practice mindfulness and find ways find a sanctuary.

• Braintrust - Mindfulness

Survivorship - This link outlines support relevant to brain cancer survivorship.

• Braintrust - Survivorship

Acceptance - Acceptance helps to make peace with the difficulties that come with life and what is beyond control, whilst at the same time committing to action that will improve quality of life.

This link develops understanding about acceptance and how to achieve it.

• Braintrust – Accepting a brain tumour

Coaching - Patients often ask for counselling when coaching is a more appropriate intervention. This link explains what coaching is and how it helps, as well as providing a link to access bespoke one to one coaching.

• Braintrust - Coaching

Feel less alone - Peer support and online events to reduce isolation.

• Braintrust – Be less alone
• Braintrust – Peer support for people affected by brain tumour
• Braintrust – the brain cancer people
• The Brain Tumour Charity – Support in your local area

When diagnosed with a brain tumour people become a ‘patient’ or a ‘caregiver’. They feel uncertain and out of control so that making good decisions about what next becomes instantly more difficult.

The links here support patients and their caregivers to regain control and support decision making about all aspects of their brain tumour experience, based on evidenced and reliable information.

Second opinions – It is a right to have a second opinion but not everyone wants to exercise this right. These links share information about the implications of seeking a second opinion and how to seek one.

• Braintrust – Second opinions
• Braintrust – How to get a second opinion
• The Brain Tumour Charity – Getting a second opinion

Peer support – Peer support reduces feelings of isolation, fear of the unknown and helps to make sense of what is happening.

• Braintrust – Peer support

Working effectively with your clinical team – These links enable patients to have more focused consultations with their clinical team.

• Braintrust – working effectively with your team
• Braintrust – patient guides
• Braintrust – How to hold a difficult conversation

Being informed – Having access to reliable, trustworthy information reduces uncertainty and fear and helps with decision making. These resources have been produced with leading clinicians and have passed the independently assessed quality mark for trusted health information.

• Braintrust – Navigating your pathway
• Braintrust – Tumour specific support

Taking control – Know Hows share accessible information quickly and succinctly. They cover a range of topics relevant to the brain tumour community, such as driving, cannabinoids and scanxiety. 

• Braintrust – Brain tumour know hows

What to expect if you are diagnosed with a suspected brain tumour – Information about what happens next.

• Braintrust – What to expect

End of life care – These resources cover all aspects of what dying with a brain tumour entails: information on good end-of-life care, how to achieve it, who can help and how to ensure that the right decisions are made.

• Braintrust – end of life care
• Braintrust – Brain tumour hub
• The Brain Tumour Charity – Preparing end life

Helping myself - Meeting others online and attending workshops helps reduce isolation and increases resilience.  

• Braintrust – The brain cancer people

Just knowing where to go, who to ask, or what to click on can help with a sense of owning a problem and giving back control. This information enables people to live their life better with a brain tumour.

Travelling - Signposting help with travel options for day-to-day life and for hospital appointments, and information about travel insurance.

• Braintrust – Travelling
• Braintrust – Brain tumour hub
• The Brain Tumour Charity – Travelling and brain tumours

Money matters - Links about financial support and how to lessen the impact of money worries.

• Braintrust – Money matters
• The Brain Tumour charity - Benefits

Know Hows – Quick guides that give key facts about important topics relevant to brain tumours.

• Braintrust – Know Hows

Work – Signposting to support decisions about work and access to work.

• Braintrust – Access to work
• The Brain Tumour Charity – Employment and brain tumours

Practical resources – Resources are designed to build resilience and resourcefulness and help navigate the brain tumour pathway.

• Braintrust – Downloads and resources

Glossary - A structured glossary of words and terms that may need explanation.

• Braintrust - Glossary