What we learnt from The Brain Tumour Charity

On Tuesday 27th January, we were joined by Molly Hughes and Shona Floyd from The Brain Tumour Charity for an online workshop.

The Brain Tumour Charity is the leading charity dedicated to brain tumours, aiming to double the rate of survival. They support an average of 11,000 individuals, 24,000 through peer support, and over 1.3 million online. Teams include Adult Support, Young Adults, and Children & Families teams.

They offer free professional counselling to anyone diagnosed with a brain tumour, and to their loved ones. This is available to anyone in the UK over the age of 18 and held online or over the phone.

Facts about brain tumours:

• They are the biggest cancer killer of those under the age of 40
• Around 12,000 people are diagnosed each year, with roughly 500 of these being children and teenagers
• Over 5,300 people lose their life within a year of diagnosis, with a 5 year survival rate of only 12%
• Brain tumours reduce life expectancy by an average of 27 years

Symptoms can vary depending on the type of tumour and the age of the person. Common symptoms in all ages are recurrent headaches, problems with balance, nausea/ vomiting, seizures, fatigue, and problems with vision.

The Brain Tumour Charity are passionate about understanding the difficulties faced by the community and are actively campaigning for change. They found that between 2022 and 2024, 41% of people diagnosed had to visit their GP three times or more. 37% not told sensitively about their life-changing news. 85% of people felt that their needs were not met, such as emotional support, help managing symptoms/ side effects, and not being made aware of rehabilitation or charity support.

Challenges faced by brain tumour patients

Challenges faced by patients will be different based on their age and the location/ type of tumour. The most common challenges are:

• Personality changes- These affect 1 in 3 people, typically in patients who have tumours in the frontal lobe. They can cause confusion and forgetfulness, mood swings, aggression, depression, and difficulty in planning and organising simple tasks.
• Problems with communication- This affects 1 in 5 people. It is usually in those with tumours in the frontal lobe, temporal lobe, or in the left hemisphere. They may affect speech and language production, or cause patients to struggle with understanding.
• Seizures- Around 2 in 3 people diagnosed will have a least one seizure. Seizures are more common in patients with slow growing tumours, or with tumours located in the cerebrum or meninges.

Whilst there is currently no cure, strides have been made in improving quality of life for people who are diagnosed.