Akudo Amadiegwu, Lecturer in Social Work, discusses the importance of a new funding initiative into research and support for people with brain tumours.

On 14 May 2024, the National Institute for Health and Care Research (NIHR) in partnership with the Tessa Jowell Brain Cancer Mission, jointly announced new funding initiatives as part of a £40m investment into the research and support for people suffering from brain tumours.

I am particularly pleased about the funding for research in this area as it would no doubt have a positive effect on the care and support for people affected by this debilitating and sometimes life-limiting condition.  I am also hoping for more funding in social work, social care, and support for people affected by this condition.

Brain tumours can be described as abnormal, uncontrollable growth or multiplication of cells in the brain which can be categorised as malignant (cancerous) and benign (non-cancerous) brain tumours. Benign brain tumours are known as low-grade because they grow slowly, and are less likely to spread or return after treatment. Malignant tumours are high grade and either start in the brain or spread into the brain from other parts of the body and are more likely to grow back after treatment.

Everyone who has a brain tumour has a brain injury. They all have neurocognitive deficits. X had a grade 2 tumour…She functions but has memory deficits…she can’t navigate places. everybody will have some form of deficit… some hidden. And will never ever go back to how they were’.

(Helen Bulbeck, Braintrust)

There are over 130 different types of brain tumours (Cancer Research UK 2020). In the UK, 12,000 people are diagnosed with a brain tumour annually with about 50% being cancerous (NHS 2023). Generally, more than 40% of people with a cancerous (malignant) brain tumour in England survive their cancer for 1 year or more and almost 15% survive their cancer for 5 years or more (Cancer Research UK).

Different types of non-cancerous brain tumours are related to the type of brain cells affected. Examples are Pituitary adenomas (tumours of the pituitary gland), meningiomas (tumours of the membranes that cover the brain), and craniopharyngiomas, tumours near the base of the brain, often diagnosed in children, teenagers and young adults. 

I worked with a young person with craniopharyngioma as a student social worker on placement. Craniopharyngiomas are rare brain tumours, in adults, with less than 1/100 occurrences, represented in 5-10% of childhood brain tumour cases affecting 30 children and teenagers in the UK every year. The rarity of occurrence does not preclude social workers or students, or even schools from supporting people with this condition as I certainly found in my experience. The Equality Act 2010 places a duty on schools to make ‘reasonable adjustments’ for students with disability. It is therefore imperative that professionals and students have sufficient knowledge to support and facilitate the making of ‘reasonable adjustments’.  

Most people with craniopharyngioma will have surgery and require support post-surgery with long-lasting side effects due to the nature of the condition which can be situated near the optic nerve and hypothalamus. The young person had an optic nerve damaged following three brain surgeries and suffered from epileptic seizures. However, seeing beyond the medical issues is the role of the social worker.  I found him to be the most polite, intelligent young person, good at Maths and Computer Science.  

The social worker promotes the right of participation by empowering and being supportive, serving as an advocate, providing access to services and considering other social and environmental factors that may serve as contributory factors to the disablism. Support can be either to improve functionality, right of participation or quality of life, even at the end of life.  There is a need for increased social work research and training in this area of practice as this ultimately, would improve the support for people with brain tumours.

Akudo Amadiegwu is Lecturer in Social Work in the School of Allied and Public Health Professions.