When talking about health conditions, it is understandable that experts such as clinicians, researchers and health charities focus on the medical detail such as scans, treatments or clinical trials. Whilst these are of the utmost importance, they don’t necessarily reflect just how devastating brain tumours are for patients’ lived-experience.

The All-Party Parliamentary Group on Brain Tumours delved into the wider effects that brain tumours have on people's’ lives as part of a 2018 Inquiry which revealed how debilitating they can be. Changes in cognition, behaviour and personality have various consequences that are not simply medical, but also social and financial.

Brain Tumour Research was therefore pleased that NHS England is currently designing methods to track how cancer affects people beyond their medical care. This new ‘quality of life’ metric, which is the first of its kind, will use questionnaires to ask about patients’ daily lives.

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This new system has been piloted for breast, colorectal and prostate cancers at a selection of hospitals across the country. Brain Tumour Research is now working with NHS England as part of a focus group, alongside other members of the brain tumour community, to help tailor the system for those diagnosed with this devastating disease.

We expect this will have two main benefits for brain tumour patients and their families.

Firstly, the data collected from patients will help drive improvements in care provision which includes personalised plans for people with cancer outlining not only their physical needs but also other support they may need, such as help at home or financial advice.

Secondly, by measuring just how detrimental brain tumours can be to a patient’s quality of life, it will become clear to NHS England and the Government just how much brain tumours are neglected in comparison with other cancers, both in terms of available treatments and research funding.

We are pleased to be involved in shaping this vital work and will keep you updated with any developments.

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