The two-hour session was organised by the All-Party Parliamentary Group on Brain Tumours as part of their inquiry into the social and economic impact of brain tumour. Alongside Headway, evidence was taken from representatives of Cancer Research UK, CLIC Sargent and Marie Curie.
Jo Plant, Director of Fundraising, said:
“It might seem unusual to have someone in my role speaking about brain tumour. But sadly I and my family have first-hand experience. In the spring of 2016 my dearly loved husband Carlton was diagnosed with a glioblastoma grade 4 brain tumour, he died just before Christmas that same year.
“That 256 day journey from diagnosis to death was a series of battles on so many fronts, and having to fight for care and support took time away from Carlton that can never be replaced.
“I count myself lucky because working at Headway gave me insight and information that could have been much harder to find, and because my colleagues were incredibly supportive.
"But we know that this is not the case for so many people living with or after brain tumour. It was a privilege to be able to speak to the inquiry about my personal experience and on behalf of Headway.”
Dr Clare Mills, Public Affairs Manager, added:
“Through our network of 127 groups and branches across the UK, we support several thousand people with acquired brain injury. Around 8% of them have been affected by brain tumour.
“Brain tumour causes brain injury in three ways. The tumour itself, whether malignant or benign, takes up space and presses on the brain and nerves, and can infiltrate and damage brain cells. During diagnosis and treatment, particularly with biopsy, surgery and radiosurgery, further damage occurs. It may be preferable to the damage caused by not treating the tumour but it leaves its mark. There are also unintended consequences of tumour and treatment which affect many people including stoke, haemorrhage and seizures.
“We spoke to the inquiry about issues raised with us including the length of time it can take to obtain a clear diagnosis and treatment plan and the lengthy delays for funding assessments by social services, which can prevent people from accessing timely rehabilitation.
“It was also good to discuss our Right First Time campaign for prompt and accurate decisions on disability benefits. Hidden disabilities and conditions such as brain tumour can be harder for assessors to recognise and understand and this has to change.”
Headway has previously submitted written evidence, and we have added to this with Jo Plant’s account of her family’s experience and further evidence. You can download this information in the Related resources section below.
Headway is grateful to colleagues at Brain Tumour Research, Derek Thomas MP and the other members of the All-Party Parliamentary Group for holding this inquiry. The findings are due to be published in the autumn and we will bring you a further update then.Back