If I met the Prime Minster...
As a survivor of a childhood brain tumour, I am concerned about the lack of attention that is paid to quality of life following (or during if palliative) treatment. This makes no sense to me because many of the effects of treatment have been recognized for some time. I feel strongly that this needs to be addressed by someone who could really make a difference.
Coffee with the prime minister was suggested but I soon realised I have so much to say it would have to, at least, be lunch…
I would be interested to know what the prime minister understands about childhood brain tumours.
From my perspective as a ‘survivor’ and having studied psychology (BSc) and Neuroscience (MSc) there are numerous issues that need to be understood and addressed.
Firstly, the term ‘childhood brain tumour’ refers to a multitude of different tumours that can occur in the brains of young people. They can be differentiated by many factors, but all will have an impact on development. Having a brain tumour means that the brain will be injured and this occurs from the moment the tumour begins to grow. Survival statistics have improved over time but little attention has been paid to the quality of that survival. More attention goes to survival and cure numbers. Those who survive, live with the life-long consequences of their treatment, which is toxic, and brain injury.
This issue will not go away as, over time, more young people will survive a childhood brain tumour.
To give an example of my own experiences: I was diagnosed at the age of 9 with a malignant brain tumour. After surgery, I had four cycles of chemotherapy and then radiotherapy to my whole head and spine. Survival statistics my parents received were not on my side. Yet, 30 years later, I am still alive, disabled and currently unemployed. I live with the effects of the brain tumour and treatment today. Further, as an adult I have had two TIAs (‘mini-strokes’) and several skin cancers, likely caused by the treatment I received.
I am repeatedly told that I don’t look like I had a brain tumour or that people can’t tell. This really highlights the hidden nature of the effects of childhood brain tumours (once ‘cured’). I have worked incredibly hard to achieve in life and have three degrees but in some ways, this has acted against me as it seems to strengthen the belief, in some, that I don’t need support or am not disabled. Conversely, I can’t out compete those who haven’t had a brain tumour when seeking work at the level of my qualifications.
I spent many years searching for some sense of guidance as an adult but found it difficult as the effects of my brain tumour can fall into several categories. None of these directly address survival after a childhood brain tumour. I feel that survivors of childhood brain tumours can easily be ‘drowned out’ by larger groups either because members don’t have brain injury or have an already recognized condition. I’ll take for example the all-party parliamentary groups, (1) as the prime minister will be aware of these.
Acquired brain injury (ABI): all survivors of a brain tumour will have acquired brain injury but will also experience the effects of treatment for their brain tumour and, for children, this will impact early brain development. ABI covers injury of all types from infancy to late adulthood.
Catherine Sutton shares what she would discuss, if she met Rishi Sunak the Prime Minister for lunch.
Image credit: Simon Walker / No 10 Downing Street (Open Government Licence v3.0)
Childhood, teenagers and young adults with cancer: Not all brain tumours are cancers (although mine was) and all survivors of childhood brain tumours will have brain injury which the majority of other cancer survivors will not.
Brain tumours: this covers all brain tumours, adult and child. They are different in origin and impact development, independence and outcomes differently.
To really change the future for survivors like myself, the focus needs to be specifically on childhood brain tumours.
The starting point is to address this as serious issue, to examine what is needed and where the gaps are at a national level. I would ask the prime minister to allocate funds to this and speak to survivors and families, not only those at the acute end of treatment but also older survivors who have a lived experience. Recently, there was the ABI strategy call for evidence (2), could something similar be considered specifically for survivors of childhood brain tumours?
I speak as one survivor but there are many others who could tell similar but very individual stories.
One of the major difficulties I have found is poor understanding of the complex issues I live with and how these impact on a day-to-day basis. This can lead to assumptions, inadequate support and poorly conceived advice (even from professionals). I think this could be improved by introducing, early in education, essential brain development and vulnerability of the young brain to injury. Also, shifting society’s focus from cure and survival, to quality of life and quality of survival. Informing society that surviving a brain tumour also comes at a cost.
Attention needs to be paid to rehabilitation services for children diagnosed with a brain tumour. These are not always easy to access and many children will miss out at vital developmental stages as a result. Rehabilitation services should be available as early as possible in a young person’s recovery journey and well-coordinated to cover all needs of the young survivor. Discussions should also take place regarding transitions from child to adult services.
Education should also be considered an important part of rehabilitation and interventions should be delivered as early as possible. I would ask the prime minister to make an effort to ensure that the EHCP application process is easier to access and quicker to implement. Don’t allow education establishments to ignore sections of an EHCP. Beyond compulsory education, where an EHCP may no longer be valid, due to age or circumstances, disability services should be aware of the effects of brain injury, neurodiversity and hidden disability and have facilities to make relevant adjustments.
I feel that access to employment needs to be addressed as an important opportunity to develop skills, independence and confidence for survivors. I am aware that there are more opportunities for apprenticeships and support for disabled young people to get into work than when I was younger but I do question how well these really relate to the ‘real world’. I don’t know the answer but I do know there are loop holes that employers can use. I would suggest that employers be required to provide feedback to survivors (and disabled applicants generally). I wonder if employers are concerned because of lack of understanding. Training and support for employers and employment advisors should be put in place.
I would really hope that by this point, I have convinced the prime minister to take action to improve outcomes for young people who have brain tumours in childhood. If not, I have to ask: why are so many resources and funds allocated to saving our lives?
1 Register of all party parliamentary groups. Published 20 September 2023 https://publications.parliament.uk/pa/cm/cmallparty/230920/register-230920.pdf
2 https://www.gov.uk/government/calls-for-evidence/acquired-brain-injury-call-for-evidence