We campaign on a range of issues that affect the brain tumour community. Find out more about our latest campaigns and how you can get involved.
Welfare & benefits
The findings of our Losing Myself report showed just how uncertain day to day finances are for many people affected by a brain tumour. Brain tumours are different to other cancers, as they affect the part of you that makes you who you are. Symptoms can be severe and life changing and a person affected may require constant care.
We challenge aspects of the system which can delay or frustrate access to benefits for someone living with a brain tumour. We also raise awareness of what life with a brain tumour is like to ensure that changes to the system do not have a negative impact.
Tasmin shares her story in our Losing Myself report. Tasmin is a single mother of four children, and is a midwife. She has struggled with work and finances since the onset of her brain tumour.
We want to see easy access to welfare and benefits for people affected by a brain tumour where appropriate and continued support from the Government to those most in need.
If you or someone you know has been through the assessment process for benefits following diagnosis of a brain tumour, we would like to hear from you. We are also keen to hear from those whose ability to work or return to work after treatment has been impacted. Drop us a line at email@example.com
The Pink Drink
Some people with a high grade glioma may be given a pink drink just before surgery (it's actually a drug called 5-ALA). It makes tumour cells glow under ultraviolet light, enabling more accurate removal of tumour tissue and less damage to surrounding healthy tissue. Not all those with a high grade glioma are suitable candidates for this drug, it is currently suitable for around half of all people.
Unfortunately, not all hospital trusts fund access to 5-ALA, meaning that in some areas of the UK availability is limited or non-existent. We don't think it's fair that access should be determined by where you live. Access should only be limited if it is not clinically appropriate. We are working with politicians, healthcare professionals and Trusts to change this.
We want to see 5-ALA made available where appropriate to people with a brain tumour.
Our research shows that around 3 in 4 people affected by a brain tumour lose their driving licence at some point or voluntarily relinquish it. The loss of a driving license can lead to a loss of independence or unemployment.
Vicky had to give up her driving license due to seizures caused by her brain tumour. Watch her video on losing her driving licence and the impact it had.
A negative experience of dealing with the Driver and Vehicle Licensing Agency (DVLA) can exacerbate feelings of hopelessness and despair for someone with a brain tumour. We work with the DVLA and healthcare professionals on issues around fitness to drive.
We want to see better communication and greater transparency from the DVLA around how fitness to drive decisions are made.
Health information (or data) about people diagnosed with a brain tumour is collected by NHS health and social care providers at the point of diagnosis and throughout treatment. This data is stored in a cancer registry (it includes data for people with both high and low grade brain tumours). This data can be used to drive improvements in the prevention of cancer, standards of cancer care and clinical outcomes and experience for patients.
We have identified a number of issues in relation to the collection, storage and use of health data that are obstacles to improving diagnosis, treatment and care for people with a brain tumour.
We want to see people affected by a brain tumour better informed about the use of their health data. We also want obstacles which place undue delays or limits on access to data for researchers removed from the NHS.
The UK's decision to leave the EU is likely to have an impact on scientific research in the UK and EU member states. The impact will be particularly acute for rarer cancers like brain tumours, which benefit from a critical mass of expertise and knowledge and a wider pool of patients for clinical trials across the EU.
We will be working with policy makers in the UK and in Europe to highlight these issues.
We want the UK Government to ensure that the UK medical research community is able to continue to participate in EU funding programs; that UK institutions in the science and research sector can continue to attract and recruit talent from EU member states; that an aligned and compatible regulatory framework remains in place.
The Department of Health has set up a Task and Finish Group (TFWG) to look at barriers to research into brain tumours. More Government money for research into brain tumours will have a limited impact unless certain, existing barriers in the research infrastructure are overcome.
We think that much more needs to be done to overcome these barriers. The Brain Tumour Charity were invited to join the TFWG and lead on discussions around biobanking and early diagnosis, two areas of work which we had already committed funding to in our research strategy A Cure Can't Wait.
We will continue to influence the final recommendations of the TFWG and work to overcome these and other barriers, including access to health data and increased training for subspecialisation in medical oncology.
We want to see Government support for the final recommendations of the task and finish group on brain tumour research.
HeadSmart is a multi-award winning, UK wide campaign based on research funded by The Brain Tumour Charity at The University of Nottingham. It aims to educate the public and healthcare professionals about the signs and symptoms of brain tumours in children and young people, to reduce diagnosis times. This will save lives and reduce long-term disabilities. Our goal is to reduce average diagnosis times to 4 weeks or less in line with NHS targets.
We will raise awareness of early diagnosis with healthcare professional and politicians. We will also work with NHS England to implement the England Cancer Strategy recommendation that “Public Health England and NHS England should evaluate data from the HeadSmart campaign to determine what factors influence late diagnosis of brain tumours in children and whether tailored initiatives would be appropriate.”
We want to see NHS England support the Cancer Strategy recommendation around HeadSmart. Read more about our HeadSmart campaign in more detail.
If you would like to know more about how you can support HeadSmart, get in touch.