Recently released brain tumour data shows that 10% of people with a non-malignant brain tumour will die within the first year of being diagnosed.
Despite this, these tumours are referred to as benign, there is little public understanding of the impact that these tumours have, very little information, and supportive services are not stratified appropriately for those with a non-malignant brain tumour.
Low grade brain tumours: the impact
Helen Bulbeck, Director of Services and Policy at brainstrust highlights the challenges that face people living with a low grade brain tumour:
“People living with a low grade brain tumour, and their loved ones, face a multitude of challenges. These include varying survivorship (now evidenced by government data); uncertainty and anxiety about the future, compounded by regular scans and the fear that comes with those; high frequency of disabling complications; and high severity of disabling complications. We also know that people are concerned about vitality, their identity and role, limitations and emotional well-being. Practical support can help here, but it is not easy to find and there is not enough capacity and understanding to make meaningful population-wide change”
To compound this further, there is a social issue at play wherein people with a non-malignant brain tumour and their caregivers do not have parity of voice with those diagnosed with a malignancy.
The story behind the data
Report 1: Non-malignant brain tumours (NMBTs)
brainstrust has published a report that explores and explains the data. It also shines a spotlight on the experiences that people are having in the face of a low grade brain tumour diagnosis, and makes recommendations on what needs to be done for people with a non-malignant brain tumour to have a better life with the disease.
These recommendations include:
- The word ‘benign’ should not be used to describe these brain tumours
- There is a need for better public understanding, resources and information to support people with a low grade brain tumour
- More support is needed and it needs to be better structured
- Support needs to be relevant, available at the right time
- There needs to be parity of voice between non-malignant and malignant brain tumour patients and their carers.
Stories behind the data
Claire was diagnosed with a grapefruit-sized meningioma following constant migraines, trembling hands and trouble finding words. Her dreams for the future are now different, but no less ambitious as she comes to terms with her new normal.
Following prompt diagnosis in early 2017, Natasha is having to focus on the short term future with variable seizures and the medication that comes alongside, as well as weighing up the pros and cons of brain surgery. The ‘what if’ feeling can be overbearing and she is working hard to overcome this. Every day questions like ‘How are you?’ or ‘What’s new?’ are hard to handle.
What is brainstrust’s role, and how can you help?
Will Jones, brainstrust’s Chief Executive, paints a picture of what lies ahead for the charity in the face of this work.
“Our job now is to ensure that this data, and the recommendations that come from it remain in the spotlight. We will push for those that can make the changes we need to make them, and quickly. We have already appraised how we deliver our service and identified collaborations so that we can provide the best support we can for people with a low grade brain tumour, and we would ask everyone else that is here for this group of people to do the same.
We will be making sure the voice of people with a low grade brain tumour is head with parity, and at the highest levels we can. We will do this through our collaborations with the Tessa Jowell Brain Cancer Misson, Public Health England, Children With Cancer UK, Macmillan Cancer Support, Cancer Research UK, NICE and any others who have a shared aim to make life better for those with a brain tumour.
You may have heard about the ‘Wear Grey’ campaign, that has raised funds and awareness for brainstrust’s work over the years. Moving forward, we are dedicating this annual event to raising awareness of the huge, yet invisible impact of a brain tumour diagnosis. Please do support is in this work – contact us on firstname.lastname@example.org or 01983 292 405 to get involved.”
And of course, we are here for you too. If you have concerns about life with a brain tumour, high grade, or low grade, please feel free to get in touch on 01983 292405.
The Get Data Out project, Cancer Outcomes Statistics for Public (COSP) use
The data behind this report has come from Public Health England’s National Cancer Registration and Analysis Service (NCRAS) and is a direct result of the ‘Get Data Out’ project.
This project provides anonymised population level brain tumour data for public use in the form of standard output tables, accessible here: cancerdata.nhs.uk/standardoutput
The project is no longer in pilot stage, and has now also released data on pancreatic, testicular and ovarian cancer.