We’re passionate about ensuring everyone affected by a brain tumour has access to the best treatment and care. Your responses to our Improving Brain Tumour Care surveys have helped us get a clearer picture of what’s working well and what can be improved. We’ve also been able to get a better understanding of any inequalities in access to treatment and care across the UK.
This data feeds into the Tessa Jowell Centre of Excellence assessments and help determine whether each neuroscience centre achieves excellence status or not. Our Support and Information team also use the gaps in care to direct how we grow our own services. For example, in response to the huge need for more emotional support we’re growing our free counselling service and Online Brain Tumour Support Groups.
These are the latest insights based on 825 experiences for adults diagnosed or treated between 31 Dec 2020 and 31 Dec 2022.
Where are the gaps and how are we planning to fill them?
Faster diagnoses and better support following a diagnosis
- 78% people are diagnosed within three months of first seeing a healthcare professional. For 1 in 10 people it takes over a year to get diagnosed.
- For those who sought help from their GP with their symptoms, 42% had to visit the GP three or more times to help them get a diagnosis.
- 74% said they went to A&E about their symptoms on the way to getting a diagnosis and 46% were first told they had some form of brain tumour by an A&E doctor not specialised in brain tumours.
- 17% people were first told about their diagnosis by phone or by letter, 23% were not told sensitively and 30% didn’t have a loved one with them when they were told
We’re helping to fill these gaps by:
- launching our Better Safe Than Tumour campaign to tell everyone about the signs and symptoms of brain tumours
- developing our Fighting for Faster Diagnosis report and pushing for faster and better diagnoses
- training healthcare professionals, for examples opticians and GPs, on how they can play a role in faster diagnoses
Improved communication with healthcare professionals
- 59% people need more help understanding their brain tumour and what to expect
- 46% people needed more help understanding their treatment
- 27% said their prognosis was not explained in a way they understood
- 36% were not given written information about their tumour type
- 32% were not given written information about their treatment
We’re helping to fill these gaps by:
- growing our Support and Information services with dedicated support for adults, children and families and young people
- supplying Information Packs to people when they’re newly diagnosed
More professional support and coordination of care
- 43% don’t have good access to a Clinical Nurse Specialist or key worker whom they could ask anything anytime
- 70% didn’t have a holistic assessment of their needs and a resulting plan which was working well
- 39% were not connected to a charity team
We’re helping to fill these gaps by:
- helping deliver the Tessa Jowell Centres of Excellence programme which helps neuroscience centres make the case for adequate resources
- designing and piloting the My Support Plan tool in BRIAN which helps you assess your needs and what might help and create a good support plan with your healthcare team.
- pushing for change through our policy and campaigning work
More support for significant unmet needs
- 84% did not have all the support they needed in one or more areas.
- 58% needed more help coping emotionally
- 57% needed more help managing their side effects and symptoms
- 49% people needed more help accessing the right treatment and support for them
- 32% needed more help maintaining their finances to live comfortably
We’re helping to fill these gaps by:
- growing our Online Brain Tumour Support Groups to help people share experiences and support
- doubling our own free counselling service
- expanding our free Money and Benefits Clinic with Citizens Advice
- investing in our Support and Information services
New treatments and more patient participation in research
- 45% people needed more help exploring other options for their treatment outside of the limited standard of care
- 43% considered or used one or more alternative treatments alongside or instead of the standard of care prescribed by clinicians
- 53% participated in research in one or more ways by donating data or tissue or genetic information or participating in clinical trials
- 37% reported having biomarker testing of their tumour for specific genetic information
- Only 12% respondents participated in clinical trials
We’re helping to fill these gaps by:
- pledging to fund £50m of new research directly and attract £150m more funding from others by 2030
- developing our BRIAN app to help people track their own progress to improve their care, share their data and contribute to research
- committing to create a virtual biotech to fast-track the development of new treatments
Better experiences during treatment so people feel confident recommending their treatment teams
- Overall 55% strongly recommend their treatment team (rating them 9 or 10), but 25% could not recommend their treatment team (rating them 0-6 out of 10).
- The experience is best for radiotherapy and chemotherapy – 67% Positive and 18% Negative – and worst for diagnosis – 48% Positive 33% Negative
We’re helping to fill these gaps by:
- feeding back to neuroscience centres about the experiences of the people and families they support and supporting them to improve
- pledging to find and eliminate all the inequalities in brain tumour treatment, care and support
Want to help?
You can help by:
- taking part in our Improving Brain Tumour Care surveys and telling us about your latest experience of healthcare
- joining our Involvement Network to help us understand the gaps and design solutions to fill them
- volunteering your time and expertise to help deliver change and close those gaps