The findings from the 2019 National Cancer Patient Experience Survey have been published and, disappointingly, reveal that there has been no overall improvement to the diagnosis and care experience of those with a high-grade brain tumour.
While the results indicate improvement in a couple of areas for those diagnosed with brain cancer, including care coordination, our community’s experience lags significantly behind all other cancers.
The Brain Tumour Charity has long recognised the significant shortcomings of the NCPES, which only surveyed 281 people with a high grade brain tumour. We’re now calling for better assessment of our community’s experience and also a more explicit focus on how this experience needs to improved.
It’s not acceptable that people aren’t diagnosed quickly enough, or given the information they need at diagnosis to make informed decisions about their options. We should not see huge disparities in treatment and care, depending on where you live.
That’s why we’ve made it our mission to embed a national ‘excellence standard’ to ensure that every person diagnosed with a brain tumour gets the best treatment and support.
To help drive this forward, last year we launched BRIAN - our pioneering app for those affected by a brain tumour. BRIAN gives people the information they need to make critical decisions at their fingertips, and helps our community contribute vital patient data to research. We are also supporting the Tessa Jowell Centres of Excellence, which will ensure that clinical best practice is given as standard.
Catherine Fraher, Director of Digital Health and Services, said “A brain tumour diagnosis is one of the most devastating diagnoses you can receive. That’s why it’s so important that the information and care given has to be of the highest standard, consistently.
“We have an active programme of work that will transform the experience of patients – we’re enabling better centres of excellence, improving best practice nationally, and ensuring every patient has the support they need, when they need it.
“We will also work with NCPES to improve their assessment of people’s experience – it’s currently not diverse or large enough for us to gain an accurate understanding of our community’s needs.