The second Wales Cancer Patient Experience survey gives an insight into the experience of 6,500 cancer patients (including 37 with brain or CNS tumours) across Wales in 2016.
Unfortunately, the survey highlighted the poor experience that brain and CNS tumour patients continue to face across the care pathway in Wales, from diagnosis to treatment and support after treatment.
More than a third of patients were diagnosed with a brain tumour by an emergency admission to hospital in A&E, which is significantly higher than any other cancer type.
This highlights the vital importance of awareness around brain tumour signs and symptoms to drive earlier diagnosis and ensure that the disease is picked up more quickly.
Challenges with coordinating the care of brain tumour patients was a major theme of the report’s findings. Whilst the majority of patients were given the name of a key worker (86%), just over half (56%) said that they found it easy to contact them and more than a quarter said that they provided answers to questions either all or most of the time.
In addition, only 13% were offered a written care plan, and 61% said that different healthcare professionals worked well together to give the best possible care, which was the lowest figure for any cancer type.
Many people affected by brain tumours face disabilities that have an impact on their ability to work and function, and require additional financial support as a result of their condition. Therefore, we were disappointed to see that less than half of brain and CNS patients were given information by staff of financial help/benefits they may be entitled to (47%).
There were some more positive results in the survey, with 100% of patients saying they had options explained before treatment started, and 86% of patients said that side-effects of treatment had been explained in an understandable way.
Overall the survey highlights the urgent need to improve the experience of brain and CNS tumour patients in Wales, particularly given the ambitions set out in the Welsh Government’s Cancer Delivery Plan that was published last year.
We are working actively to influence the implementation of the Cancer Delivery Plan through our participation in the Diagnosing Cancer Earlier Programme, which is looking at ways to increase cancer survival in Wales by increasing the number of cancers diagnosed at an earlier stage.
Your voice matters
By campaigning with The Brain Tumour Charity, you can help ensure the issues which affect the brain tumour community remain a political priority.