On May 1, The Brain Tumour Charity held the first ever roundtable on brain tumours in Wales, bringing together a wide range of stakeholders within the brain tumour community.
The event, hosted at the Welsh Assembly and sponsored by Dawn Bowden, Assembly Member for Merthyr Tydfil and Rhymney, was a chance for healthcare professionals and those personally affected to get together and discuss what issues are at play within the Welsh health system for people living with a brain tumour.
Were we joined by neurosurgeons, neuro-oncologists, neuropathologists, clinical nurse specialists and speech & language therapists, as well as patient and carer representatives too. This made it a great opportunity for all sides of the brain tumour community to voice their opinion on what needs to be achieved to improve patient outcomes in Wales.
Our patient and carer representatives’ experiences were varied and moving, whilst the healthcare professionals detailed what needed to be done to help alleviate pressure on patient services.
What were the emerging themes?
Although participants shared mixed experiences within their personal stories, there were three unique and emerging themes running throughout the discussion.
Firstly, both patients and carers reported a lack of coordination along their care pathway. Patients were being left frustrated with what they were being told and were often provided with contradicting information from different healthcare professionals.
After a brain tumour diagnosis, those affected need to be reassured with clear and concise information but too often they were left feeling confused or uninformed.
Secondly, there was a strong consensus across the board for introducing conversations about palliative care earlier on in the pathway. Palliative care focuses on providing relief from the symptoms, pain and stress of a serious illness, and aims to provide a more positive experience for patients.
Unfortunately, end of life and palliative care are often conflated, meaning patients are denied the opportunity to engage in conversations over the appropriate care for their condition. Simply introducing palliative care discussions earlier in a patient’s journey allows them to take control of their care, often at a time when they feel most helpless.
Finally, a point was made that we hear far too often from both those affected by low and high grade tumours. We heard directly from patients that appropriate rehabilitative follow-up care is lacklustre, especially for our community in Wales where there is no dedicated neuro-specific rehabilitation team.
Much of the rehabilitative care offered is community-focused and currently patients are not offered specific care plans to help them live with the effects and symptoms of their tumour.
What we will do next
Following the roundtable, we are keen to build on our previous successes in Wales by continuing to engage with the brain tumour community through regular consultations about their views and needs.
What we hope to achieve will not be a simple and quick process, but after gathering evidence we will identify high-priority areas where we can make tangible and effective changes to improve outcomes for those affected by brain tumours in Wales.