Welsh Cross-Party Group commits to prioritising patient outcomes

The Cross-Party Group (CPG) on Brain Tumours in Wales, for which Brain Tumour Research holds the secretariat, convened at the Senedd on Wednesday 16th September for its first ever meeting. Attended by Members of the Senedd, researchers, clinicians, charity representatives and brain tumour patients, the agenda focused on identifying the main priorities for the new parliamentary session.  

Driving change through collaboration 

The group discussed challenges facing the brain tumour community such as the ‘postcode lottery’ which has resulted in patients needing to travel far distances to attend appointments and clinical trials. Issues were also raised about barriers to acquiring funding, bureaucracy blocking progress and the need for more lobbying and collaboration with ministers to advocate for better patient outcomes. 

Elwyn Vaughan MS encouraged the Group to maintain a clear synopsis of what it wanted to achieve and to identify practical steps that Members could take. This included briefing Members and supporting them with questions that could be put to the Welsh Government. 

Elwyn Vaughan MS

Three key priorities for the new parliamentary session were identified as: 

• Increasing access to clinical trials in Wales 
• Ending inequalities in access to clinical trials 
• Increasing investment in research into brain tumours 

In Wales, 674 people are diagnosed with a brain tumour each year and only 17.2% of patients survive their brain cancer diagnosis five years or more, compared to an average 61.5% for all cancers. 

Following the launch of our Manifesto for Wales in March, we have been actively calling on the Welsh Government to transform outcomes for brain tumour patients in Wales.  Our Plan for Change urges the Welsh Government to address systemic barriers to clinical trials, research funding and access to whole genome sequencing, to bridge the “devolution gap” and ensure Welsh brain tumour patients are not left behind. 

Wrexham-based Joshua Smith, 34, was diagnosed with glioblastoma earlier this year after experiencing unusual symptoms and repeatedly being dismissed by doctors. His treatment plan was six weeks of radiotherapy alongside chemotherapy, followed by further chemo after a break. He also needs to have MRI scans every three months. He and his wife Kelly have been looking into clinical trials and treatments abroad due to lack of options available in Wales. 

“There are options out there that give people hope, but they’re not always accessible here, which is incredibly frustrating. We need more options, more treatments and ultimately a cure," said Kelly. 

Joshua and Kelly travelled to the Senedd to support the calls in our manifesto and urge the Welsh Government do more for brain tumour patients in Wales. Addressing CPG attendees, Josh described the stress and difficulties he experienced and emphasised the importance of accessing treatments locally. 

Speaking to Nigel Williams MS, he expressed concerns about the distance and time to travel for the clinical trials available to him and the provision in his local hospital. Nigel pledged to be a champion for brain tumour patients and use his position on the Health Committee to influence the National Cancer Plan and ensure there is a focus on rare cancers like brain tumours.  

Nigel Williams MS, Joshua and Kelly Smith, Sam Bromiley (our Policy and Public Affairs Manager) 

Researchers highlighted the importance of bottom-up funding that allows promising researchers and teams to develop ideas and build research capacity. Concern was expressed that short-term or disappearing funding pots can make it difficult to retain skilled staff and maintain research programmes. 

The Group discussed the value of drawing together evidence from Public Health Wales, Health and Care Research Wales, research centres, clinicians, charities and people with lived experiences so that future representations to the Welsh Government are supported by a clear evidence base. 

Next steps: 

The Group agreed to: 

• Invite the Health Minister to a future meeting to answer questions on the National Cancer Strategy 
• Write to the Welsh Government to highlight the issues around whole genome sequencing in Wales 
• Submit questions in the Senedd to highlight the group’s priorities