The Brain Tumour Charity meets with Wales Assembly Members

Wednesday 21 November 2018

This month The Charity convened a series of meetings with a number of Assembly Members in Wales, lobbying them on some of the most important issues affecting brain tumour patients in Wales

Access to 5-ALA in Wales

Speaking with Mike Hedges, AM for Swansea East, who lost his mother to a brain tumour, we highlighted the importance of 5-ALA in surgical resection of brain tumours.

With brain tumour patients in the UK denied 5-ALA through 'post-code lottery' access, we campaigned, along with the late Dame Tessa Jowell, on the significance of the surgical aid in survival and quality of life outcomes.

The Government announced earlier this year a national roll-out of 5-ALA across all 27 neurocentres in the UK and NICE (National Institute for health and Care Excellence) included the use of the surgical aid in their brain tumour guidelines, published in July this year.

Previously, 5-ALA was only available in half of these neurocentres.

Despite the Government announcement, 5-ALA is still not available in University Hospital Wales – the only neurosurgical centre in Wales.

Patient experience in Wales

The Charity also met Julie Morgan, AM for Cardiff North and current Chair of the Cross Party Group on Cancer, to discuss the accessibility and efficacy of brain tumour Key Workers in Wales.

Key Workers, also referred to as Clinical Nurse Specialists, is a role developed as a mechanism to promote continuity of care for cancer patients across the whole care pathway.

The 2016 Wales Cancer Patient Experience Survey found that brain tumours rank worst across all cancer types for patients finding it easy to contact their Key Worker as well as Key Workers providing easy and understandable answers to questions from their patients either all or most of the time.

As well as patient experience, we discussed the Rutherford Cancer Centre in Newport with John Griffiths, AM for Newport East.

Rutherford provides proton beam therapy, an advanced form of external radiation therapy that uses high-energy proton beams as opposed to photon X-ray beams, for eligible brain tumour patients.

The Charity wanted to gain a clearer understanding of when this centre would be accepting eligible patients from both England and Wales.

The Less Survivable Cancers Taskforce

We also spoke with Angela Burns AM (pictured), Andrew RT Davies AM, Rebecca Evans AM and Huw Irranca-Davies AM about the poor survival rates of the least survivable cancers and the work of the Less Survivable Cancers Taskforce.

In September, the Taskforce launched its campaign to double the five-year survival rate of the least survivable cancers from 14% to 28% by 2029.

We called on NHS England to include this target in their new long-term plan, which is due to be published in December.

Whilst we campaigned for NHS England to accept our new survival target, we want NHS Wales as well as NHS Scotland and Health & Social Care in Northern Ireland to adopt a similar target to ensure patients diagnosed with a less survivable cancer do not feel they are being written off and given the best possible chance to beat their diagnosis.

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