Charities and Government working together on brain tumour research

2 min read
Earlier this year a campaign led by Brain Tumour Research resulted in the Government acknowledging that more needs to be done for brain tumour patients and their families. Back in April, the then Life Sciences Minister, George Freeman MP, announced the establishment of a Task & Finish Working Group into brain tumour research.

The inaugural meeting of the Government’s Task & Finish Working Group took place on Tuesday 18th October 2016. This was a historic day for Brain Tumour Research. We had unified the voice of a community that had been failed by successive governments and our ‘Invest in a Cure’ manifesto, Maria Lester’s e-petition, the resulting inquiry undertaken by the House of Commons Petitions Committee and the subsequent debate in Parliament had led to this day.

We were delighted that some of the issues that we have been championing for many years, such as the need to establish specialist brain tumour research centres, the banking of tissue samples and drug development featured prominently in the Working Group’s discussions.

Since May 2016, the Government has responded to the Petitions Committee report, agreed that current funding for brain tumour research is not enough and established the aforementioned Working Group.

However, we were disappointed that, in their response to the Petitions Committee, the Government did not acknowledge all of the issues surrounding research into brain tumours. The Government spoke about cancer in general without recognising the complexities of brain tumours, which do not always benefit from general cancer research. The Government also had little of substance on matters such as the challenges faced by young brain tumour research scientists and the importance of explicitly taking account of the number of life years lost to a disease when determining research priorities.

These are issues we plan to discuss in subsequent meetings of the Task and Finish Working Group.

A milestone on our journey

The Working Group is notable for several reasons. It provides an invaluable opportunity for a wide range of brain tumour stakeholders, such as charities, researchers, medical practitioners and the government to cooperate to find solutions for brain tumour patients.

The start of the Working Group also marks an interesting point in our campaign journey. Until now, it has been a case of more traditional ‘political’ lobbying led by ourselves and our supporters, targeting the general public and politicians.

From this point onwards, we are working with different stakeholders to advance brain tumour research policy.

Looking ahead

Two further Working Group meetings are scheduled for 2017, culminating in a report to the Secretary of State for Health. We look forward to the opportunity to collaborate with other cancer charities, listen to recommendations from clinicians and work with civil servants to help formulate new policies which can lead to better outcomes for brain tumour patients.

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