Our Policy & Public Affairs Manager Cameron Miller, reports
A united community is the key to delivering change for brain tumour patients.
Brain tumour patients all over the world face a devastating diagnosis. Having spoken to thousands of them over the last five years they, without exception, face this disease with courage and the determination to ensure things change for the better.
Some will throw themselves into fundraising, helping to ensure that more money can go towards much needed research to help improve survival rates yet many want to see change now, not just in regards to improved survival, but also in access to healthcare services and lower diagnosis times.
Over the last two weeks I have attended both the Conservative Party and Labour Party Conferences. Both have been interesting experiences with many conversations from across the political spectrum.
I have been in rooms where people have spoken of the need to empower cancer patients, where the NHS has been challenged to do better and criticised by proponents of an insurance based system and heard how people should sell their homes to pay for social care.
You may well agree or disagree with some of these positions, but has there ever been a more important time to be part of the debate in this country?
Brain tumours are the biggest cancer killer of children and the under 40's in the UK with almost 11,000 new diagnosis' a year. It is vital that we are at these conferences to put forward our community's voice as part of any debate concerning issues that are important to brain tumour patients.
We prioritise the issues that we hear on a daily basis including access to healthcare, social care and welfare, but there are countless other issues that affect brain tumour patients.
Outside of the conferences there has also been some well publicised protesting. Taxi drivers in Brighton showed their support for Sadiq Khan's initial decision to refuse to renew Uber's license to operate in London and many standing outside Conservative Conference protested on issues ranging from pensions to human rights.
These very different forms of engagement got me thinking about what we do as an organisation. There is a moment in time when the art of debate and conversation must be the cornerstone of what we do and we need to be in the room discussing our concerns, even with those who we may fundamentally disagree with, and dare I say it we may even have to compromise on some issues.
However, crucially there are also occasions for when shouting the loudest can be beneficial to our cause, and as a rare disease we need to stand, as a community, and bang the drum so we don't get left behind.
Ultimately, our responsibility is to consistently push forward the argument for change and to play our role in improving patient outcomes now and for in the future. This is why we have created opportunities to join us through our campaigner and e-campaigner roles.
These roles empower people to act on the strength of feeling around the big issues that affect our community.
Whether by sending a Tweet or signing an e-petition, to sitting down with a local politician who you may never have envisaged meeting, our policy team is ready to support you in making the case for change.
What both conferences have really shown is that we can't do this without you, so please take action now and join the fight.