Founder and CEO, Brain Tumour Support
Yesterday I was at the last meeting for the 2017/18 parliamentary year of the All-Party Parliamentary Group on Brain Tumours (APPGBT).
And what a year it’s been.
I don’t think that in my 15 years of working in the charity sector in this field there has ever been a year that has created such momentum and awareness of brain tumours. After years of campaigning in order to get politicians, clinicians and funders to sit up and take notice of this under-funded and under-supported disease, we finally seem to be getting somewhere.
In the last twelve months, we’ve had recommendation from the Department of Health and Social Care about the need for greater innovation and collaboration in the field of brain tumours; the Tessa Jowell Brain Cancer Mission was launched; confirmation from the UK Government that it would make a £40 million contribution for brain tumour research via the National Institute for Health; Cancer Research UK announced its intent to invest a further £25 million in brain tumours. But out of the millions of pounds available, the question we need to be asking in the future, according to Dr Kathreena Kurian, a Consultant Neuropathologist from the University of Bristol who was present at yesterday's APPGBT meeting, is “how much have you actually spent?”.
The APPGBT also launched an inquiry into the economic and social impact of brain tumours this year. Many of the people that we support through our counselling, Support Groups or on-line forum gave evidence to this inquiry – it was great to see the stories we hear on a daily basis be used to help improve care and support for brain tumour patients in the future.
But just because we’ve had meetings, and consultations, and inquiries, and reports, and launches of schemes, doesn’t mean anything is going to change any time soon.
Brain tumour survival rates have not improved in the last decade and brain tumours still kill more people under 40 than any other cancers. Many more are left with the devastating effects of non-malignant tumours and 50 people every day receive the news that they have a brain tumour.
I wonder whether we would have reached this position without the tragic loss of Tessa Jowell. That is a heart-breaking thought but she has left an amazing legacy. Now we need politicians who will take on that legacy. And there is a momentum. But it needs more than that. It needs others to sign up to this neglected disease area. We also need more funding into social care. Research monies are welcomed of course, but rehabilitation and palliative care for this cohort of patients is seriously lacking. There is no parity in care across the UK for brain tumour patients and this needs to change.
Whilst it's been an incredible year, let's make sure we really make a difference to anyone facing a brain tumour diagnosis. Let's keep the momentum going.