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An update from The Brain Tumour Charity

Seven months into the pandemic, and COVID-19 continues to have a devastating impact for so many people affected by a brain tumour.

Too many have faced significant disruption to their care, with clinic appointments being cancelled, or treatments such as surgery, radiotherapy or chemotherapy being cancelled or postponed.

Following the first peak, we saw a 60% drop in the number of people being referred to a specialist to get critical symptoms of a brain tumour checked out, and a major increase in MRI waiting times across the NHS. 85% of users of our brain tumour experience app BRIAN reported effects of lockdown on their mental health.

Thanks to your support, we were able to respond to a 50% increase in requests to our Support & Information Line and to develop a coronavirus information hub, which has been accessed over 70,000 times.

But as cases continue to rise again, we are unfortunately seeing great distress once more. Some are facing surgery or therapy alone due to hospital visiting restrictions, and many more are understandably concerned about the impact of any delays to their treatment.

For a charity passionately devoted to accelerating a cure, it has been devastating to see the impact of COVID-19 on research into brain tumours. Recruitment to many clinical trials was paused, and the enforced closure of most labs and workplaces saw much of our world-class research put on hold.

While labs have since reopened and we have been able to find new ways to provide support, the pandemic continues to have catastrophic impact on the charity sector.

We are extremely proud to be the largest dedicated funder of brain tumour research in the world, and to be funding nearly £37 million of cutting-edge research. But, like so many other charities, we are now having to adapt to our new level of income, and to a world where so much of our fundraising activities are no longer possible.

Our best estimate of the short-term impact is that we are going to see over a 40% drop in our income this year (a reduction of £4.8 million compared to last year) – and with a second wave now upon us, these impacts may unfortunately continue into the longer-term.

We came into 2020 in a robust financial position, and this has been invaluable in helping us maintain our commitments this year, including our research. But despite significant steps to reduce our costs, including placing over a quarter of our staff on furlough and taking the incredibly difficult decision to cancel our next two research grant rounds, the impacts of the pandemic are not yet letting up.

It is with extreme sadness that we are now in a position where we also need to reduce our single biggest investment after funding research: our passionate, smart and collaborative workforce.

Very sadly, I have shared a proposal with our staff to reduce the size of our team by around 15 posts, and to make significant use of the reintroduced furlough scheme in the interim and then the Job Support Scheme to enable us to protect more roles.

These proposed fifteen redundancies are in addition to around fifteen vacant roles that we have decided not to replace across all levels, as well as four redundancies we’d already made this year.

I cannot stress how sad we are to need to take these steps, and how much we wish there was an alternative. We are absolutely gutted that we are going to lose some really talented and valued members of the team, and that we are having to put many more through such a time of uncertainty.

But, for everyone affected by a brain tumour, we need to ensure we can keep investing in cutting-edge research, in providing trusted information and support and in enabling the change our community so desperately needs to see.

You may have seen recent calls for greater Government support by the Association of Medical Research Charities and others amid warnings the impact on charity fundraising will mean hundreds of millions of pounds less for medical research. For us, not holding our next two grant rounds means we can’t invest in new research projects, which could ultimately see us reduce our spend on world-class research by up to £5.5 million over the next five years. And that really hurts.

But while some of our financial commitments need to be smaller next year to help us recover, one commitment only grows: to be here for our community. Until the day we are no longer needed.

Until brain tumours no longer reduce life expectancy by 20 years on average. Until everyone has access to the best possible care across the UK. Until our disease is no longer ‘underfunded’. Until the brightest minds in brain tumour research have the support they need. Until all patients, whether living with a high- or low-grade tumour, have access to a specialist nurse. Until we see earlier diagnosis for anyone affected. Until brain tumours no longer devastate the lives of those we love. Until a cure.

We cannot spend time mourning the shape and size of the charity we thought we were going to be in 2021, because progress and hope are needed now more than ever.

Instead we must act even more urgently. Call for change even more boldly. Support patients and families even more closely. Fundraise even more creatively. Collect and provide accurate and powerful data to patients, researchers and decision-makers even more readily. Because a cure cannot wait. And neither can our community.

So please know:

  • If you are living with a brain tumour, caring for someone with a brain tumour or worried that you might have a brain tumour: we are here for you.
  • If you want to donate or fundraise to kickstart research and accelerate a cure, campaign for better access to care, raise awareness of the signs and symptoms or volunteer to help however you can: we are here for you (and thank you).
  • If you’d like to share your experiences to help enable change and improve the treatment and care of brain tumours on the NHS: we are here for you.
  • If the pandemic in particular has had an impact on your diagnosis, treatment or care and you’d like to flag this with us to help us advocate for change: we are here for you.

We may be smaller in size next year, but we are here for you, now as ever, and our aims remain the same: to find new treatments, offer the highest level of support and drive urgent change towards a world where brain tumours are defeated.

Thank you so much for all you are continuing to do to help us get there.

CEO of The Brain Tumour Charity, Sarah Lindsell's signature

Sarah Lindsell, CEO.