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Covid-19: How has it impacted our community and what our support services are doing to help

The ongoing pandemic has hit our community of people affected by a brain tumour diagnosis hard.

New diagnoses of brain tumours have fallen dramatically; cancer referrals fell to 30% of their level before Covid-19 at the start of lockdown and have only increased to 55% when last reviewed in mid-May.

Reduced access to GPs, A&E and cancer units has driven this fall, and this backlog of missed screening, scans and treatments will take considerable time to make up. Cancer Research UK estimates that in total, 2.1 million people have missed cancer screenings during lockdown.

So many in our community have faced significant disruption to their treatment, with many clinic appointments cancelled, and treatments like surgery, radiotherapy and chemotherapy cancelled or postponed.

42% of BRIAN users reported cancelled treatment or appointments during lockdown. BRIAN is an online app developed by The Brain Tumour Charity, to give people more critical information they need to make decisions about their care.

We can’t underestimate the impact of lockdown on mental health, particularly for those shielding and we know that 85% of BRIAN users reported some detrimental effects of lockdown on their mental health, including anxiety, boredom, and loneliness.

Andrew Dean-Young, an NHS physiotherapist from Cardiff, who was diagnosed with an anaplastic astrocytoma brain tumour in 2016, said: “Having support from people who know you and people with the same experiences is a useful strategy and with all anxiety and mental health conditions alike, talking to people is vital and a great cure.”

The Brain Tumour Charity has rapidly evolved our support for the community affected by brain tumours during these challenging times.

During lockdown we’ve seen a 50% increase in one to one support, and 60% of these support requests have been Covid-19 related.

Our community have asked us about understanding changes to their treatment, assessing what isolation measures to take, and coping with isolation, and our priority has been being there for them to answer these questions.

Yasmin Clapp, one of our Young Ambassadors and living with a brain tumour since her 2017 diagnosis said: The Charity in has made me feel welcomed and wanted and understood. You do not need to feel alone.”

We launched a Coronavirus hub to offer further coordinated support and up to date information, which has seen 53,000 users and 5,200 video views in 13 weeks. The hub includes 15 expert videos answering our community’s urgent questions and community vlogs.

Our Facebook groups and BRIAN chat rooms have facilitated peer support for many people during lockdown. We have also launched in HealthUnlocked, the world’s largest social network for health, helping to facilitate their groups and share support. Our new digital support events have also proved popular, with nearly 200 parents, young adults and carers attending our Zoom support meetings.

Grace Latter, who is living with a brain tumour, said: “When I was first diagnosed, I felt very alone and didn’t know who to turn to for support. I felt the same way when I was told to shield, because I didn’t know anybody else who was in my situation.
“The Brain Tumour Charity’s young persons virtual meet ups were a huge comfort to me in lockdown, and just like when I was first diagnosed, the charity’s team were all there for me.”

In addition, we have responded to the growing needs of those with cancer by coordinating with other organisations such as the International Brain Tumour Alliance (IBTA), OneCancerVoice, Macmillan and Cancer Research UK.