'Worrying' time at Leeds brain tumour charity hit hard by pandemic

“Dealing with a terminal diagnosis is bad enough but then being told they can’t have treatment to make their time longer is very very upsetting.”

By Joanna Wardill
Saturday, 11th July 2020, 6:00 am
Marie Peacock, CEO of the Yorkshire Brain Tumour Charity, based in Headingley. Picture: Jonathan Gawthorpe
Marie Peacock, CEO of the Yorkshire Brain Tumour Charity, based in Headingley. Picture: Jonathan Gawthorpe

The boss of Leeds-based Yorkshire Brain Tumour Charity has spoken out about the “frightening” impact the coronavirus pandemic is having on those it supports as well as its long-term future.

CEO Marie Peacock said demand for the charity's services has soared - while fundraising and income disappeared “overnight” when lockdown hit.

“We have been able to claw a bit back with virtual events and supporters but we are still around 61 per cent down in income to where we expected, which is quite frightening for a charity,” she said.

Yet it has seen a 200 per cent increase in applications for grants, from those struggling to cope financially with the impact of the pandemic - whether through caring for a family member, being unable to work through shielding, being made redundant or delayed benefit payments.

Marie said: “We can’t believe how many grants we’re getting through. It’s been a bit of a shock to us - we didn’t expect that at all.

“It’s just been a difficult time for people, more so than ever. And when you’re dealing with a brain tumour and you’re ill, that’s very distressing as it is, without having to add these worries as well.”

The charity has also been forced to set up an out-of-hours helpline and online chat facility after calls to its usual phone line surged by 150 per cent.

“We’ve seen a massive increase in the need for counselling support. Being in lockdown, and shielding and not being able to get out is terrible.

“But also people who have been caring for their partner at home and their partner has died during lockdown - that is horrific because they can’t have the normal funeral or grieving process.

"They’re on their own, not able to have people around to support them. They haven’t been able to celebrate their life in the way they wanted.”

Marie said many calls to their helpline have been from people who have had their treatments delayed because of the coronavirus pandemic.

“It is a worry. We’re having a lot of people very distressed that they have been diagnosed or been told their treatment is being postponed or cancelled.

“Or the treatment was to prolong their life, not curative, so that’s been cancelled. Obviously dealing with a terminal diagnosis is bad enough but then being told they can’t have treatment to make their time longer is very very upsetting.

“One of the biggest impacts is not being able to get to hospital for appointments. So they are being told these things over the phone at home - receiving these diagnoses on their own, with no-one to support them. That’s been very difficult for people.

“I think most people understand why - with the chemo, it reduces their immunity so the decision has been made to keep them safe.

“People can understand the decision but emotionally it’s really difficult.”

The charity has also launched virtual support groups to replace its usual face-to-face meetings - a venture they hope to continue after the pandemic - in a bid to increase its ability to reach people in need.

Marie said: “It’s forced us to look at other ways of working and we’ll carry on doing that, which is good.

“But there is an increased cost to us in the grants and support we are offering. With income being down, it’s a balancing act - how can we continue to be sustainable? We are doing OK but longer-term we don’t know how long this is going to be going on.

“We haven’t any [fundraising] events now until next year because they’ve been cancelled.

“We can carry on for around six months - after that we won’t have any money.

“It’s good to have a bit in reserves so we really do need to bring money in now. The worry is this is going to carry on for another six months or more.”

To donate and support the Yorkshire Brain Tumour Charity visit https://www.yorksbtc.org.uk/Home.

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