COVID-19 Update

Posted in: Informative

In these unprecedented times, the isolation and vulnerability we face today with COVID-19 is a picture we have already become far too familiar with at Tom’s Trust for the children we help every day.

We are now all experiencing first-hand some of what children with brain tumours go through. The challenges of isolation and vulnerability these children encounter is something we’ve been trying to explain and change for those we support.

What is Tom’s Trust doing?

In light of COVID-19, we have put a hold all face-to-face activities for children with brain tumours, including our workshops and neuropsychological assessments. As our psychologists work in hospitals, it is crucial that we protect our vulnerable children and the wider population.

However, we have adapted our service during the current crisis to continue to provide the key psychological support these children so greatly need.

We are still providing one-to-one and group support to children and families via telephone for outpatients, and face-to-face support for inpatients and those in palliative care, where appropriate.

Our psychologists are also now part of the support plan offering sessional support to traumatised front line staff.

In the months ahead we will face great challenges as the current situation leaves our fundraising in an extremely vulnerable position. We are a small charity, and our tiny team is continuing to work remotely to raise funds to support the children and families that we are passionate about.

What extra burdens are our families experiencing during COVID?

Many of our children have been identified by the government as extremely vulnerable to COVID-19 as they’re undergoing chemo/radiotherapy which suppresses their immune system. They’ve isolating for 12 weeks, and social distancing in their own homes. Children in hospital are prohibited from seeing siblings and only one parent is allowed with them. The inescapable ‘death toll’ splashed across the media is putting a heavy burden on these families. Many of our children suffer with cognitively impairment and rely on routine, and don’t understand the change in their schedule, why they’re isolated from family/friends, and can’t keep up with online school classes.

Should one of our children receiving palliative care die during this pandemic (sadly a third of children diagnosed with a brain tumour will die) the funeral will have limited family and friends allowed to attend, leaving many unable to grieve with loved ones. Families may not even have a chance to say goodbye.

Before COVID-19 our children often reported feeling isolated, as their peers don’t understand why they may look different (with scars or shaved head), or act differently as treatment damages cognitive function, leaving them unable to mentally keep up with friends, and the majority (62%) will have a range of life-long disabilities ( i.e. blindness /lost motor function).

COVID-19 has increased our families’ isolation causing additional stress on their already fragile mental health, and greatly exacerbated their anxiousness, and isolation from their families/community, when they rely on this support.

How can you help?

We are reliant on the generosity of our supporters to provide our critical bespoke service to those who turn to us in desperate need – and they need our support now more than ever. 

If you are able to donate to Tom’s Trust we would welcome your support:

If you would like to volunteer with Team Tom  or have any ideas to help us secure our future, we would love to hear from you!

Please contact us info@tomstrust.org.uk.


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