Pandemic causes huge strain on teenager with brain tumour in Godalming
A survey by charity the Rainbow Trust reveals the added stress of the crisis on families they support
Last updated 25th Mar 2021
In the week where the UK marked one year since the first lockdown, a 14 year old with a brain tumour tells us how the pandemic has impacted on her.
14-year-old Jody Gover has been going through treatment after relapsing last year.
Her mother Sarah Levett is backing new survey results being launched this week by Surrey-based charity The Rainbow Trust, illustrating the stress on families caring for a life-threatened or terminally ill child during the pandemic.
In 2021, 56% of respondents said that their family situation was worse or much worse than the first national lockdown and 54% also said that their mental health was either ‘worse’ or ‘much worse’ than in March 2020.
The charity says the survey is a clear indication of the vast pressures families with a seriously ill child are under, as they continue to face stress and anxiety over their health during the pandemic.
63% of parents said the risk of their child contracting COVID-19 was their greatest concern - with 63% still shielding.
Medical treatment has been affected for 51% of families including delayed appointments, suspended treatments and problems accessing medication. One family surveyed said prior to the pandemic their child was assessed by their consultant every 21 days but this has now dramatically reduced to every 12 weeks.
Additional financial strain is being felt by 40% of families with reasons cited including: job losses, income reduction and being furloughed.
The survey highlights experiences from parents including Sarah.
Jody relapsed in November 2020 and needed surgery in December.
Sarah told us:
“This lockdown has been much harder because I’ve felt a lot more fearful. As well as her brain tumour, Jody has special needs which has made her even more dependent on me.
“I’m a single parent and although my Dad is in my bubble, he doesn’t live locally so I don’t get a break. I was made redundant in January this year so it’s been a very tough time for us.
“When Jody first had a brain tumour in 2018 I was able to rely on support from friends and meet them for a coffee and a chat but this time I’ve had to cope on my own, which has been very intense, particularly as Jody hasn’t been at school and has been unable to socialise with her friends.
“Jody’s daily radiotherapy have caused me real anxiety during the recent lockdown as I don’t want to be in and out of hospital during a pandemic, but we have no choice. I’ve become very scared about driving long distances, but thankfully Jody’s Grandma has been a massive help as well as my Dad and Rainbow Trust giving us lifts to hospital so that I don’t have to drive.
“Our Rainbow Trust Family Support Worker, Nicki, has also helped me by having virtual support sessions with Jody, which she loves. Jody can talk to her about her favourite activities and I’m grateful that it’s one opportunity for me to have a little breather while they chat.”
The Rainbow Trust, based in Leatherhead, is calling on the Government not to ignore families, like Sarah’s, with a life-threatened child as restrictions start to lift.
The charity is highlighting the continuing extreme social isolation for these families as they cope with the continuing pressure of caring for a seriously ill child during the pandemic.