Critical support in isolation

For a family with a very unwell child, the Covid-19 pandemic has thrown up even more challenges, in addition to those they already face. We spoke with Faye, Mum to five-year-old Luca who has CHARGE syndrome, a life threatening condition which means even the slightest infection can be dangerous and Diane, a Family Team Worker at Acorns Children’s Hospice, to find out how they’ve coped during 2020.

At the height of the pandemic, Faye and the family were strictly shielding at home for their safety. Having both Luca and his nine-year-old brother Zach at home 24/7 added extra pressure on Faye and husband Ben, who has continued to work full time.

Faye: “Any respiratory condition or infection has always been a worry for us with Luca and that’s what makes Covid-19 so scary. It could be deadly for him. “It’s been exhausting. Zach’s constantly hungry and wants you to sit with him and help him and then you’ve got another child that obviously relies on you completely for care, it’s really, really hard. I think this has had a massive impact on all of our mental health.

“It feels like those early days again just after Luca’s diagnosis. We were always careful, but I feel like this has knocked us back. It’s going to take a good while to get back to where we were prior to Covid-19.

“But we’ve felt a lot less isolated with Acorns. They check in with us regularly and we’ve been sent activity packs for Zach and sensory packs for Luca. This has all made me realise how much I value their support and how important it is.”

Diane: “Family Team Workers provide psychosocial support which is a broad term to describe the emotional, psychological support that’s adapted and flexible according to the needs of the family.

“With Covid-19 things have changed quite a bit. The majority of the time I’m working from home and providing that psychosocial emotional support via the phone the majority of the time.

“There are lots of families feeling isolated during this crisis, feeling let down and forgotten as they care for a child or young person with a health condition. Without Acorns there wouldn’t be anyone they could speak to, who understands the system and the difficulties and challenges that they face on a day-to-day basis. It makes a huge difference.”

In the past year Acorns have supported over 780 children and more than 1,220 family members across the West Midlands, including those who are bereaved. Your support means so much, now more than ever, thank you.