22 June 2020

It's Children’s Hospice Week 2020

This is…Children’s Hospice Week 2020 - taking place between 22 and 28 June to celebrate and raise vital funds for the 54 children’s hospices across the UK. This year the families supported by us at Rennie Grove Hospice Care have felt the effects of lockdown more than anyone. With social isolation taking its toll, families have been left exhausted after months of providing 24/7 care for their children at home. 

 Max is one of our children who has been isolated at home during lockdown

Karen and John, who have received support from our Children’s Hospice at Home team for the last two years, have been caring for their six-year-old son, Max, who lives with an undiagnosed genetic disorder meaning he needs constant care. Max, who isn’t able to speak, would usually be visited once a week by one of our nurses but currently that face-to-face time isn’t possible as they are shielding Max. However, Karen and John are still able to call the team whenever needed, day or night, if they have concerns and need to speak to someone.  

Karen says: “The nurses have been phoning regularly to make sure we don’t need anything and helped with Max’s recent medication change and taking care of things so we don’t need to and this has meant that we’ve been able to stay at home which is what we’ve wanted.

She adds: “They really understand where we’re coming from and when he was really poorly there was the option for him to be admitted to a hospice but we didn’t want to do that. We wanted to shield him at home as much as we could. We had the option given to us and were able to make a choice and feel supported in that choice.’

Led by UK charity Together for Short Lives, Children’s Hospice Week aims to raise awareness nationally and to celebrate the amazing children and families ​we care for​. To mark the occasion, we're asking people to fundraise in whatever way they can during the week and has even launched a special virtual bingo night on Friday 26 June to help fund the care the nurses provide for children now and into the future. To sign up visit our Virtual Bingo Night page here.

“Coronavirus has changed all of our lives, and families caring for a seriously ill child feel more alone than ever,” says Andy Fletcher, CEO for Together for Short Lives. “Lockdown has been so tough for the children and their families and many will carry on shielding long after social distancing ends. So they desperately need the support of their local children’s hospice more than ever.  That’s why Children’s Hospice Week is so important this year – it is vital that we pull together to protect the lifeline care that children’s hospices provide for vulnerable families today, tomorrow and long into the future”.

Throughout the week, ​we will be sharing some amazing, heart-warming stories about the children and families cared for by the Children’s team on social media. You can find ​us on Facebook here.