CHILDREN’S Hospice Week 2020 is taking place this week 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 children’s hospices 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 child at home.
Children’s hospices have offered these families an absolute lifeline – finding new ways to connect with families and providing vital capacity to take the pressure off the NHS. But as they are all charities, they have faced unprecedented challenges. With charity shops having been closed from March until mid-June, and supporters have been unable to take part in challenge and fundraising events, they need support now more than ever.
Led by UK charity Together for Short Lives, and launching with a personal video message from the charity’s Patron Holly Willoughby (video above), the national awareness week Children’s Hospice Week will celebrate the amazing children and families UK hospices support, and, of course, the care staff and supporters who have been working so hard during the coronavirus crisis.
Organisers are calling on members of the public to do something amazing and to raise money to help children’s hospices continue to offer care to children now and into the future.
Donna is Mum to Mary (both pictured above) who suffers from a rare genetic mutation that results in regular life-threatening seizures. Mary can only communicate in tiny amounts and faces many complex medical challenges. After her family began shielding, Mary’s Mum Donna was forced to self-isolate in her bedroom due to Covid-19 symptoms and could only watch through a window when Mary was rushed away to hospital following a serious seizure. Donna said: “I watched her being whisked away in the ambulance with her daddy terrified I might not see her again.”
Thankfully, Mary’s Hospice Hope House has been there to support the family through one of their toughest times. “Hope House Hospice calls every two weeks to check if they can help with anything. I know there is always someone there who understands and can listen without judgement.”
“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”.
There will be a lot going on during the week, with the release of a national survey about the lived experience of families caring for seriously ill children and the difficulties they’ve faced, high-profile celebrity supporters will be getting involved, and they’ll be sharing some amazing, heart-warming topical stories about the amazing work being done to continue to offer lifeline care to the seriously ill children and their families.