The social isolation of lockdown is not new to families caring for children with life-limiting conditions.
Many are used to long hospital stays far from home, long periods of illness preventing normal daily activities, being unable to attend school due to health needs, and sacrificing social interactions due to care needs.
But the Covid lockdown has brought many new and often terrifying challenges to local families, many of whom have seen care packages fall away and their wider support networks disappear in the wake of the global pandemic.
Amber and her family usually visit Children’s Hospice South West’s (CHSW) Little Bridge House for respite but because of the Covid pandemic, she has spent many months at home shielding with mum Leala and dad Chris.
The Torrington family saw their usual care packages and appointments cancelled due to Covid, so home visits by care team at the Fremington children’s hospice have provided some of their only support this year.
Leala said: “Lockdown has been incredibly hard on everyone but extra challenging with Amber’s medical issues and no care coming into help.
“Amber’s condition is undiagnosed, but she has complex epilepsy and other medical issues and was getting bored with mummy and daddy.”
“We were one of the first families to have Little Bridge House come out to do a house visit and having Jo and Tracey and other members of the team come out to see us has made her day, even if it was for a couple of hours,” added Leala, who has had to go to work while Amber and her dad have shielded at home.
“Chris has experienced some anxiety during lockdown and was worried about how long this will go on for, so the team at Little Bridge has been a big help to us all.”
Care team member Jo said it was always nice to see the family, especially to get one of Amber’s lovely smiles. She said: “These difficult times can be very isolating for our families as they are spending a lot of time at home and not able to see many people.
“Amber and her family value our visits and Amber is not bothered by us wearing PPE; in fact she seems to find it rather amusing! We chat and play, bring activities with us from Little Bridge House and it helps break up their day – another face, a different voice, and a cheerful smile (under the mask!).”
Since the start of the pandemic, CHSW has developed a ‘hospice, home and virtual’ model to be able to continue caring for families wherever they are and whenever they need it most.
The care team has carried out thousands of community visits to families like Amber’s. They have also made tens of thousands of virtual contacts and supported hundreds of bed nights at the hospices for emergency and end-of-life care.
And with 85 per cent of its funding coming from voluntary donations, the charity is asking people to support this year’s Light Up a Life appeal.
The annual appeal, now in its 24th year, offers the chance to remember a loved one this Christmas, while supporting the vital work of CHSW and North Devon Hospice.
And while the usual church services are unable to go ahead due to the pandemic, both charities hope that people will light a candle and join them at virtual Light Up a Life services being broadcast from each hospice on December 11.
A service from Deer Park will be streamed on the NDH Facebook page at 6pm, followed by a service from Little Bridge House on the CHSW Facebook page at 7pm. Both will feature carols, readings and moments to reflect and remember those no longer with us.
CHSW community fundraiser Dominic Scotting said: “Light Up a Life will be a little bit different this year but we hope that offering people the chance to come together virtually to light a candle and remember a loved one will still be of real comfort, especially during such difficult times.
“And with fundraising so challenging this year, any donations people are able to make in memory of a loved one will be of huge help to our two local hospices.”
To remember a loved one and make a donation, visit www.lual.co.uk.