THE family of a girl with a rare illness which causes seizures and development delays has told of the difference a “virtual hospice” has made to her life. 

Sia Sneddon, from South Lanarkshire, suffers from neurological condition Aicardi syndrome and for the last year has received help online from Children’s Hospices Across Scotland (CHAS) experts. 

Set up at the start of the pandemic, the virtual hospice – the first of its kind in the world – allows families to be supported from the comfort of their own home.

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Speaking to mark the scheme’s one-year anniversary, Sia’s mum Sally said: “At first we weren’t sure she would be able to use Zoom as Sia has a visual impairment but she made it very clear from the start that she could absolutely do it! 

“She’s a very determined wee girl!”

The virtual hospice offers care to hundreds of families; whether they require clinical guidance, financial advice or bereavement support. 

CHAS Family Support Teams also provide a range of interactive activities, such as art clubs, storytelling, music therapy, play therapy, youth groups and face to face care calls to children and parents. 

Even as lockdown measures begin to ease, this essential service continues and has become an integrated and essential part of CHAS’s services.

Sia, six, also takes part in virtual music therapy with the charity Nordoff Robbins.

Sally said: “Robin House [in Balloch] introduced Sia to music therapy from a very young age. 

“From her very first session, Sia engaged in a way we’d never seen before. It was like watching our child come to life, completely transforming and brought tears to our eyes.”

Sally added: “CHAS has been amazing this year. The team’s attitude is very much ‘how can we do that’ rather than ‘we can’t do that.’ They’ve not let a global pandemic stand in their way.”

Rami Okasha, chief executive at CHAS, said: “The CHAS virtual hospice service was set up in record speed just over a year ago to give the children and families that we care for a lifeline in what has been an incredibly difficult time. 

Glasgow Times:

“Many of the families we support were, and some still are, self-isolating with their usual support systems cut off. We set out to be there for those families and remind them that they are never alone.

“The first of its kind in the world, our virtual hospice was set up just after the first national lockdown and throughout the year, the service has continued to evolve so we can be responsive to the specific and changing needs of families.

“Our virtual hospice is here to stay.”