Parents to open 'virtual hospice' after unit shuts

Families of seriously ill children in east London say they are setting up their own hospice service after being left without adequate care following the closure of local hospice, Richard House.

The facility in Newham closed on 18 December despite a campaign by parents to keep it open in December.

Parents, working with former Richard House chief executive Paul Richards, now plan to open East London Hospice, in order to provide care to families in their homes.

Richards said the aim was to establish a "virtual hospice" serving east London, which he believes could be more sustainable than a traditional hospice building.

Kareema Motala's 15-year-old son Jayden has Lowe's syndrome, a rare life limiting condition. She said the closure had removed a critical safety net.

"As it stands, there's no safe pathway for him to have emergency respite and in the event he reaches end of life, that safety net's now gone," she said.

"Life and death is a minute by minute event that could happen at any given time."

Families have been directed to Haven House Children's Hospice, around 10 miles (16km) away in Woodford, but some parents said it does not meet their children's needs.

Ben Moss, whose son Miles has cerebral palsy, said it had taken years to build trust with staff at Richard House.

"When we first started accessing Richard House, it took us about two years to build up that relationship with them in order to trust them with overnight stays," he said.

"To have that ripped away from us and somebody say, 'don't worry, you can go to another place', it doesn't meet that immediate need."

Parents have called on Health Secretary Wes Streeting to intervene.

Speaking to the BBC last week, he said the NHS and the wider hospice community had acted quickly to put alternative care arrangements in place, and thanked Haven House for its work.

He said the government had provided £100m for hospice capital improvements, along with £26m through the Children's Hospice Grant, which has been extended for a further three years.

Motala said the new virtual hospice was designed to provide more tailored support for families.

"We're just building a bespoke service that actually caters for families," she said.

"I've been in this 15 years and I'm only just finding out about certain things that are available and certain support you can get."

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