Families of gravely ill children in East London are establishing their own hospice service after the local hospice, Richard House, ceased operations, leaving them without sufficient care.
The Newham facility shut its doors on December 18, despite parents’ efforts to advocate for its continued operation in the same month.
Collaborating with former Richard House CEO Paul Richards, these parents aim to launch East London Hospice to deliver care directly to families’ homes.
Richards envisions creating a “virtual hospice” that would serve the East London area, positing it may offer a more sustainable solution compared to a traditional hospice model.
Kareema Motala’s 15-year-old son, Jaden, has Lowe’s syndrome, a rare, life-limiting illness. She expressed concern that the closure eliminated an essential safety net for families like hers.
“As it currently stands, there is no secure pathway for him to receive emergency respite, and if he reaches the end of his life, that safety net is now nonexistent,” she remarked. “Life and death can change in a moment, at any time.”
Families have been directed to Haven House Children’s Hospice, located about 10 miles (16 km) away in Woodford, but some parents feel it does not adequately serve their children’s specific needs.
Ben Moss, whose son Miles has cerebral palsy, shared that it took years to establish trust with the staff at Richard House. “When we initially began utilizing Richard House, it took approximately two years to cultivate that bond with them to feel comfortable with overnight stays,” he noted. “To have that taken away and be told, ‘don’t worry, you can go to another facility,’ doesn’t address our urgent requirements.”
Parents have urged Health Secretary Wes Streeting to take action on their behalf.
In a recent BBC interview, he stated that the NHS and the broader hospice community responded promptly to arrange alternative services and expressed gratitude towards Haven House for their efforts. He mentioned that the government has allocated £100 million for capital enhancements in hospices, in addition to £26 million through the Children’s Hospice Grant, which has been extended for another three years.
Motala emphasized that the new virtual hospice aims to provide more customized support for families. “We are creating a tailored service that truly meets the needs of families,” she explained. “After 15 years in this situation, I’m only just discovering certain resources and support that are available.”
