""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.""
""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.""
"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."
Richard House in Newham closed on 18 December, leaving families of seriously ill children in east London without local hospice care. Parents, working with former Richard House chief executive Paul Richards, plan to open East London Hospice to provide in-home care and emergency respite through a "virtual hospice" model. Families report a loss of a critical safety net for emergency respite and end-of-life care; some have been directed to Haven House in Woodford but report it does not meet their children's needs. Parents have called on Health Secretary Wes Streeting to intervene. The NHS and hospice community arranged alternative care, and the government provided £100m for hospice capital improvements.
Read at www.bbc.com
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