Families affected by the closure of a children’s hospice in Newham are calling on Health Secretary Wes Streeting to step in.
Campaigners are planning a protest outside the Labour MP’s office in Ilford to demand he “restore” care at Richard House in Beckton.
One parent, Nathan Servini, said Streeting is “the only one who can provide the funding” to reopen the hospice.
Richard House provided care and respite to some 300 children with life-limiting conditions and their families from across East London. But it closed on 17th December due to “significant financial challenges”.
Like many hospices, Richard House was a charity relying on a combination of NHS funding, donations and income from charity shops.
The Together for Short Lives charity says there is a £310million gap in NHS England’s funding for children’s palliative care.
Servini relied on Richard House to provide respite care for his 10-year-old son Arthur, who is tube-fed, needs suction at night and chest physio during the day.
He told the Local Democracy Reporting Service (LDRS) the closure had been “emotionally draining” for his family.
Servini said: “We’ve got a severely disabled son who needs care around the clock.
“We get twelve days a year respite at Richard House. It doesn’t sound a lot but we definitely need it”.
Servini said families would miss the relationship they had built with Richard House. He said: “If our son does pass away, we were hoping it would be at Richard House rather than on a children’s ward”.
Families have now been transferred to Haven House in Woodford Green.
The facility is currently “prioritising urgent and essential care”, and “children with the most urgent clinical needs” for those who have transferred in.
But Servini worried what the large increase in patients might mean for the level of care that Haven House might be able to provide.
A Haven House spokesperson told the LDRS all families would continue to receive the same level of care in the long term.
The spokesperson said: “Our clear intention is to ensure that all families continue to receive safe, high-quality and compassionate care, both now and in the long term”.
They added: “We want to reassure families already supported by Haven House that their care and services will continue. Our absolute priority is on maintaining stability and continuity for all children and families”.
Families involved in the Save Richard House campaign now plan to protest outside Streeting’s constituency office at 12A High View Parade, Ilford, 12pm on 17 January.
The campaign wants Streeting to “secure fair funding for hospices” and “support our plan to reopen”.
Servini said he fears there’s a “crisis looming" in the adult and children hospice sector. He said he didn’t want closures to become “normalised”.
He said: “We should be pressurising Streeting – he’s the only one who can support us”.
A Department for Health and Social Care spokesperson said: “We recognise this has been a worrying time for the parents, carers and children who use Richard House, as well as its staff and volunteers.
“The department and local health services have worked together to minimise the impact of this transition and ensure children continue to have access to high-quality palliative and end of life care.
“This government has committed £80million revenue funding for children’s and young people’s hospices over three years and have set out how we will transform palliative and end of life care nationwide – ending the postcode lottery and ensuring every patient and family receives the quality care and support they deserve”.
