London’s oldest children’s hospice has launched an emergency appeal for funds as it struggles to meet the “unprecedented demand” for its care.
Richard House in Newham, east London, warned that without immediate support it could soon be forced to turn away some of the capital’s most vulnerable children — many of whom require end-of-life care.
The hospice has been a lifeline for families for the last 25 years, providing specialist care for children with complex life-limiting conditions.
But the hospice says it is now at a critical juncture.
The combined impact of the cost-of-living crisis, the Covid pandemic, and soaring inflation, means it is struggling to keep pace with the demand for its services.
Less than a third (29%) of the hospice’s funding comes from the NHS, leaving the majority to be raised through fundraising activities that have been severely affected by ongoing financial pressures.
The hospice has warned that without urgent support, vital services may be cut, leaving families to care for their seriously ill children at home, without specialist staff or facilities that Richard House provides.
Kareema Motala, whose 14-year-old son Jayden requires round-the-clock care due to an extremely rare genetic condition, said her family “would collapse under the strain” without the support of Richard House.
The family, from Wapping, rely on the hospice for two nights of respite care each month.
Kareema, now 32, has been Jayden’s full-time carer since she was just 17.
She said without the hospice, “I honestly don’t know what we’ll do. There’s nowhere for families like ours.”
Jayden was born with Lowe Syndrome, a condition that has left him almost blind, with severe learning disabilities, epilepsy, brittle bones, rickets and kidney failure. He uses a wheelchair and requires 24/7 care.
In 2023, Jayden broke his femur after a fall and spent 40 weeks in hospital, enduring seizures every five to 10 minutes.
“Caring for him is exhausting. Not just the physical effort, but the stress and worry that comes with his condition, dealing with an almost unending series of mini-crises and all compounded by the almost complete lack of sleep we get,” Kareema said.
“Jayden’s condition is so rare that the nursing staff at Richard House had to learn how to care for Jayden as they got to know him; their knowledge grew with him. Throughout, they have been willing to listen to us, to learn from our own experience and now they have become as expert as we are in understanding what he needs, when he’s in distress,” she added.
“For Jayden, for us – and for all the other children who rely on their expert care – Richard House is irreplaceable, a complete lifeline. The children’s hospice isn’t a ‘nice to have’. It’s an essential part of his life; they are fundamental in enabling our family to keep going.
“There is literally nowhere else for us to go – and to lose this support would be utterly devastating for Jayden and for us.”
Children are referred to Richard House by London’s hospitals.
Some children stay overnight with their families, where they are supported 24/7 by the hospice’s expert team, while others come for day visits or just a few hours at a time, giving parents a break from the demands of caring for a sick child at home.
There are just a handful of children’s hospices serving the entire London region, each already operating at or near full capacity.
Richard House is the only children’s hospice in east London, caring for families in boroughs like Newham, Tower Hamlets, Hackney, Barking and Dagenham, and the City of London.
The hospice was founded in 2000 by local nurse Anthea Hare, who was inspired by her work at the Royal London Hospital in Whitechapel.
Anne Biggs, Director of Care and Family Services at Richard House said it is “shocking and upsetting” that the hospice is not in a position to meet the increasing levels of demand.
“We have stood beside parents as they’ve faced the unimaginable,” she said.
“I have witnessed bravery that takes your breath away - not just from our children, but from their siblings, their parents, and our staff.
“It is both shocking and upsetting that we are now at a point where all this care, this experience, will be unable to meet the increasing demand from families and children within our community.
“To not care for these children would be utterly devastating. The service we deliver is truly excellent – and irreplaceable.”
The hospice needs to raise £1,274,000 by the end of the year.
To date, £686,000 has been raised and a further £250,000 has been committed by a supporter to match the next gifts made, meaning for every £1 donated, £2 will be received by the hospice, up to £250,000.
To donate, visit richardhouse.org.uk/donate.
