A former CEO and a barrister have started a new children’s hospice for east London families.
Paul Richards and Kareema Motala have launched tech-focused East London Children’s Community Hospice (ELCCH) following the closure of Richard House Children’s Hospice in Newham days before Christmas.
Motala, a parent-carer and barrister, knows from personal experience the vital role the hospice played having used it for a decade for her son Jayden, 15, who has Lowe syndrome.
She said: “No family should have to face the prospect of losing their child.
“I came to Richard House in crisis. After speaking to parents, every single one of them went there after hitting rock bottom.”
Motala and Richards are striving for ELCCH to provide personal care to families whose support has diminished greatly in the months since the Richard House closure.
Their hospice is currently triaging two families. One service they are providing is writing a detailed letter breaking down children’s needs and their necessary care packages that parents can send to the NHS and local authorities.
Being a trained legal professional, Motala noticed that there were discrepancies between advice families were being given and the law.
She said: “It’s about empowering parents to advocate for their needs.
“As a hospice user, I can see the services that are missing.”
Richards, a bereaved parent and former CEO of Richard House, said: “The children and families are right at the heart of what we’re doing. Our organisation was founded by clear unmet needs and crisis.”
Families who were under Richard House’s care could have chosen to transfer over to Haven House, another children’s hospice 10 miles away, but that option raised questions about accessibility.
Parents complained about not being able to take their children for treatment as almost 52% of Newham residents do not have access to their own vehicle, according to an ONS census map.
In a letter to health secretary Wes Streeting, one parent said: “[The closure of Richard House will mean that] parents will be left trying to manage seizures, complex feeds, invasive procedures and end-of-life care alone.”
Financial instability resulted in Richard House’s closure, which led to Paul feeling “blindsided” by the hospice’s board of trustees after he personally raised almost £4millionin a bid to secure its survival.
He said: “It was completely unnecessary. I had secured a grant to help us either merge with another children’s hospice or redesign the services that we were delivering at Richard House.
“But unfortunately the trustees decided not to back my proposal.”
After Richard House’s closure, 136 out of 172 families moved over to Haven House as of January this year.
When asked how they were not going to follow a similar fate, CEO Justin Derbyshire explained Haven House is hoping to build a five-month reserve by April.
Research by Together for Short Lives forecasts 91% of the children’s hospice sector will be operating at a deficit by the end of this year.
However, that is not stopping Motala and Richards from providing care to families just like them.
They said: “East London deserves to be part of a community that gives them the very best support and care.
“That’s a huge motivation for us.”
A Richard House Trust administrator said: “A collective consultation process was undertaken with all staff, during which the potential for closure was communicated should a merger not be successfully achieved.”
The process ended on the 8 December, nine days before the hospice went into administration.
The administrator added though some funding had been pledged, it was solely based on non-binding commitments, meaning it was uncertain and could not be something they relied upon.
They said: “In these circumstances, Richard House Trust remained forecast to run out of cash.”
Feature image: Ben Moss
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