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When Families Are Left to Hold the Gaps

Children with Life-Limiting Conditions in North East London

East London Children's Community Hospice (ELCCH) was conceived in January 2026 after the closure of Richard House Children's Hospice in December 2025. It was founded by Kareema Motala, a mother of a child with a life-threatening condition, and Paul Richards, the former CEO of Richard House and a bereaved parent. It was built because families were being left to navigate a fragmented system at the very moment they needed joined-up support the most.

The best local estimate suggests that 3,343 children and young people in North East London may benefit from children's hospice care, while 4,006 life-limiting or life-threatening conditions were recorded among 0–24 year-olds across the footprint. Yet only 375 children aged 0–18 were recorded as accessing hospice care. The need runs into the thousands. Recorded access sits in the hundreds.

North East London in Numbers

• 3,343 children and young people estimated to benefit from hospice care
• 4,006 life-limiting or life-threatening conditions among 0–24s
• 375 children aged 0–18 recorded as accessing hospice care — around one in nine
• £1,739,634 ICB spend on children's hospice care in 2024/25
• Newham has the highest borough count (616). Tower Hamlets has the highest rate (73.9 per 10,000)

Why the Data Gap Matters

Fraser's Make Every Child Count research showed that the number of children in England with life-limiting or life-threatening conditions has risen sharply and is projected to continue rising, with higher prevalence in areas of deprivation and in some ethnic minority groups. North East London reflects that pressure in a particularly stark way.

The data that should help services plan for these children is still fragmented. The Children's Commissioner has highlighted that the NHS still does not consistently collect or publish data on how many children are ready to leave hospital but remain there because the right support is not in place — an estimated 50,000 to 100,000 paediatric bed days lost each year.

Disabled children are children in need in law under s.17 Children's Act 1989. Local authorities must provide short breaks under the Short Breaks Regulations 2011, and NHS commissioners must arrange services to meet reasonable needs. Yet in practice, hospice-grade respite and family support have too often sat on an unstable charitable footing rather than a clearly secured statutory pathway.

Borough by Borough

Barking & Dagenham

406 children and young people (58.7 per 10,000). Around 8,500 with SEND and more than 2,900 with EHCPs.

City of London

No separate estimate was identified — 77 resident children with SEND, 24 with EHCPs, 53 on SEN support.

Hackney

431 children and young people (67.8 per 10,000). 8,500 pupils with SEND, 3,520 with EHCPs, 451 children open to Disabled Children's Services.

Havering

371 children and young people (63.8 per 10,000). 12.5% of pupils had statutory SEND in 2022/23.

Newham

616 children and young people (62.2 per 10,000) — the highest count in North East London. 2,597 statements or EHCPs.

Redbridge

524 children and young people (54.7 per 10,000). 13.4% of school-age children had SEN support. Around 8,000 children requiring support.

Tower Hamlets

512 children and young people (73.9 per 10,000) — the highest rate. 4,659 active EHCPs.

Waltham Forest

483 children and young people (63.4 per 10,000). 3,433 supported through EHCPs.

What This Means

North East London is not talking about dozens of children. It is talking about thousands. The gap between identified need and recorded access is the story. The children most likely to be missed are also those most likely to be caught in disputes between health, social care and education, or left waiting while each part of the system counts a different slice of the same child's life.

What ELCCH Is Doing

ELCCH acts as a front door for families — helping them navigate support across health, social care and education, signposting into services, advocating when gaps appear, building local community through events and partnerships, and holding the wider system to account.

Children with life-limiting conditions should not have to become visible only when a family reaches crisis. They should already count.