This mum faces a nightly battle to keep her daughter alive - but the NHS won't help her

Key Concepts

• Continuing Care: NHS-funded support for children with complex, often life-limiting health needs.
• Postcode Lottery: Disparities in NHS continuing care funding and provision based on geographical location.
• Tracheostomy, Gastrostomy, Jejunostomy: Medical devices for breathing and feeding support.
• NHS Funded Nighttime Care: Support previously provided by the NHS for children requiring overnight assistance.
• Social Care: Services provided by local authorities to support individuals with care needs.

The Plight of Children with Complex Health Needs and Their Families

This report highlights the critical challenges faced by families of children with severe and complex health conditions, particularly concerning the provision of NHS continuing care. The case of Missy, an 11-year-old girl with a rare genetic condition affecting her breathing, digestion, and movement, exemplifies the profound impact of these issues. Missy requires round-the-clock care, including a tracheostomy (breathing tube), gastrostomy (feeding tube in the stomach), and jejunostomy (feeding tube in the bowel).

Loss of NHS Support and Parental Burden

Shelley Mlan, Missy's mother, experienced a significant reduction in support when her local NHS body withdrew funded nighttime care, deeming Missy no longer in need of it. This decision placed an immense burden on Shelley, who describes being brought to her knees and having to manage Missy's complex care needs single-handedly. While acknowledging the life-saving role of the NHS in Missy's survival, Shelley points out that the system, while saving children, is "crippling the parents."

The "Continuing Care" Gap

Continuing care is defined as NHS-funded support for children with the most complex, often life-limiting health needs. However, the report reveals a stark reality:

• Geographical Disparities: NHS spending on children's continuing care varies dramatically across England, ranging from over £60 to just 80 pence per child. This creates a significant "postcode lottery."
• Low Access to Funding: Out of nearly 100,000 children living with life-limiting or life-threatening conditions, only 4% (approximately 4,400) receive this crucial funding.
• High Rejection Rates: More than half of all disabled children referred for NHS continuing care are rejected.
• Families as Unpaid Caregivers: Research indicates that many families are effectively running "little hospitals at home" to keep their children well and alive, despite being let down by the continuing care system.

Addressing Criticisms and Campaigner Demands

When confronted with the argument that families receive "some help" and that parenting is inherently difficult, Shelley Mlan's response is direct: "Come and have a week in my position and and try getting you know, woke up every hour on the hour. If I don't go to her, she could have a fit and she could be dead." This underscores the life-or-death stakes involved in the care of these children.

Campaigners are urging the government to establish children's continuing care as a legal duty. This would ensure:

• Fair assessments for eligibility.
• Adequate and consistent funding across the country.
• Greater transparency in the decision-making process.

The government's current stance is that local NHS care boards are responsible for these decisions.

Conclusion: The Exhausted Parent in the Systemic Gap

For now, Shelley Mlan, like many others, finds herself caught in the gap between the NHS and social care. She is a full-time mother, a full-time nurse, and is utterly exhausted by the relentless demands of caring for her critically ill child without adequate support. The report concludes by highlighting the systemic failures that leave vulnerable children and their families struggling to access essential care.