Emma Francis is battling to secure NHS funding for her sister Lauren who has lost the ability to walk and now needs dialysis three times per week, reports James Cracknell

The sister of an Enfield woman with Down syndrome who has lost the ability to walk and now needs dialysis three times per week has spoken out after she was rejected for NHS funding.

Emma Francis is battling to secure continuing healthcare funding (CHC) for her sister Lauren, aged 34, and is now waiting for the outcome of an NHS England independent review panel after her application to North Central London NHS Integrated Care Board (NCL ICB) was rejected.

CHC funding, delivered by the NHS, is available to people who are deemed to have a primary healthcare need that cannot be safely managed under the social care remit of local councils. Only people with long-term complex health needs qualify, but Emma says she was shocked that Lauren was not deemed eligible.

Explaining Lauren’s ongoing struggles with her health, Emma said: “In January 2023, Lauren was admitted to hospital with life threatening respiratory failure. She subsequently developed sepsis three times and remained in hospital until October 2023. Lauren spent four of those nine months on complete life support.

“As a result, Lauren permanently lost her ability to walk, and the sepsis left her with end stage kidney failure, requiring thrice weekly haemodialysis to keep her alive.

“Lauren remains doubly incontinent. Her dialysis is delivered via a central venous line that enters her chest from the exterior, leaving her vulnerable to cardiac infection.

“Despite Lauren’s current and ongoing health struggles, we were notified in April that Lauren did not fit the criteria for the CHC funding, and it was deemed that she did not have a primary health need.”

Emma said that subsequent reports and appeals upheld this decision, despite “key evidence” submitted by Lauren’s dialysis consultant. She added that Lauren’s cognitive impairment had also “failed to be recognised” as a factor likely to complicate delivery of care.

An NCL ICB spokesperson has since explained that CHC funding criteria are set nationally and that it had applied them “in accordance with the framework” in Lauren’s case.

However, Emma said: “The system is deliberately arduous, convoluted, confusing [and] evidence provided is often overlooked or omitted, leaving extremely vulnerable people without the correct access to funding and services they desperately need.

“Crucially, if Lauren was to receive her care funding through the CHC model, it would give her access to specialist nursing care and a suitable care home setting which she desperately needs in order for her life to be prolonged as much as possible, and her infection risk to be managed effectively.”

Emma added that she thought the difficulty of obtaining CHC funding was a “quiet scandal” affecting “thousands more” with the system “stacked against them”.

A spokesperson for the ICB said: “We are aware that Lauren’s family do not agree with the findings and conclusions that our teams have reached about her care needs. We appreciate that this is a difficult and frustrating experience for them.

“The CHC criteria and framework are nationally set and the ICB’s responsibility is to apply them equitably and in accordance with the framework.

“We have tried very hard to be extremely thorough for Lauren based on the significant amount of evidence we have gathered and received.

“We are awaiting the outcome of an NHS England independent review panel into those conclusions.

“Working alongside the council, we will readily reassess Lauren for continuing healthcare if her needs change.”

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