NHS Continuing Healthcare funding for dementia care under scrutiny as thousands miss out

NHS Continuing Healthcare funding, which covers the full cost of care for patients with complex health needs, remains a lifeline for families facing dementia care bills. Yet officials and experts say the system is riddled with inconsistencies that deny eligible people funding, leaving many to shoulder thousands of pounds in fees. A health think tank warned that 83% of cases assessed this summer were rejected, underscoring a postcode lottery that can determine whether a family qualifies for NHS-funded care rather than private or social care support.

The national policy is clear: CHC funding is not means-tested and can cover the entire cost of a care home or home-based care when a patient’s primary need is health-related rather than social. But assessors have historically differed in how dementia cases are classified. In many instances, dementia-related needs are mislabelled as social rather than health needs, which reduces the likelihood of funding being approved. The result is harsh financial consequences for families, who may be forced to sell homes or liquidate savings to pay for care before any NHS contribution is confirmed.

Care rights advocates say many applicants are unaware of CHC or the potential for backdating, and care homes may not always flag CHC eligibility because they receive lower NHS funding for beds compared with private patients. Lisa Morgan, a solicitor with Hugh James who helps families appeal unsuccessful CHC decisions, notes that dementia patients are particularly at risk of rejection because the illness is often coded as a social need. She explains: “Continuing healthcare is not about the diagnosis itself; it is about the needs arising from that illness. It is also not about the type of care home, and some homes may have contracts that influence their willingness to support CHC applications.”

When to apply is a critical question. Families should not wait for a care home to raise CHC; they can apply as soon as care is required if the patient fits the NHS criteria. A dementia diagnosis alone does not guarantee funding. The challenge is to demonstrate that the patient’s health-related needs are both significant and unpredictable, requiring medical oversight or complex care that goes beyond routine social support. Health needs focus on treating an illness, while social needs cover daily activities such as dressing, personal care or meal preparation. In many cases, assessments hinge on how to articulate those health needs and the level of care required, rather than the setting of care itself. For those nearing the end of life, a fast-track option can shorten the process, with a 24-page checklist used to guide the decision.

Care teams use a framework that includes scoring domains on a scale from A to C, where a single high score can trigger escalation to a full assessment. The process runs through the local Integrated Care Board, with national support from independent bodies that help families navigate the forms and timelines. The Beacon charity provides guidance via beaconchc.co.uk and offers a help line at 0345 548 0300. Beacon describes itself as a source of independent advice on CHC applications, and families are encouraged to consult the Decision Support Tool found on its site to shape evidence and wording that align with NHS criteria.

A strong CHC application hinges on precise language and well-supported evidence. Lisa Morgan urges families to document the real-world impact of each health need, noting that the wording should center on unpredictability, intensity and real-world care challenges. “Use the same vocabulary you’ll find in the Decision Support Tool,” she says. “We want to see whether someone’s needs are unpredictable, challenging and very intense.” Records from care homes, GPs, social workers and family members can all contribute to a persuasive case, and applicants are advised to ensure that records accurately reflect the individual’s health needs. The government’s official checklists and the Decision Support Tool are available online to guide applicants through the process and provide the language the NHS assessors will use in their decision.

If a CHC application is turned down, most cases require an appeal. Official figures show a stark picture: a sizable majority face initial rejection, and regional variations are common. Appeals can be made first to the local board, then to NHS England, with a separate pathway in Wales that has a 28-day limit. Prospective appellants are advised to seek expert help, as success rates rise when a professional is involved—some lawyers report substantially higher success rates than unaided families. While some advocacy services are free, others operate on a no-win-no-fee basis, and readers are directed to the Parliamentary and Health Service Ombudsman for support when in doubt.

Common reasons for rejection include claims that needs are well managed, the wrong type of nursing home being cited for CHC, or a later removal of funding without a change in circumstances. Families who were told they missed CHC in the past can still apply for retrospective assessments; CHC backdating can extend to April 2012, provided records from that period remain accessible. Retrospective awards depend on the historical evidence submitted and the accuracy of contemporaneous care records, and applicants should be prepared for the retention window on records, which varies by institution and jurisdiction.

In some cases, CHC funding can exceed backdated amounts by hundreds of thousands of pounds, potentially transforming a family’s financial outlook. By contrast, NHS-funded Nursing Care—a smaller program—currently pays a fixed weekly rate for those who do not qualify for the full CHC package. If a relative is awarded CHC, there is no upper limit on the potential award; however, backdated payments must be traced to the appropriate date, sometimes spanning many years. The cost of care is a rising concern: charity bodies estimate that private care costs loom large, underscoring why many families pursue CHC relief with renewed urgency.

Lorraine Campbell, a 56-year-old former prison officer, represents a recent case in which a family had to sell their home to cover dementia care bills. Her mother Valerie was diagnosed with advanced dementia and moved into a care home in 2019; Valerie died in 2022 at 81. The family did not pursue CHC during their mother’s lifetime, and it was only after her death that a solicitor helped secure funding. The order for CHC backdated to the period of care would cover fees paid and could amount to more than £200,000, including interest, once processed. Lorraine describes the experience as a “living nightmare,” emphasizing the emotional strain of relocation and redundancy that compounded financial worries. She hopes others won’t have to endure the same hardship and notes that awareness of CHC should be heightened long before a crisis.

The broader campaign to defeat dementia continues to push for earlier diagnosis, better care, and more transparent access to funding. The Daily Mail and Mail on Sunday’s Defeating Dementia initiative, in partnership with the Alzheimer’s Society, highlights the disease’s status as a leading cause of death and a major public health challenge. Alzheimer’s Society representatives say many families remain unaware of CHC or find the process convoluted and time-consuming. They urge families to seek guidance early and consider expert help to navigate the appeal process.

For those seeking to understand their options, resources remain available. The government’s CHC checklist outlines the criteria and the evidence needed to demonstrate health-related needs, while the Beacon charity offers tools to help families prepare for assessment. The Alzheimer’s Society also maintains a symptom checklist to help families identify dementia-related changes and to prompt timely action when care needs escalate. In sum, while CHC can deliver significant relief from care costs, accessing that relief requires careful preparation, precise language and persistence through a multi-step, regionally variable process. The aim of witnesses and advocates is to ensure that dementia is treated with the seriousness it deserves within the NHS funding framework, and that families receive the support they need when a loved one requires complex, ongoing care.