Thousands of individuals in England requiring complex care may be eligible for full funding from the National Health Service (NHS) through Continuing Healthcare (CHC), a benefit that is not means-tested, according to reports. Many families are reportedly missing out on this crucial support, leading them to sell their homes to cover escalating care fees.

Prime Minister Andy Burnham has acknowledged the challenges within England's care system, describing the necessity of selling homes to fund care as a "really awful process." However, a government-funded provision already exists that could alleviate these burdens.

Complex Care Needs and CHC Funding

The NHS Continuing Healthcare (CHC) scheme provides full funding for individuals with complex healthcare needs. This can cover the entire cost of care home placements or home carer visits, which can amount to thousands of pounds weekly. Despite national criteria, the application process has been criticized for inconsistencies, leading to a "postcode lottery" where similar cases receive different funding decisions based on regional health bodies. Official figures indicate that a significant majority, 83 percent, of CHC assessments conducted in the summer were rejected.

Case Study: Lorraine Campbell

Lorraine Campbell, 56, was compelled to sell her home in 2019 to finance her mother Valerie's care after she was diagnosed with advanced dementia. The care home fees amounted to approximately £1,500 per week, or £78,000 annually. Valerie resided in the care home from November 1, 2019, until her death in January 2022 at the age of 81. Campbell stated that neither she nor her mother were informed about the possibility of applying for CHC funding, despite Valerie's significant care needs, including behavioral distress and difficulty with eating and drinking without prompting.

It was only after Valerie's death that a solicitor assisted Campbell in applying for CHC. Last week, the application was approved, and Campbell is set to receive reimbursement for the care fees paid, plus RPI interest, an amount estimated to exceed £200,000. Campbell described the process as a "minefield" and expressed her regret over having to sell her home, emphasizing the emotional distress the situation caused.

Challenges in the Application Process

Experts highlight that many families, particularly those with dementia patients, are not informed about CHC. Furthermore, applications are frequently rejected. Lisa Morgan, a solicitor specializing in CHC appeals, noted that care homes may sometimes discourage applications because they receive a lower rate for NHS-funded beds compared to private patients. This can lead to families being unaware of their eligibility or the timing of applications.

A dementia diagnosis alone is not enough to guarantee you will receive funding. The key requirement is that the patient’s primary need for care must be for health reasons, not for social or personal care reasons

Morgan further explained that dementia symptoms are often misclassified as "social needs" rather than health needs, which are the basis for CHC eligibility. She stated, "Continuing healthcare is not about the diagnosis of an illness, it is about the needs you have as a result of that illness."

Eligibility and Application Timeline

Eligibility for CHC is determined by the nature, intensity, complexity, and unpredictability of an individual's needs, not solely by a diagnosis. While a dementia diagnosis alone does not guarantee funding, the primary need for care must be health-related, not social or personal. Health needs focus on treating an illness, whereas social needs relate to assistance with daily tasks like dressing or hygiene.

Health needs typically focus on treating an illness, while social needs relate, for example, to needing help to get dressed, maintain physical hygiene or prepare food

Individuals can apply for CHC as soon as they believe their relative meets the criteria. Assessments typically begin with a checklist, and if two or more domains receive a score indicating significant need, a full assessment follows. A fast-track assessment is available for those nearing the end of life.

Building a Strong Application

Experts advise families to meticulously document their loved one's needs, focusing on periods of heightened difficulty and using precise language found in the CHC Decision Support Tool. Evidence from care homes, GPs, social workers, and family members is crucial. Using terms such as "unpredictable," "challenging," and "very intense" can help demonstrate eligibility.

Appeals and Rejections

It is common for CHC applications to be initially rejected, with only about 18.6 percent of non-fast-track applicants receiving immediate approval. Charities report that hundreds of thousands of individuals may be wrongly denied CHC. Applicants have six months from the date of an initial assessment rejection to appeal to their local board, with a further six months to appeal to NHS England if the first stage fails. Wales has a shorter 28-day appeal window. If all internal appeals are exhausted, individuals can seek a review from the Parliamentary and Health Service Ombudsman.

Retrospective Claims

It is possible to apply for CHC retrospectively, with claims backdated as far as April 2012. This involves obtaining records from care homes, GPs, and social services to build a picture of past care needs. However, records are typically retained for a limited period, usually eight years.

Potential Financial Awards

If awarded CHC, there is no upper limit to the amount of funding received, and some families have been reimbursed hundreds of thousands of pounds. For those eligible for NHS-funded nursing care, a flat rate of £254.06 per week is provided. Retrospective claims for this benefit also go back to April 1, 2012.