Securing funding for care home fees, which can exceed £1,500 per week on average, is a significant challenge for many families. The NHS Continuing Healthcare (CHC) funding, available for individuals with complex healthcare needs, is not means-tested and covers the full cost of care. However, the eligibility criteria, which require a primary health need, can be difficult to meet, with 83% of those undergoing a full assessment being denied.
Maria Esposito's experience with her mother Kathleen, who had Alzheimer's, exemplifies the difficulties families can face. Initially told her mother was not eligible for CHC funding in 2008, Esposito spent ten months appealing the decision, successfully overturning it. However, this success was temporary, as Kathleen was reassessed annually and often found to be no longer eligible, requiring repeated appeals.
In 2016, Esposito and her siblings achieved a breakthrough, securing lifetime funding for Kathleen. Over 13 years, the family saved an estimated £510,000, preventing the need to sell the family home to cover care costs. Kathleen passed away in 2020 at the age of 89.
Navigating the Assessment Process
Esposito, a retired television producer, has shared specific strategies that helped her family secure and maintain CHC funding. A key point is understanding that CHC funding is separate from council-funded social care and is not based on an individual's savings or assets. She advises refusing to answer questions about finances during the application process, as this can distract from objective assessment of needs.
Attending both stages of the CHC assessment is crucial. The initial screening determines if a full assessment is warranted, while the second stage involves a detailed scoring of care needs across 12 domains using a 'decision support tool.' Family members can provide essential information about the individual's condition that healthcare professionals may not be aware of, especially if the individual has cognitive impairments.
Esposito emphasizes the importance of a multi-agency meeting for the second assessment stage, ideally involving professionals who are familiar with the individual's care. This can include representatives from the care home, GPs, and community nurses, in addition to the official assessors from health and social care. Their input is vital for accurately reflecting the individual's daily needs.
Accurately Describing Needs
When describing a loved one's condition to assessors, honesty about the severity of their needs is paramount, even if it involves difficult truths about behaviors like aggression or paranoia, which can be symptoms of conditions like Alzheimer's. Esposito advises against downplaying needs by using phrases like 'we manage' or focusing only on 'good days.' Instead, the reality of the illness and its impact on daily care should be clearly communicated.
Familiarizing oneself with the specific language and scoring system used in the 'decision support tool' is also beneficial. Understanding terms like 'low,' 'moderate,' 'high,' and 'severe' as they apply to different care domains can help in challenging inconsistencies in assessments. For example, if a cognition score significantly changes from one year to the next without a clear medical reason, it can be questioned.
The Appeals Process
If an application for CHC funding is denied, Esposito strongly recommends appealing immediately. This involves documenting any perceived failures in the assessment process, such as intimidation by officials or the absence of a multi-disciplinary team. The appeal should be directed to the integrated care board responsible for eligibility decisions. If a local dispute resolution meeting does not yield a satisfactory outcome, there is a six-month window to request an independent review.
Even after funding is awarded, yearly reviews can lead to reassessment and potential withdrawal of support. Esposito's experience highlights the need for continued vigilance and willingness to appeal these decisions. She ultimately secured lifetime funding for her mother through persistent efforts, including presenting a detailed analysis of her mother's scores over time.
Esposito’s advice underscores the importance of perseverance and thorough documentation throughout the CHC funding application and review process. She notes that much of her success was due to retaining all documentation, which allowed her to build a strong case during appeals.