America’s healthcare system was “neither healthy, caring, nor a system”, Walter Cronkite, the US broadcaster, once famously noted. The same could be said for Britain’s health and social-care system which is meant to be looking after, among others, those with dementia and similarly debilitating conditions.
Local authorities and NHS clinical commissioning groups (CCGs) — the organisations overseeing this “system” and deciding if patients qualify for their care to be funded — are nominally in charge but too often are not providing a robust, fair and equitable service for all. While there is legislation and department of health guidance laying out rules to adhere to, clinicians at the coal face do not on the whole understand such regulation or see the need to abide by it.
It’s well known that public bodies are juggling budgetary constraints and staff are under huge pressure but clinicians are frequently left to flounder by senior management, meaning patients and their families suffer the consequences of a failing system and inept decisions. These families, devastated after watching helplessly as loved ones sink into debilitating illnesses, have to go through the traumatic and degrading experience of doing battle with these bodies to prove that their relative or friend is “ill enough” to secure NHS funding, known as continuing healthcare funding. After a patient’s cognition, behaviours, medication, nutrition and other areas are assessed and given scores, clinicians decide whether to establish a “primary health need”, which equates to eligibility for funding. If the patient is deemed ineligible, there is meant to be a right to appeal.
However, practices contravening legislation and professional codes of conduct happen all over. In York, after a six-and-a-half-hour assessment, the CCG removed funding, claiming the patient’s degenerative disease had improved. In London, Richmond CCG went against social service advice that a patient with vascular dementia qualified after it downgraded one score with no explanation; it is now deciding if the family can appeal. In Norfolk, a five-hour assessment resulted in a recommendation for funding but the CCG’s management tried to overturn this, until a joint investigation by advocates and social services revealed malpractice. The CCG backed down. With organisations desperate to save money, professionals not brought to account and a health service ombudsman not fit for purpose, Mr Cronkite would recognise the symptoms of Britain’s ailing system.
Anne Reed is managing director of Paladin Advocates, advising on social and continuing healthcare funding