Like thousands of others, I watched BBC One Drama Care last night. The Jimmy McGovern drama featuring Alison Steadman and Sheridan Smith was a heart wrenching reality of our care system and an all too familiar story.
Care told the story of a single mother (Jenny) who has to care for her elderly mother (Mary) after she has a stroke and develops dementia, and how the local health authorities refuse to take responsibility.
At the heart of Care is Jenny and her battle to convince various authorities to provide and fund the right level of care for her mother. The drama was gruelling to watch in places, but essential to reveal the reality of what thousands of families face. It showed the tension between what constitutes social care and what constitutes health and the huge implications funding has. Poignantly it also showed the devastating impact of dementia and the family’s harrowing and highly emotional decision to care for Mary at home or to rely on the health and social care system.
At one point Mary’s daughter is told by the care home about NHS Continuing Healthcare, when the reality of the cost of care is discussed. NHS continuing healthcare is sometimes referred to as the ‘secret funding’ when the NHS meets the full cost of care regardless of someone’s income or wealth.
The NHS will fund an individual’s care if their primary need is for health. Funding is not granted due to a diagnosis of an illness, but by considering the type and amount of care a person requires.
The drama show Jenny’s daughters research and ask the Discharge Liaison team why they had not been told about the funding. The familiar response being Mary had already been ‘Informally’ assessed and it would be a ‘waste of time’ to reassess. Sadly, this is an all too familiar tale. The drama then shows the daughters attending a highly emotional independent review panel meeting to appeal the NHS’s decision. It harrowingly shows a snippet of the process families have to engage in to get what their relative is entitled to.
For over ten years, my colleagues and I have fought for families to ensure they have secured their entitlement for NHS Continuing Healthcare. Whilst there has been some improvement in the number of people receiving funding, sadly the process has become more bureaucratic, leading to extensive delays and unnecessary appeals due to restrictive NHS decisions. There also continues to be a lack of clear information, leading to patients not being assessed for full NHS funding and therefore having to meet the entire cost of care. This leading to families retrospectively claiming back care fees which were wrongly paid.
In Mary’s case, the care home informing her of the possibility of NHS Continuing Healthcare was a glimmer of hope for her daughters which ensured she received the care and funding she was entitled to. The drama felt true-to-life, hard-won and deeply moving.
Whilst the drama was questioned by some professionals, it echoed my experience of the care system. The lack of clear and timely information; the lack of support; the bureaucratic NHS system; the marginalising of care needs, but most poignant the highly emotional and harrowing decision of placing a loved one in care. Whilst we all know the NHS is under resourced and has budget constraints, families are entitled to information to make informed decisions at such a harrowing time.
Thank you to Jimmy McGovern for relighting this national discussion about our care system.