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Mrs Coster's Story
In a peaceful Norfolk town, 87-year-old Mrs Coster lived in the familiar comfort of her own home, supported by her devoted daughter, Jillian, and a live-in carer. Having relocated from London to be nearer to family, she made her wishes clear: she wanted to stay in her own home—not in a care facility. Her two sons, who held Lasting Power of Attorney for Health and Welfare, supported her in that wish. |
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Mrs Coster lived with multiple complex health conditions: mixed vascular dementia, osteoporosis, osteoarthritis, postural hypotension, transient ischaemic attacks (TIAs), and a history of non-Hodgkin’s lymphoma. She was disoriented in time and place, had no short-term memory, and lacked insight into her own care needs. She was doubly incontinent, severely immobile, and at risk of pressure damage—her Waterlow score was 25. She required an Oxford Journey hoist for all transfers, her BMI was critically low, and she needed a Level 5 (minced and moist) diet in line with IDDSI guidelines due to dysphagia. Communication was limited, and she required constant reassurance and supervision. Her care was unremitting and highly complex.
When the family approached ARROW for support, it was clear that Mrs Coster’s needs warranted assessment for NHS Continuing Healthcare (CHC). But what followed was a masterclass in obfuscation. |
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The Story Unfolds – in Jillian’s Words... |
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“From the outset, it was ARROW who steered everything. Dr Ros Setterfield explained the process and took great care in gathering the right evidence. She initiated Mum’s Checklist and ensured it proceeded properly. It came back positive, just as we thought it would. But then everything stalled. Weeks passed and we heard nothing. Ros chased the ICB multiple times to get a date for the Decision Support Tool (DST) meeting. Eventually, we were told it would go ahead. We all assembled at Mum’s house for the full assessment with the MDT. But halfway through the meeting, the nurse assessor suddenly stopped the process. ‘We can’t complete a full assessment until your mother has been medically optimised,’ she said. It was the first time I’d ever heard that phrase. Mum had recently recovered from pneumonia, but she was stable. Her needs hadn’t changed. Still, the assessor insisted we needed a new occupational therapy assessment for moving and handling. It felt arbitrary. Like a delay tactic. I was in the GP’s surgery that same afternoon arranging the OT referral. A new hoist was installed within days, and Mum was using it without issue. I kept everyone updated and ARROW continued chasing to get the DST rescheduled. But then we heard nothing. Emails went unanswered. We felt completely stonewalled. ARROW pressed for a new nurse assessor—and got one. Eventually, a new DST meeting was confirmed. It lasted nearly three hours. Ros advocated for Mum to ensure the full picture was presented. She covered everything: Mum’s fragile skin, her unhealing wounds, malnutrition, incontinence, mobility needs, dysphagia, repeated chest infections and her swallowing difficulties, placing her at high risk of aspiration pneumonia, and the constant supervision she required. We were hopeful. Then came the decision. The MDT concluded that Mum had no primary health need. They said her care was ‘routine’, her wounds were ‘manageable’, and her needs were ‘social’, not ‘healthcare’. They essentially blamed her frailty—as though her complex dementia, dysphagia, high risk of pressure ulcers and TIAs could be reduced to just being old. As Ros explained to us, this is a common tactic: authorities reframe profound health needs as ‘frailty’, shifting responsibility to social care—and, by extension, to families. They wanted to treat Mum’s needs as if she just needed a bit of help with personal care and managing daily activities. But we were managing a care plan that included hoisting, complex nutritional support, wound dressing, and full personal care around the clock. Several weeks later, we received a letter saying the ICB panel had upheld the MDT’s non-recommendation. Funding was refused. Not long after, Mum passed away from aspiration pneumonia. That’s when Ros asked for the full DST paperwork—and when she saw the discrepancies. Domains had been scored lower than what had been agreed in the meeting. Critical evidence had been excluded or minimised. The whole picture had been distorted. ARROW submitted a request for review, setting out the factual inaccuracies, procedural failings, and failure to apply the National Framework. Ros challenged the entire premise of the assessment from the procedural issues with the first DST, to the MDT’s failure to make a clear recommendation. And that changed everything. Before the appeal even began, the ICB reversed their decision. They accepted that Mum did meet the criteria for CHC, and agreed to fund her care—backdated to the 29th day after the Checklist. If it hadn’t been for ARROW, we’d never have known what we were entitled to, or how to fight back. I still think about how close we came to walking away.” ARROW's Reflections:
This case exemplifies several disturbing trends in CHC assessments. Firstly, the use of the “medically optimised” excuse—a term not grounded in the National Framework—was applied to delay the DST. Secondly, Mrs Coster’s multifaceted health conditions were reframed as social care needs using the now-familiar frailty narrative, a tactic highlighted in many judicial precedents and advocacy reports. Despite clear evidence of a primary health need, it took significant advocacy from ARROW, dogged determination from the family, and the sad finality of Mrs Coster’s death to reverse an unjust decision. The lack of consistency and transparency in the process raises serious ethical concerns. If this can happen to a family with professional support, what of those without? This case also highlights the misuse of pretexts such as “we can’t move to a full assessment until your care is optimised”—a phrase with no legal basis in the National Framework. Such obstacles serve only to delay or derail assessments that should proceed once a Checklist has triggered eligibility. Mrs Coster’s story is a stark reminder that CHC is not simply an administrative process—it is a legal entitlement too often denied by shifting definitions, procedural failings, and bureaucratic resistance. Without ARROW’s leadership from the start—initiating the Checklist, arranging assessments, chasing the ICB, attending the DST, and ultimately challenging the decision—this outcome would never have been corrected. Her case underscores why advocacy matters. And why families, when facing a system designed to wear them down, should never have to face it alone. If you’re facing similar challenges with Continuing Healthcare, don’t navigate the system alone. Contact ARROW to discuss your situation and find out how we can help advocate for the funding and support you or your loved one is legally entitled to. |
