A complex care journey supported by professional advocacy
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Mrs. Harper had been living in residential care for five years due to safeguarding concerns that meant she and her husband could no longer safely live together. After his death, her children made the heartfelt decision to bring her back to the marital home, hoping she could spend her final days in familiar surroundings.
Mrs Harper's eldest daughter, Catherine, led much of the coordination.
She shares her story here " I truly believed bringing Mum home was the right thing to do. She had always said she didn’t want to die in a care home, and being back in the house she had loved for decades felt like the most compassionate choice. But almost immediately, we ran into problems I hadn’t expected. Although we arranged the maximum domiciliary care package—four daily visits—Mum began to fall regularly, often at night. She’d try to make her way to the bathroom alone and collapse, sometimes spending hours on the floor because her pendant alarm had been left on the bedside table. It was heartbreaking. Worse still, she often refused help. She wouldn’t let carers wash or dress her, and she’d turn away food even when she hadn’t eaten all day. At times she was verbally aggressive—insisting people were trying to poison her or steal from her. It was frightening and deeply sad and I could see how vulnerable she felt. Her health was incredibly complex: dementia, previously treated bladder cancer that was slowly spreading, repeated chest infections, osteoarthritis, and features of a long-standing borderline personality disorder. She was using her full pension alongside an active equity release scheme to fund her care at home. However, the available equity was running out, meaning we had to start looking at options to continue funding her long-term care. Living so far apart, my siblings and I couldn’t be there consistently. I felt overwhelmed, out of options. I remembered hearing about NHS Continuing Healthcare (CHC) but had always been told it was only for people who were “almost dying.” I had no idea that Mum’s needs might actually qualify. A friend suggested I contact ARROW, and I decided to find out more. I reached out to Dr. Setterfield—and from our first conversation, she understood the complexity of Mum’s situation. She explained that Mum’s refusal to accept help wasn’t simply personal choice—it was a symptom of her underlying conditions. That changed everything. What followed was incredible. Dr. Setterfield organised every aspect of the CHC process. After receiving written authority from my brother—Mum’s Health and Welfare Lasting Power of Attorney—she contacted the Clinical Commissioning Group on our behalf and initiated a Checklist assessment. She spoke with us at length, carefully drawing out Mum’s history, day-to-day challenges, and patterns of behaviour. She accessed all of Mum’s medical records—from her GP, hospital consultants and the domiciliary care agency—and assembled a full and detailed clinical picture. She didn’t just advise—she took on all the heavy lifting. Following a positive outcome at the Checklist stage, Dr. Setterfield prepared comprehensive written submissions ahead of the Decision Support Tool (DST) assessment. These were clearly structured, thoroughly evidenced, and addressed each care domain in depth. When the DST meeting finally took place, it lasted well over two hours. I honestly don’t know how we would have coped without Dr. Setterfield’s calm determination and sharp focus throughout. "We thought we had no options left - until we found ARROW"
At the end of the assessment meeting, the Multidisciplinary Team (MDT) recommended that Mum was eligible for NHS Continuing Healthcare. Her case was complex and borderline, but the combination of her physical conditions and her consistent resistance to care helped build a clear picture of need. The MDT’s recommendation was passed to the Clinical Commissioning Group (CCG) panel for final decision-making. Thankfully, the panel upheld the recommendation, and formal confirmation of full CHC funding was sent in writing to my brother. The relief we all felt was immense. Mum was able to stay in her home, supported by a 24-hour care package that included a live-in carer and respite support. She was surrounded by the space, memories and familiar comforts that meant so much to her. We visited as often as we could and knew that she was far more at peace at home than she ever could have been in residential care. She passed away peacefully, nine months later—and I know, without question, that we did the very best we could for her.” |
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ARROW's Reflections
Mrs. Harper’s case is a poignant example of how complex health needs and behavioural challenges can fall through the cracks of conventional care systems—particularly when a person appears to be “coping” at home. From the outset, it was clear that her risk of harm, frequent refusal of care, and multifaceted clinical diagnoses warranted a much deeper evaluation than she had previously received.
ARROW took a holistic approach to understanding Mrs. Harper’s needs, going beyond the surface-level presentation to ensure her full clinical picture was represented with clarity and accuracy. By coordinating the CHC process in full—liaising with professionals, gathering records, preparing written submissions, and advocating throughout the assessment—ARROW ensured the family could focus on supporting Mrs. Harper emotionally, rather than navigating an unfamiliar and often opaque system. This case underscores the importance of skilled advocacy in securing NHS Continuing Healthcare for individuals whose needs may otherwise be misinterpreted or overlooked. It also reflects ARROW’s commitment to ensuring families feel heard, supported, and empowered throughout a daunting and often time-critical process. If you’re navigating a complex care situation and feel unsure about your eligibility for NHS Continuing Healthcare, we’re here to help. Contact ARROW today for a confidential conversation about how we can support your application, appeal, or care review. learn more about how arrow can support you with your claim
At ARROW, we provide expert guidance and hands-on support throughout the NHS Continuing Healthcare (CHC) process. We can: ✔️ Arrange an initial Checklist assessment for you or your loved one. ✔️ Fully prepare you for the Checklist and Decision Support Tool (DST) assessments. ✔️ Gain access to healthcare records (for relatives, a certified Power of Attorney or Court Deputyship Order is required). ✔️ Build strong evidence using medical and care records to support your case. ✔️ Draft evidence-based supporting statements for assessment and appeal panels. ✔️ Represent and advocate for you or your loved one at any stage of the process. ✔️ Manage appeals if you’ve been wrongly assessed as ineligible for CHC funding. 💡 If you believe you or your loved one may qualify for NHS Continuing Healthcare, don’t go through it alone--let ARROW guide you every step of the way! 📞 Contact us today for a FREE consultation! |
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