“We couldn’t have done it without her” – A step-daughter’s perspective on navigating NHS Continuing Healthcare
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In early 2024, a Norfolk family found themselves overwhelmed after the sudden and rapid deterioration in the health of Frances, wife of Charles and step-mother to Sophie. What began as a suspected mental health condition quickly progressed into a devastating neurological diagnosis. As Frances became increasingly dependent on care—ultimately becoming bedbound—her husband, Charles, already managing a full-time business, was left to coordinate all aspects of her care alone.
Despite being advised by hospital specialists to apply for NHS Continuing Healthcare (CHC), Charles encountered repeated dead-ends trying to access the system. The GP wouldn’t take the referral, and social care signposted him to a number for self-referral—something he did not feel confident doing. It was at this point, through a recommendation from a carer, that the family approached Ros at ARROW for help. Mrs Hyde's step-daughter, Sophie, continues the story
"When we first spoke to Dr Ros Setterfield at ARROW, my dad was completely overwhelmed. Frances’ condition had escalated so quickly. She’d gone from someone struggling with balance to being unable to speak or swallow, and by then she was completely bedbound. Dad was doing absolutely everything—running his business, organising all her care, trying to keep on top of the paperwork—and he had no idea how to begin with CHC. We’d been told by her consultants that Frances might qualify, but we didn’t really understand what to do. We spoke to her social worker who wrote to Frances’s GP. The GP wrote back saying they didn’t deal with CHC referrals. So, the social worker gave us a number to self-refer. Dad was dazed and exhausted, and honestly, I was really worried about him. Ros stepped in and took over when we needed it most. She spent hours with Dad on the phone, going through the CHC Checklist and making sense of everything. Straight away, she told us she believed Frances had a strong case for full funding. She organised the paperwork, arranged the assessments, and became our go-to contact with the NHS team. At the Decision Support Tool (DST) meeting, Ros did all the talking. She made sure that Frances’ needs were properly documented and expressed and that nothing was missed. The meeting was intense—it lasted over three hours—but the multidisciplinary team agreed that Frances was eligible, and the ICB approved the funding. “Ros didn’t just support Frances—she supported my dad. She gave him the space to be a husband and a carer, without having to take this battle on himself. I honestly don’t know how we would have coped without her.”
We thought that was the hard part over. But things didn’t get any easier. When the ICB assigned a practitioner to put the care package in place, he was impossible to get hold of. When we did speak to him, he told us the NHS would only pay a small hourly rate and that we’d need to top up the rest ourselves—despite being told all along that CHC covers the full cost. Dad was panicking again. He’d already been paying out of pocket for weeks. Ros didn’t hesitate. Even though her involvement had technically ended, she jumped straight back in to support us. She reviewed the documents, advised on what to say, and made sure we were armed with the facts. She even went back through the NHS framework to highlight what our rights were. Thanks to her, we stood our ground. Eventually, we received confirmation that Frances’ full care package—delivered by our chosen agency—would be funded in full. We were even able to claim back the costs Dad had already paid.” |
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ARROW's Reflections
This case reflects the very real pressure families face when navigating NHS Continuing Healthcare—particularly while already managing complex care at home. Despite being advised by hospital clinicians to apply for CHC, Charles found himself passed from service to service with no clear route forward. The GP declined to take the referral, and social care simply referred him to a phone number for self-referral—something he did not feel equipped to pursue on his own.
Unfortunately, this is a common experience. Families are often left trying to access support through a system that should be working for them, but instead creates delays, confusion, and unnecessary barriers. Once ARROW became involved, the process gained structure. We were able to guide the family through every step: assessing eligibility, coordinating with professionals, advocating during the DST meeting, and ensuring the full clinical picture was accurately presented. Even with a positive eligibility outcome, securing the correct care package was not straightforward—further persistence and oversight were required to make sure funding was implemented appropriately. This case demonstrates not only the critical importance of CHC funding for those with significant health needs, but also the value of skilled advocacy in navigating the system and challenging it when necessary. Families should not have to fight for support they are legally entitled to. With the right help, it is possible to secure both the funding and peace of mind they need to focus on care. If you’ve secured CHC funding but are struggling to get the right care in place, you’re not alone. ARROW provides expert, end-to-end support to ensure funding translates into real-world care. 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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