Helen’s father was diagnosed with Alzheimer’s and dementia in 2013, shortly after he was also diagnosed with prostate cancer. Around the same time Helen’s mother was diagnosed with bowel cancer. This period was extremely challenging for the family as they navigated through multiple health crises.
Helen’s CHC journey
Helen’s father had been able to remain at home with her mother’s help, but as both parents’ health deteriorated, the family had to consider long-term care options.
The family arranged respite care for Helen’s father, so her mother could receive palliative care at home and sadly in December 2016 Helen’s mother passed away.
Helen’s father moved into a dementia-friendly care home in January 2017. At this stage his care needs were for social care rather than nursing care. He was mobile, just wasn’t safe to live on his own.
In September 2018 Helen’s father slipped in the dining room, which resulted in him spending time recovering in hospital. Over the next few months, his condition worsened significantly, to the point Helen’s father was now immobile, unable to communicate fully and couldn’t do most things for himself. The hospital consultant treating Helen’s father recommended the family should be eligible for NHS continuing healthcare funding, but they would need to move to a full dementia nursing care home.
After reviewing all the suitable homes locally, the family chose a specialist dementia care home and once Helen’s father was settled they decided to apply for continuing healthcare funding (CHC) in early 2019. Funding was declined at the Decision Support Tool (DST) meeting, so the family appealed to the Integrated Care Board (ICB), but again were refused funding.
Helen explains how the process made her feel,
“It’s hard, because emotionally you’re very involved, and we knew how bad Dad was at this point. The assessors didn’t come out to see him, he’s just a name and a number. We assumed that perhaps we’d seen something that nobody else could, and nobody believed us, so we thought perhaps we’re wrong.”
Despite the emotional strain, the family continued to fight for the funding they believed their father deserved.
How Compass CHC helped
In May 2022 Helen discovered Compass CHC through an online advert and decided to seek their help. After an initial telephone assessment, Compass CHC confirmed that in their view Helen’s father had a primary health need. This validation was a significant emotional relief for Helen, who felt heard and understood for the first time in years.
With Compass CHC’s assistance, the family navigated the complex CHC funding process. Although they faced another rejection, Compass CHC advised them to appeal, and with expert advocacy support they eventually won. The funding was backdated a little, and the family felt a sense of justice and validation for their efforts.
Helen said,
“The appeal won. And I remember I was sat at home and an email came in, and I just burst into tears. It’s just knowing that we were right. We weren’t wrong. We weren’t seeing something that nobody else could see.”
Impact
Helen praised Compass CHC for their professionalism, emotional support, and expertise. She highlighted the importance of having an advocate who is well-prepared, and well-informed about the case as well as highly trained in the CHC process. Helen’s experience working with Compass CHC was overwhelmingly positive, and she would recommend their services to anyone in a similar situation.
Helen noted,
“Compass CHC helped in a really difficult situation for our family. The whole CHC process is so confusing and it’s biased against the people that need the help. The funding is there to help people like my Dad, but it’s set to fail them as well. It felt like they were purposefully underscoring.
It’s like a battle, that’s how I see it. All the meetings we’ve attended, the forms completed, all the preparation, and the waiting. It feels like it’s set up to wear you out and put you off continuing with the process. We’re huge supporters of the NHS, but for my Dad when he got to that stage of his life where the support is needed, it seems to be put behind a wall that no one can get over.”
Helen’s journey underscores the challenges families face when navigating the healthcare system for loved ones with complex needs. Compass CHC provided the necessary support and expert advocacy to help Helen’s family secure the funding they deserved.
Learn more: How Mark secured CHC funding for his father, Peter
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