A woman who battled for more than three years to secure NHS Continuing Healthcare funding to support the care of her grandfather, who was living with debilitating Parkinson’s dementia, has said her eventual success was a “shallow victory” as she received the £18,000 payment six months after he died.
Ron, who was “absolutely obsessed with cameras”, keeping just short of 1,000 in the house, was looked after by his children and Rachael, and she said he self-funded his care – however, during the Covid-19 pandemic, she and her family felt that he would greatly benefit from further support. This amount was awarded to cover the period of care from April 1 2021 to April 20 2022, but Rachael said it was devastating Ron was not able to benefit from it – adding that she believed the funding would have allowed them to afford better care for him if it had been accepted during his lifetime.“This wasn’t now going to pay for all the care we’d imagined for him, it wasn’t going to change anything.
Rachael said Ron’s health conditions meant his spine was physically twisted and he could not lift his neck, meaning you “could not see his head” from behind, he struggled with his mobility and required the use of a frame to walk, he could only predominantly eat pureed food towards the end of his life, and he could not dress or wash himself.
The family appealed against this decision and had previously submitted a formal complaint, but the application was declined once again in November 2021. Rachael said she wanted to keep fighting and therefore submitted a second appeal – and following an Independent Review Panel which took place on May 4 2022, the decision was overturned.
“I feel like they took time away from me that I could have been spending with my grandma and grandad,” she said.Just four weeks after Ron’s death, his wife Sandra passed away as Rachael said she just “gave up” and “stopped talking”.