I care for people who have little time left, yet NHS is wasting it
I MOVED back home to Hull during the pandemic to help my parents care for my grandfather, who has Parkinson’s dementia, and grandmother, who has Alzheimer’s disease.
I thought applying for NHS continuing healthcare (CHC), a package of care fully paid for by the NHS, for Grandad would be clear-cut because he has so many health needs, including hallucinations and depression.
Despite starting the application in October 2019, we didn’t have the first meeting until April 2021.
There was no clinician present, which meant that there was no one to make the case for my grandad’s needs.
Even though I have a health and care background, I couldn’t get my point across; I was asked to be quiet and let the professionals talk.
Throughout the process, Grandad was repeatedly marked down as there just wasn’t an understanding of his form of dementia.
Full capacity for them meant someone who had quite good shortterm memory. For Grandad though, his reasoning was bad, and he’d have paranoid delusions that healthcare professionals were conspiring against him.
Families need to have an advocate who understands dementia and the CHC process, who can share information and help families to articulate their case.
Our CHC application was declined, but the application never allowed me to cover the complexity of grandad’s care need.
It has been a battle I don’t feel I am anywhere near the end of. I’m a carer for two vulnerable people who I know I have very little time left with, and I’m wasting it arguing with people who are supposed to be helping us.
It is vital, we now come together to correct this unfair practice. This is why I’m supporting Dementia UK’S campaign to guide the way to a fairer and more consistent CHC process.
For more information on Dementia UK’S Guiding the Way campaign to raise awareness of CHC funding among families and professionals, in addition to improving the quality and consistency of the system, please visit dementiauk.org/guidingthe-way
Rachael,
Hull.