Rachael’s experiences of CHC

November 11, 2021

Rachael moved back home to Hull during the pandemic to help her parents care for her grandfather, who has Parkinson’s dementia, and grandmother, who has Alzheimer’s disease. Both of her grandparents still live at home. Rachael and her parents visit at least once a day, and domiciliary services visit four times a day.

Rachael explains the difficulties the family has had in applying for CHC for her grandad.

“I couldn’t get my point across”

“I thought applying for CHC for Grandad would be clear-cut because he has so many health needs that have taken over his life – including a painful degenerative spinal condition, mobility problems and falls, problems with eating and drinking, hallucinations, and depression.

Rachael and her grandfather, smile at the camera, both wearing Christmas hats

Rachael and her grandad last Christmas

Rachael, her Grandma and Grandad at Disney world when she was 5

Rachael, her grandma and grandad at Disney World when she was 5

We started the application back in October 2019 and the Decision Support Tool (DST) meeting was eventually held in April 2021. There was no one in charge so the initial checklist had to be repeated three times as it was either lost or kept on hold for so long that it expired. I kept chasing but nobody would ring me back.

A number of professionals offered to write statements, including the Parkinson’s nurse, the Speech and Language Team, the dietician and the Frailty Support Team. However, none of these professionals were present at the DST meeting. It was just me, our new Social Worker – who had little knowledge of CHC – and the CHC assessor. Despite the National Framework for CHC clearly stating that a health professional should be involved in the assessment, there was no clinician present, which meant that there was no one to make the case for my grandad’s needs.

 “There was no knowledge, no support”

We’ve had such a hard time trying to explain Parkinson’s dementia to healthcare professionals, there’s just no knowledge, no support. Grandad was repeatedly marked down because the District Nurses and other professionals did not understand his form of dementia.

I think a lot of healthcare professionals think it’s Alzheimer’s, and if it falls outside of Alzheimer’s, they don’t get it.

We had healthcare professionals tell us that Grandad had full capacity because they didn’t understand that although Grandad’s short-term memory is quite good, his reasoning is really bad. He has paranoid delusions where he strongly believes things like healthcare professionals are conspiring against him – all sorts of things that mean he can’t make a rational decision about care.

I have a health and care background and even I found the system hard. You just question yourself. I couldn’t get my point across and was asked to be quiet and let the professionals talk.

Grandma and Grandad; taken about 12 years ago at Christmas

Rachael’s grandma and grandad at Christmas, around 12 years ago

Grandma and Grandad on their wedding day

Rachael’s grandma and grandad on their wedding day

“Families caring for a loved one need support”

Our CHC application was declined because the assessor said Grandad didn’t have a primary health need. I felt the application didn’t allow me to properly articulate how each area interacted with and affected the others, meaning the assessors didn’t understand the complexity of his needs. During the CHC assessment, it’s important to talk about what happens on the person’s worst day – but I think families often feel really embarrassed or discouraged about this and worry that it will be perceived as them not providing the right level of care.

Families also need to have an advocate who understands dementia and how the CHC process works, who can share information and help families to articulate their case.

I don’t think a lot of health and care professionals know enough about CHC, and don’t have enough support. Although our Social Worker was great, she’d never done a DST before and she didn’t understand what she was supposed to be arguing.

“It’s two years since we applied”

We have finally been given an appeal date after prompting the assessor once again. It’s two years since we first applied for CHC, but I don’t feel I am anywhere near the end of the battle.

I have been through so many emotions – anger, embarrassment, exhaustion, pure frustration. 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.

Rachael's grandmother and grandfather on their 50th wedding anniversary

Rachael’s grandma and grandad on their 50th wedding anniversary

November 2022 update

Rachael’s grandad sadly passed away at home surround by family on the 20th April 2022.

Two weeks later, Rachael had the independent review panel for her Grandad’s original DST in April 2021. The then CCG backed down and admitted that her grandad clearly had a primary health need and should have had funding from the onset. It was agreed that the family would have care back paid from 1st April 2021.

We’re campaigning for better care so that everyone affected by dementia gets the specialist support they deserve. All too often people living with dementia and their families are left to cope alone. Together we can create a better system.

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