Has anyone successfully appealed CHC funding for a parent in nursing care?

[HazzleMcDazzle]

88 year old DM had a catastrophic stroke a few months ago which has left her completely unable to move independently and doubly incontinent. She cannot swallow so is now fed via a PEG tube, which leaves her at risk of aspiration pneumonia (which has already hospitalised her since the tube was inserted), and has stroke-induced dementia, with visual hallucinations. Most of the time she has no idea where she is or what's going on around her.

She was admitted to a nursing home around 6 weeks after the stroke as she now needs 24-hour care, and will do for the rest of her life. Despite all this we've just had CHC funding refused as she doesn't apparently meet the threshold. We're now faced with selling everything she owns in order to pay for the care home fees which, minus the pitiful nursing contribution paid by the LA, will be about £1800 per week. To say we're extremely stressed about this would be a massive understatement.

Has anyone successfully appealed a CHC funding decision based on circumstances like DM's? We're going ahead with this but have no idea where to start - the whole care/funding system seems designed to wear you down physically and emotionally and I'm so tired of fighting one battle after another 😔. TIA.

Our family were also recommended Beacon and Farley Dwek for advice on whether to pursue CHC. In our case at the time it wasn’t advised but we appreciated the free phone call and information.

The cases discussed in this thread are heartbreaking. Are the rules very different in Wales?

My dear elderly aunt in Wales had dementia which made her very cross and she needed a walking stick. To complement family popping in she had a carer four times daily, with most of the costs being paid by the council.

Last year she had a couple of minor falls (nothing broken) and was kept in hospital after the second one while a care package was sorted out. There followed a seamless transfer to a dementia nursing home. At the home they began using incontinence pads on her, we think for their own convenience.

After this there was an official meeting to sort out funding. This was covered in full with no argument, despite my aunt being a wealthy lady with comfortable capital reserves.

My aunt recently passed, leaving a family forever grateful to the system…..

I managed to get CHC for my mother. I put everything into chatGPT and it explained helped convey complexity and interwoven needs.
I managed to get priority in behaviour thanks to nurse at home. This nailed it. Coming up for review soon and I’m not sure we’ll get it again as she’s sedated a lot so easier to manage.

I successfully appealed a decision not to award CHC.
I have to say the staff involved were not only incompetent but also liars, the whole system is absolutely shocking.
The CHC manager actually met with me to advise me not to appeal because in their opinion it would be a complete waste of time.

You could try arguing the need is still there - it’s just being successfully managed in the placement! That’s what they are paying for!

I live in the world of young people with learning disabilities - they have challenging behaviour and ICBs try this argument on!

@CHCShitshow would you be able to share more about how you successfully appealed? we have just submitted our appeal for parent with advanced neurological condition and would appreciate any insights into how to approach the next steps!