Continuing healthcare - some advice please

[ScapaFlo]

My mother has been assessed as eligible for CHC and I wondered if anyone knew how long this lasts? She has dementia and her care home applied for it - seems they needed funding for additional staff to be able to meet her needs.

She had a couple of falls and ended up in hospital for several weeks. Her care home said they wouldn't be able to have her back. They've just found another home that say they will meet her needs but the fees are so very very expensive and I'm worried that we (family) or she might be saddled with a massive bill once CHC runs out - is there a time limit?

Thanks for any input.

After first application they will review again after a short period of time - will then be reviewed annually - in light of her diagnosis it’s unlikely she would stop being eligible
Be careful over extra costs that you may still have to pay although there might not be too ups some expensive homes add on lots of extras for everything from chiropodist to extra staff to accompany to appointments

Thanks. I know it's going to be assessed again in two months' time but it's reassuring to hear that after that it's an annual assessment. I never think to ask at the time!

She can afford chiropodist but not the £6500 a month (I've just done the sum 😱)

CHC is very difficult to get, you've already got it, and your mother is unlikely to improve. But still gather ammunition for the review. What they're looking for is not medical need, but unpredictability and complexity of medical need - something that needs medical decisions on a daily basis. See if you can get a copy of her assessment, and look up the "CHC decision support tool" on the internet (Not the initial "is it worth assessing for CHC?" questionnaire).

IF CHC were withdrawn - Once her money runs out, Social Services would meet the bill. The trouble comes if Social Services do not agree with the current assessment of her needs and want to move her to a cheaper home - if you wanted her to stay where she is, then they would come to you for top ups.

She scored Severe in two of the criteria and no, her condition will not improve, but her behaviour might. I have the copy of the report, I've been quite impressed with the handling of this so far, given how often I've heard how very hard it is to get the CHC funding.

Ok. Before can give general advice. When you say she got CHC funding for discharge to a new home from hospital, did they do the 30+ page DST meeting that family and a social worker attended with health staff ? It's a thorough long (often 2-3 hours) meeting to complete ch c Decision Support Tool (DST) report- which family attending get sent copy of- that refers to complex, unpredictable etc in summary as reason for full chc funding entitlement Or was it fast track agreed due to belief of terminal end stage deteriorating rapidly ?

A CHC review in two months to me looks like a possible 'discharge to assess' where someone gets positive chc checklist (first stage) and there is alocal agreement by chc health team to fund first two months of a care home to enable discharge whilst the full DST chc (second stage) assessment is done within those 8 weeks. Some end up with CHC ongoing funding, some don't . Or It looks like a fast track chc which can be reviewed in 12 weeks

We don't review CHC funding- that has gone through long DST process for full chc funding- here after a mere 2 months, it's yearly after then as that's a pretty thorough process. However that doesn't mean your area doesn't

Just check that question with hospital and social worker first.

Also, if she didn't have chc funding would she be self funded? Or local authority?

Hi Will

She was assessed for CHC several weeks ago and the assessment found she met their thresholds. This was carried out by a social worker and specialist nurse I believe. They say they invited the family but their records are wrong and I cannot get them to change them (another problem!) They went ahead with the assessment in the absence of family as it looked like we just didn't turn up.

The assessment was requested by her care home.

A day or two after the assessment she fell flat on her face and ended up in A&E then six days later she fell again and was then admitted to hospital as she hit her head again. While she was in hospital the care home said they wouldn't have her back because they couldn't cope with her. Up until now she has been self funding.

She's now been discharged to another care home which provides dementia nursing care and her care is NHS funded. I wondered under what circumstances her CHC funding could be withdrawn.

Thanks for help.

It could be a discharge to assess.

Alternatively she could remain eligible and have a review in a year. If this is the case you need to ensure that the home are documenting all of her difficulties and struggles. It becomes common practice in nursing homes to become used to someone's high level of need and stop documenting each intervention, so the evidence just isn't there when it comes time to review.

Sometimes as people deteriorate they actually become easier to manage, so as someone becomes weaker or spends more time in bed their behaviour is easier, again this could see an end to the CHC funding.
So whilst it's great news that you have the funding, it's not guaranteed indefinitely so you should still get your ducks in order finance wise, as far as possible.

Good luck with it all OP

It becomes common practice in nursing homes to become used to someone's high level of need and stop documenting each intervention, so the evidence just isn't there when it comes time to review. How do actually get them to do this? What do they need to be documenting?

What does 'discharge to assess' mean please?

See comments above, it was explained.

I'm sorry I can't work it out. It would appear to rely on a discharge from hospital, but she was assessed and found eligible before she was taken to hospital with fall injuries. The home she was in told me they would be giving her notice to move once the funding was confirmed and in place as they were not able to meet her needs any longer (sorry forgot that but - so much happened in a short time).

It's bloody awful. And the new home she's in now is 90% male residents and she is not good with men having been bullied by her husband for many years and then assaulted in her first care home in three occasions by the same man. Can I insist she is moved to a women's unit? Even I felt threatened by all the men, one was violent towards a care assistant, one was very huggy and wanted to cuddle me and one was swearing away effing and blinding and using the 'c' word. Dementia is a cruel illness and I know it's not their fault, but my mum is vulnerable too and will hate being surrounded by men.

OP, you can get the answers and someone to discuss this with, by contacting the CHC team in your local health CCG (care commissioning group which is a bit like your local Nhs effectively)

If you don't have the number Google them

1. Ring them, ask how long CHC funding was agreed for and what the purpose of review in 2 months is and date? (as it'll already be booked ) so you can attend
2. Ask for copy of CHC DST report for your records as her family representative (if you are, as there maybe a different family member who was sent this).
3. Discuss with them your observations about mum and the care home - since if CHC funded by ccg, they have responsibility for managing her placement

• You can't get advice from internet forum about whether there might be a better 'women only' unit for your mother as no stranger on internet will have the multi agency assessment of her needs nor know service provision where she lives.

Thanks. I have the report. I know why I wasn't invited to the assessment - because their records are wrong. They likely sent the invitation letter to an address that was vacated six years ago. God knows where they got that address from, it's on none of the recent paperwork.

I can't get the CCG CHC office to answer emails and every time I call them they take a message but don't get back to me. I dare not send them my power of attorney as I think they would lose it and not send it it back!

This is all new to me. I'm asking Mumsnet as I see other people being helped through all sorts of issues because other people have had the experience. I see in this very thread that other people seem to know jargon or specific terms that I don't understand. I'm sorry I don't know stuff.

But thanks for replying. I put read receipts on my emails so I know they are not being read. It's just so hard getting decent accurate information.

OK so you do have ChC Decision Support Tool report not ch C Checklist one. That's good.That's what PPs where asking

Someone gave them your old address (it might have been old carehome). You need to Go back to adult social services, gp surgery, chc office , new carehome, etc to ensure your details are updated at all sources including updated email and mobile as well as address.

Go to their complaints dept, send in written one , that you are not getting replies and list number of attempts to discuss with them. They have a set time to deal with complaint and put in writing outcome to you. The complaints team will prompt the CHC team to contact us ou, so make sure you have put contact details on complaint

Sorry my tablet has a mad autoincorrect
3rd sentence is supposed to read 'That's what PPs were asking'

Thanks

I think the old address came from when another relative took mum to the local hospital 7 or 8 years ago and I can't get the Trust to update it. Individual departments update their record then mum moves and the address update gets lost. I've been thinking about contacting PALS.

I'm sorry about the confusion, I thought I'd said I did have the report.

I guess I need to make a lot of noise on the basis that the squeakiest wheel gets the most oil. I've really noticed a decline in the NHS service with this latest episode. It really seems to be creaking. And adult social care seems to have about three staff for the entire county.

Erm. I don't think aspects of your last paragraph are needed. (Who do you think has been helping you on here? )

Eh? Surely it's well documented that both NHS and SS are struggling with too few staff and to much workload? And this is the place to express frustration with coping with elder care.