CHC - paid advice

[Mumsnut]

Mum is being chucked out of her care home now that her dementia has worsened. This has at least triggered involvement from the CPN team and the production of a CHC checklist

We are asking for input into this

We are expecting the full process to be triggered by the preliminary checklist, but it seems that this very seldom results in an award of CHC - even if it should.

There are various firms offering help with the process - for a price - to increase the chances of a good result

Has anyone used such a service?

There are various

I would talk to The Beacon, as they give some free advice

Thank you! Will have a look

I’m not sure there’s much value in paying for it given it will still need to be a health professional completing the DST. You can appeal decisions and in my experience they do sometimes get overturned. You should be involved in the checklist/DST and have an opportunity to challenge any parts you feel aren’t an accurate reflection of your mum’s needs.

Definitely Beacon - they helped me a lot when my OH was in need of care. Having said that it is absolutely true that getting the funding is rare as hen's teeth - even if someone qualifies they wriggle out of it. They rely on people being ignorant of the system, and even if applicants do know what they are doing the money is seldom forthcoming. Frankly the criteria are a complete farce.

Do you have power of attorney?

My OH was turned down twice, and I have two appeals pending, even though he died in February. Oh - and here is the ultimate insult - he was granted funding for two days while he was dying - just at the point when he no longer fulfilled the criteria as he care needs were no longer complex - he was just lying there dying and needed very little.

It is a wholly iniquitous system and wore me out, not only because of all the work involved on top of actually caring, but the way I was insulted and beaten down by those administering the system.

Where will the paid service get the required information from? You? The GP? The care home? Why can you not get that information yourselves?

We applied for this funding for my dad. It was a long and torturous process but eventually it came through (8 months after he died - no dementia but cancer). We started the ball rolling and the GP came to assess him, and the care home filled in their part of it. The hospital were also asked to fill in a section.
I can't remember any part of it that would have needed a third party to organise. You will still need to be involved, I would think. Save your money (as you're not guaranteed to be successful even if they take it on).

Beacon give free advice over the phone - help you to word the application and the assessment "tool" - I downloaded the forms for myself and filled them in myself with advice from Beacon. At the meetings I could then compare what the assessors were saying with my own assessment and have ammunition to challenge their thinking or absence of information or incorrect information.

I had a Parkinsons nurse supporting me, but she said it had been years since one of her patients had been granted CHCF, even though she knew that many qualified.

The whole system relies on beating you down until you throw in the towel. I know why they do this - they do not have enough money to meet the criteria they are supposed to be working to. What needs to happen is an overhaul of the whole system.

The paid services use their own qualified assessors.

Does your mum have additional medical needs beyond the dementia? Have you been advised by anyone that she stands a chance of a successful application (other than the companies wanting to act for you)? It was my understanding that CHC is not awarded for dementia alone - but don't quote me on that. The threshold is certainly very high, and the process is not for the faint-hearted.
Agree that the Beacon are helpful.

Dementia alone does not qualify someone. You have to have complex medical needs and these are very closely defined, which is why you need to have thought through every single category in detail before attending the assessment meeting, thinking through what the person is like when at their worst.

My OH was refused help and he had very complex needs:

• totally unable to stand or walk
• unable to turn himself in bed
• needed help feeding himself
• thought he was being cut up and put down the sewer, amongst other delusions
• all personal care needed - bath, dress etc.
• incontinent with catheter and pads
• refusing meds
• very very thin with compromised pressure areas
• some anti-social/inappropriate behaviour
• and so it goes on and on......but apparently he did not qualify - who the hell does I wonder!?

I was put through hell by the assessors, who often refused to believe what I was saying. One of them said (when I could cope no more and he went into a nursing home) that I should have chosen a cheaper home! How dare he! I chose the most suitable one for my OH - nothing else would have done - and was paying the balance (i.e. the vast bulk of it) from my savings. Money ran through my fingers like water and all his savings were spent out in 3 months.

Please be warned that even if you get the money, there is a ceiling amount and you might still find yourself "topping up" - a laughable phrase!

I assume OP is saying her current care home has said her needs are now nursing rather than residential, which is why she’s being asked to leave.

As many have said, the bar is very high. Unless you think you are on the border line, I wouldn't waste your money.

You could start by doing some of the research yourself, so if your mother's care home have said her condition has worsened then ask for evidence of that. Evidence is what counts when it comes to CHC, specific instances, for example, of challenging, complex, or aggressive behaviour.

If your mother has ever been in hospital, has regular GP or Social Worker visits, any therapy, physio, etc, you can ask for the information under Subject Access Requests.

I won my (dad's) appeal for CHC. It can be done but it's been a long, hard fight.
My dad has since passed away but we've yet to receive a penny.

The whole system is an absolute shambles, in my opinion. The people involved (in my own experience) showed no mercy to a very sick patient. No honour, no integrity, no shame.

@Tumbledglass, We were told my dad qualified for the funding back in January, and the refund would be made on receipt of my acceptance signature (sent by return of post) but we didn't actually receive it until early June. All the ground work was done pre-Covid, so goodness knows how long it would take now.

"No mercy" indeed - I was faced with a dying husband and had expected that (even if they refused the funding) I would be treated with some respect and kindness - but no. I was made to feel like a criminal who trying to work the system.

That's a real shame - but it wasn't my experience. All the assessments were done by community nurses and the care-home, and we only ever dealt with the CCG admin team by email and they were always very professional, following the protocols to the letter and always apologetic for any delays.
Maybe it varies from Trust to Trust? Shouldn't do, but...

Thanks everyone

Mum has advanced AlZheimers and is aggressive. If the carers” backs are turned, she can And does attack fellow residents. So far, though, any attempt at medication has turned her into a zombie who cannot walk or stand up or even stay awake - she is in constant danger of a fall

Her social worker (appointed because of the violence) has asked for the CHC checklist to be done. We wonder to what extent this is Iin Itself just something to be ticked off. It is being completed by her care home and others, but I want to give it the best chance

Arm yourself with information - it is all out there on the net; make sure you are there when the meeting takes place; download the "tool" and fill it in yourself from your knowledge of her.

I found that the professionals did not have a real clue what OH's needs were. They would see him once on a good day and assume he was always like that.

It is a real battle to get CHC and they are very keen to remove it at the first opportunity. Have a look at the AgeUK website, we found it very helpful.

www.ageuk.org.uk/globalassets/age-uk/documents/factsheets/fs20_nhs_continuing_healthcare_and_nhs-funded_nursing_care_fcs.pdf

This is the full questionnaire
www.gov.uk/government/publications/nhs-continuing-healthcare-decision-support-tool

If you are not doing it already, keep a diary, so that when you say, eg, that she gets distressed, you can give examples with dates, and give a frequency. Basically, anything you say from memory isn't counted as evidence, but they begin to accept it as evidence if you have written it down at the time.

We are in a very similar position for almost identical reasons. My brothers and I met with the social worker, care home and mental health professionals last week. They worked through the checklist, agreed my mother needed to be moved and told us she would be getting CHC. We hadn't asked for it and weren't expecting it. So it must vary by location. You may be lucky.