How do I prepare for a CHC review meeting?

[missmarple]

Hello all, and i hope it's OK to post here rather than in long thread.
Dad had CHC awarded earlier this year, what swung it was the behavioural aspect of his disease, he scored the necessary severe on behaviour and cognition and a moderate I think on meds needs as being well medicated for his diabetes seems to make a difference to his levels of aggression.
In the last 8 weeks or so his disease seems to have progressed a lot. He has lost weight (despite eating well) is doubly incontinent, falls very easily. After one fall he became a lot weaker and less mobile. He no longer tries to run out of the house at every opportunity. He can still lash out when people try personal care.
He has all day carers and lives with my brother.
One week ago he was taken into hospital after yet another fall, the ambulance service felt he was not safe in his current home environment. he's still in hospital.
I have been informed by the care agency the CCG want to review. I've been invited to attend a meeting this friday.
I will be visiting Dad in hospital tomorrow, what are the things i should look out for/ what information should I gather to hopefully back up his CHC being continued. Many thanks, Helen

 

[nitram]

"... what information should I gather to hopefully back up his CHC being continued"

All information should consist of evidence otherwise it might be discounted.

From what you have said I would concentrate on evidence of falls and lashing out at carers, this could consist of dated extracts from the carers' logs and as far as the hospital admission is concerned preferably some document from the hospital as to why and when he was admitted and what they consider his current state is.

Try and find out who will be at the meeting, this may help with your collection of evidence.

Have you read through this thread http://forum.alzheimers.org.uk/show...pport-thread&p=1168356&viewfull=1#post1168356

 

[nita]

I would think they are looking into where his care can best take place, either at home with appropriate safeguards in place, or in a care home. Is your brother attending the meeting?

 

[missmarple]

Thanks both. My brother has mental health difficulties and is somewhat "new people phobic" sad to say i had not even considered him being at the meeting, but it is a good idea, I will invite him. Bro has always wanted dad at home but that is looking less likely now, not least because Dad was a hoarder, bro is a hoarder and the environment is not suitable. Still i am going there tomorrow to earmark items which can be gotten rid of with him. I have also booked a house clearance company for next week and am ready to make one big effort to get him home, but bro will have to accept that some stuff has to go because we are looking at hospital bed in living room type arrangements now.
Thanks Nitram for your post, you have always been so helpful with advice on the whole CHC thing.
It would be usueful to hear from others who have experienced the review process.

 

[nita]

I have been through a CHC review meeting, missmarple. Mum's SW attended, the assessor and myself. I had printed off the checklist (which the SW had scored Mum highly enough on) and the Decision Support Tool. If you google this you will find it. It's quite a hefty document to print off. You need to go through it yourself beforehand to see where your father scores highly. At my review meeting, the assessor went through it with us, completing it on her laptop, and told me at the end that she would be recommending funding. There are 12 categories (domains) and the assessors also consider the nature, complexity, intensity and unpredictability of all health needs.

CHC funding can be given to someone cared for at home. My Mum is in her sixth year of Alzheimer's, is bedbound, no longer hoisted, has poor cognition, has had pressure sores and has severe pain from arthritis and cannot easily tolerate it now with the dementia. She can have aggressive, resistant behaviour to carers. We have two carers visit 4 times a day to change her (she is doubly incontinent) and reposition her and give her personal care. At times I have had night care when her pain was poorly controlled. She now sleeps through the night.

We are about to have the second review and I think, because my mother has somewhat improved, we may no longer get funding.

It can be done, having a bedbound person at home but it involves major upheaval in the household. We have had to use our only living room as her bedroom - she has a hospital profile bed, air mattress, box of pads, wipes, lotion, etc. I have used her old bedroom as a kind of storeroom for spare packets of pads, Conti wipes, baby wipes, etc.

Do you think your brother could cope with this, especially having carers coming in as the CGC may not think he can cope alone. My brother has mental health issues but is able to help me care for Mum as he is very patient and good with her. I also have suffered from depression and did find the strain of her condition very hard in the first couple of years.

Is your brother OK about you clearing the house? I know hoarders can be difficult to convince of the need to clear up.

If your father is at all mobile, you will need an OT assessment to look at things like grab rails, standing aids, commodes, etc.
https://www.gov.uk/government/publi...inuing-healthcare-and-nhs-funded-nursing-care

http://caretobedifferent.co.uk/paying-care-home-fees/how-to-get-assessed-for-continuing-care/

PS I have just realised you have had the first review like me. I am not sure what to expect at the review either but if you look at the thread started by stanleypj you will see that Worriednurse responded to my queries about the purpose of the assessment. I now think they may be mainly concerned whether their needs have changed and that the person is being adequately cared for.

If I can be of any help...
A checklist is a screening tool to see whether an individual could be eligible and therefore as your mother is currently eligible, I can't see any reason for this being undertaken at all. If necessary following the review the assessor feels it is appropriate, the DST could be completed, by a MDT. The purpose of the review should be two-fold, the paramount concern being whether the current package of care is meeting needs, the second being whether eligibility needs to be re-considered or not. I'm disappointed to hear that it wasn't fully explained and that it left you distressed and anxious. I hope they provide you with reassurance and your mum gets all the help she needs.

 

[missmarple]

Thanks so much Nita for your long and helpful post. I also went through the 1st assessment, the checklist then the full assessment with DST and managed to get CHC for Dad, it was 11 months ago. Dad got CHC in large part due to his challenging behaviour. Now the review is booked in for Friday, on the hospital ward where Dad is currently following a fall. There'll be the CCG assessor, Dad's CPN, and a physio and OT have also been invited.
Dad lives 2 1/2 hours away by public transport, I'm going to the hospital today to see Dad and gather a s much supporting info as possible for Friday's meeting.
I am feeling depressed at the moment, it has been hard carrying this situation for 3 years, and prior to that I was responsible for my grandfather who has parkinsons then cancer and I had to arrange for him to go into residential care. I may for the 1st time ever go to the GP and request anti depressants. Anyway it's just to say that that it is hard to get into the zone and fight the CCG when you are feeling less than dynamic, but it has to be done and i will do it.
Do you live with your mum? Or is it just your brother?
My bro has always been adamant he wants Dad at home, but he is not always realistic about what would be needed to make sure Dad is at home in decent conditions. Still if it can be done I am for it. I hope my visit to the hospital today will shed some light on his current needs and whether home is still a possibility. It's good to know that your family is managing to keep your mum at home.
This is for StanleyPJ/ the moderators: If it is best for this all to be shifted to the CHC thread then please could this be done? I am sorry for starting a new thread when I realise there is an existing one.
I will post again after the review meeting.

 

[missmarple]

Well we had the meeting at the hospital yesterday. In attendance were Dad's CPN, ward sister, physio, OT, the man form the CCG, manager of Dad's carer agency, man from the CCG, brother and me. What basically happened was that one after the other all the professionals round the table said Dad could not come home. The reasons were his very high risk of falls (his balance has all but been ruined by AD), his inability to process information and verbal commands (so he's very hard to get up off the floor), the fact that the carers do not do a 24 hour service, and his resisting personal care.
To be honest i was so tired by the events of the last 2-3 weeks I just let things unfold. The rational part of me knew it was all sensible, but as his daughter it was hard to hear this, and that he will never go home. Whatsmore the town he lives in does not have suitable homes, so he will have to move away, to one of various places down the coast.
As things unfolded i realised they did not mean to withdraw CHC, which is one positive in this grim story.
My poor Dad will never go home, he'll finish his days in what I guessed used to be called an EMI.
I was so upset afterwards I went to the cathedral and cried and cried. Someone found a priest for me to talk to which was kind, and helpful.

 

[Shedrech]

Hi missmarple - so sorry you are so upset - it is hard to come to this realisation (dad went into his care home in spring, doesn't even leave his floor now)
I'm glad you went somewhere you would receive comfort - how kind of the someone and the priest
So now you know how things stand, at least
Take some time to breath and be gentle with yourself
best wishes to you, your brother and your dad

 

[missmarple]

Thanks Shedrech. Feeling sad but not too bad today. Have been worried about bro rang him today he sounded OKish. Have invited him to spend Christmas with us.