I'm a "newbie" in dire need of moral support and any advice that can be offered. The problem I'm struggling with is CHC admin for my Mum; I'm happy about Mum's healthcare though we're expecting bad news about her actual condition.
The issue on which I seek your advice is the suggestion from the CHC Operational Lead that we should agree to a new CHC application in 2018; and they'd then do a retrospective review of the original CHC application in 2015 that they failed to complete halfway through the process.
I'm not happy about having a new CHC application done before the outstanding one is completed. What are the views of people who've been through much the same process?
I suspect CHC have lost the paperwork / computer files (fortunately I've got mine and have sent copies to them) … and any retrospective actually done would be on the incorrect basis of Mum's condition 3 years after the original application.
My Mum "passed" her CHC Checklist in 2015 and we waited for a co-ordinator of her case to be appointed and for the case to go to the Decision Support Tool Panel. It's probable Mum would have "passed" the DST Panel too. I tried nagging a number of times but was blocked (the CHC co-ordinator hadn't been appointed; until the co-ordinator was appointed there was no-one I could speak to; and the CHC team were moving offices; then silence).
A few weeks ago I was rung up by a new CHC assessor who told me he was trying to sort out what had happened on my Mum's case. There are now 3 years of nursing home fees to be paid by the CCG if the case goes our way.
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BattlingCHC
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When Kevin_1 reads this he will be able to give you advice.
Meanwhile welcome to the site. I live in the USA. When I read about what options there are in the UK for help I am very envious. You may have to battle the bureaucracy but at least you have one to battle.
Here is an old post by Kevin_1 explaining things about CHC
You have to ask yourself this question. Is your Mum more or less likely to get CHC now. Remember being bed bound and less active can diminish risks and problem behaviours which can lower those domain scores.
Was a DST done in 2015? If not I don't see how they could complete a DST now for that time period e.g. a retrospective.
In your shoes I would complete a DST now, myself and then ask myself if the CCG scored lower by a decent margin, would she still likely get CHC now. Currently most CCGs are scoring really quite low.
You might want to get some legal advice on this. You never know, their historic failure to comply with the National Service Framework on timeliness, communication and probably more, might make them liable to pay the back money under some tort or other.
IF the CHC team have lost all or most of Mum's paperwork / computer records then the only paperwork remaining would be my very detailed and externally evidenced (eg by hospital records) completed Checklist. I've also got extensive computer records of emails between the CHC assessors / team, myself and between myself and various others involved in Mum's care.
Any fair-minded person could easily work from that 2015 information, do whatever chasing up of additional records they think necessary and come up with a 2015 DST for the Panel. It's something I'm already doing for the family.
As far as I can see there are no justifiable logical or procedural grounds for the CHC Operational Lead to delay tackling the 2015 assessment; nor to start a new 2018 assessment before the original one is completed. I'm thinking of asking her to explain precisely what records she actually holds now - and those she doesn't. As you say, if she doesn't hold the information she won't actually be able to do a fair retrospective.
I suspect she's trying to hide from her boss's view or other external agencies the incompetence of the CHC process to date. She's only partly responsible for that - most of the failures may be down to her predecessors.
I I think Mum would be less likely to get CHC now - she's less mobile (so lower falls risk) and less difficult to manage.
Any further thoughts you have on tactics very welcome!
I'm currently trying to talk to Beacon Health Care and to Mum's MP (who is a GP and who seems to be a person of high integrity).
Was very impressed reading through your posts, by the way!
Yes, her scoring being lower now was my worry and that in itself is a good argument for reconstructing a 2015 DST. If they agree to that do make sure you are involved as an evidence giver.
I assume you would be the key interviewee were a DST for a 2015 DST and as you say there are records with different services back then. It's just so horribly off grid for them.
You seem to have a good handle on it all. There is nothing I could add that you aren't doing. e.g. Beacon and MP sound like the way to go.
Thanks Kevin. I'm very grateful for your informed and objective view. I'm horribly out of my comfort zone on CHC - the whole thing seems set up to cheat and demoralise.
You're welcome... I think we are all out of our comfort zone on this. The impact on finances and what care is affordable is life changing.
Currently the trend is that many CCGs are driving coaches and horses through the 'regulations'. They are desperate to cut costs. I have had a few stand up fights with them.
You seem to be doing exceptionally well by the way. I've not come across a case where the CCG is looking to go back to their previous errors.
My heart goes out to you - battling for CHC is the very last thing you should have to worry about, on top of PSP itself ! Try caretobedifferent.co.uk it is dedicated to CHC from the patients` view, it`s full of information so be prepared to sit and read for quite a while.
Thank you Nan. I highly rate the "Care To Be Different" site too. At present, we're plodding along under our own steam but I think we may have to "bite the bullet" and use some of Mum's remaining money to get her the NHS funding I'm sure she's entitled to ….
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Does anyone have experience with CHC private health budgets?
My darling Mum
Advice, reassurance or tips! 
