Panic stricken - notification of initial CHC meeting received.

[Saffie]

O my goodness me!
Since my last post was percieved by someone as being critical rather than helpful which was it's intention, I have tried to resist the lure of TP and, although I have read some posts, i have not contributed any, just to be on the safe side.

However, I find that I now am in need of some support from some of those members who have been aware of my past problems with CHC and it's refusal to allow funding for my husband so am, once again throwing myself back into the maelstrom of posting and just hoping I don't cause any misunderstanding.

Although, I did notify the CHC team of my intention to apply for both retrospective and ongoing CHC funding, it was because the final date was looming and after taking advice from an advisor from the AS appeal group. I was not at all sure that I would go forward with it and since I have heard nothing since the acknowledgement of the notification's receipt, I have let it lie.

About 10 minutes ago, the postman delivered a large envelope from the CCG advising me that they will be visiting Dave's nursing home on the 21st of August to complete the checklist!

I am in complete panic mode! I have to send my agreement to this Checklist assessment which of course I will now that the initial step has been taken by them rather than it being left up to me which I had come to conclude that it was. The letter says that I am welcome to attend but I have to let them know if I can only be there at a specific time and they will try to accomodate this. Well, I certainly don't want to be there waiting all day but am more than happy to give them a wide choice.
I really never thought this would happen even though I really know in my heart that I should have tried harder with this as Geum has tried to tell me on numerous occasions!

The background is that the first application, when Dave was in hospital, was rejected before Full assessment because, on the Checklist, the nurse hadn't provided sufficient evidence to satisfy the criteria for the level of need in which she had placed Dave. When offered a CHC advisor to help her complete the form, she - and the social worker then decided that he didn't warrant CHC funding after all. Unfortunately, she simply told me that it had been refused and it was only last year, as the deadline loomed that I re-read the CHC letter (which I'd had to write to request) and picked up on this point. Peviously, I had been concentrating on the fact that I was not allowed to complain.

I really don't know why the thought of CHC application fills me with dread but my stomach is in knots and always has been, every time it is mentioned. Maybe it has something to do with the state I was in at the time of the last application - coming to terms with Dave never coming home despite my frequent appeals for him to do so, looking for a nursing home, dealing with the aftermath of his amputation and all the added health problems that brought to his existing ones. I was also applying for Deputyship and selling our holiday chalet at this time . Whatever the reason, it is now in full ovderdrive! Well, it should be sorted out one way or another now whatever the outcome.

Thank you for reading this - its' a bit long and I apoloise for that. x

 

[Butter]

Hello Saffie. I wonder if you can join in with the carehome on this? Can they take the lead?

I know every case is different, but in my mother's case, we (lead by my father and there will have been a lot I did not know about) attended every meeting and supported every indication that my mother needed all care for everything.

Can you start with the carehome manager?

I think our carehome was anxious to maintain my mother's CHC funding as such residents are valuable.

 

[Saffie]

Thank you Butter. I did tell the manager of the home that I had notified the CHC of my intention to apply but , of course, that was last September and I'm not mentioned it since as haven't been at all sure I could go through with it.
As it is a LA run home, I'm not at all sure, she will care one way or another but equally, I am sure she will want to help. The LA will also be glad to have their contribution to Dave's funding removed, I'm sure!

All Dave's savings over the lower threshold have now been used up on the home fees and so, if he is awarded forward funding only, it will of course, be helpful as although it won't mean the his savings could be repaid, it would help me a little financially as the OPG were happy for Dave's income to contribute towards household bills and expences which, of course, the LA are most definitely not!

If retrospective funding is granted, it would mean that all the angst over the holiday chalet money which should have been mine - long story! - would be repaid along with the rest. I do feel that Dave's needs were greater then than now so I don't have much hope of either being granted to be honest but this way, the decision has now been taken for me and I will take it forward.

I promise you, I will camp out in the home if necessary, to ensure that I am at every single meeting and assessment in the nursing home. I just hope that my being a Deputy without health and welfare attourneryship won't be my downfall!

 

[Butter]

I wish I knew more, Saffie, but I don't.

I do know it is a complicated and much-trodden area of the law. And I know it is getting harder and harder to fund it.

I hope the carehome manager can advise a little. And I hope someone else comes along who knows more than me.

 

[Saffie]

Thak you Butter. I've just rung the CCG team up and spoken to the administrator as the forms for consent mentioned a best interests meeting if the person concerned doesn't have capacity but didn't say anythings further and I didn't know whether I was supposed to complete the form or not! She was lovely and helpful - let's hope the rest of the team are!!!

 

[Shash7677]

Hi Saffie,

I don't know an awful lot about CHC Funding but I do know that when mum had her initial assessment dad went to her NH, I think the assessment had already been carried out and then he sat and had a meeting with the assessor and one of the senior psychiatric nurses at the home.

He then had some paperwork through with their 'findings' as it were and dad corrected anything that was incorrect (mainly dates) mum then had another semi assessment, again dad went to mums home and met with the assessor, her manager and again the senior nurse. They had a bit of a discussion, 2 ladies went outside for 10 mins, went back and said as far as they were concerned mum qualified. It then went to a board of GP's (ridiculous) to be officially sanctioned.

All in all I think it took about 3 months but it was backdated to when mum went into her NH. Now the backdated payment is taking forever, it was all sorted by the beginning of may, dad sent all the paperwork off (LA invoices) and is still waiting for the money to be put into his bank!!!

Mums NH have been really good, neither the manager nor the RMN's believe that anyone should pay for their care.

I really hope your husband gets his funding Saffie, it sounds more than deserved. Lets hope the person carrying out the assessment knows what they are doing this time.

Take care
Sharon

 

[jan.s]

Hi Saffie

That sounds like good news! First step eh!

My advice is to have a copy of the DST form on your computer, and read it through, so you have a good understanding of the statements. I have completed my own for Roger, so I know where I think he is.

The CH should have plenty of evidence to back your application, such as medication problems, nutrition issues etc. I also wrote down my own observations of these things that I felt applied to the application.

I must admit, I do find the process heartbreaking as it focuses so much on the negative, but then I guess that is the point of it.

I also understand how your stomach goes in knots - I found it such an important decision. Remember, only good can come of this application, things can't get worse. Also, like me, you are wiser now about things

I wish you loads of luck on this and keep posting so we now how it goes.

The Care Home will be very supportive on this I'm sure.

Love xx

 

[jeany123]

Dear Saffie I am pleased you have heard back from them and at last you are getting something done ,I can't give advice i don't know anything about it but I wish you well and I hope it goes smoothly ,

Hugs from Jeany xx

 

[sue38]

Hi Saffie,

That's good news, but I understand why you're apprehensive - it's a bit of the unknown.

I would certainly be there for all the meetings. The initial checklist was done without our knowledge and when we finally got a copy of it, well I don't know who this fully continent no communication difficulties man was it described, but it wasn't my dad!

As you've mentioned make sure you have examples to back up your case. So for example under cognition don't just say he can't understand, have an example of when his lack of understanding caused, or could have caused, him to come to harm.

I'm sure you've got the checklist, but here's a link in any event

https://www.gov.uk/government/uploa..._data/file/213138/NHS-CHC-Checklist-FINAL.pdf

We didn't have Health and Welfare LPA (or deputyship) for my dad but there was no issue with that. I hope it goes well.

 

[2jays]

Sorry. Been out of the loop, but back of my mind thought.

Could you have someone from Alzheimer's come with you to support you when the assessment is held, that way if there are any "differences" in your opinion between how you see Dave needing cch and the assessor?

I know I have read on here, that unless you know the questions to ask, you don't get answers and I would guess the alz support person would know the questions to ask.

Just my thoughts

Hugs Safire. Hope you get the funding that,in my opinion, you should have got last time you applied. xxxxx

ps predictive text honest

 

[BeckyJan]

Hi Saffie,
I agree with above comments and do suggest you download a copy of the DST and then work on as much evidence as possible to back up your claim for high, severe or whatever.

I went through an Appeal and the NH Manager was very helpful.

It does good to concentrate on 'risk' and 'unpredictibility' as that is what the ratings in the domains are working at.

Just to add the peer support group who came to do the Appeal assessment were very efficient and not at all threatening. I hope you have a similar group around you.

Best wishes x

Edited to add: One important thing I found helpful was if the team are undecided between two levels they have to take the highest, so if hesitating say between high and severe they have to go for severe. I did have to state this to the Appeal team, they looked shocked that I knew that but had to agree.

 

[Helen33]

Hi Saffie,

Thank goodness you have posted to get some support with this development. Please don't be put off from posting. You are a valued member of TP.

Unfortunately, I know little about CHC because Alan was given it automatically by a hospital consultant when he had a stroke. Because it was automatic my first thoughts were "oh my goodness he must be in a bad way then" as everyone I knew on TP had to fight for it.

There is some wisdom in the TP membership and I hope that as the days pass you will get much information which you can use. It does sound like a lot of work for you now to get information sifted, sorted and in a usable format.

I wish you well and sincerely hope that not only Dave gets CHC but that he qualifies for back payments as it was not your fault that wrong information led to the application being refused.

Love and a (HUG)

 

[gringo]

Hello Saffie,
I’m afraid I have nothing to offer on the CHC. application other than to wish you success.
I read the thread in which your post was judged to be critical. It was a surprise to me that it could be read in that way. It would be a poor day, for us all, if that response put you off participating.

 

[crazyfish]

O my goodness me!
Since my last post was percieved by someone as being critical rather than helpful which was it's intention, I have tried to resist the lure of TP and, although I have read some posts, i have not contributed any, just to be on the safe side.

However, I find that I now am in need of some support from some of those members who have been aware of my past problems with CHC and it's refusal to allow funding for my husband so am, once again throwing myself back into the maelstrom of posting and just hoping I don't cause any misunderstanding.

Although, I did notify the CHC team of my intention to apply for both retrospective and ongoing CHC funding, it was because the final date was looming and after taking advice from an advisor from the AS appeal group. I was not at all sure that I would go forward with it and since I have heard nothing since the acknowledgement of the notification's receipt, I have let it lie.

About 10 minutes ago, the postman delivered a large envelope from the CCG advising me that they will be visiting Dave's nursing home on the 21st of August to complete the checklist!

I am in complete panic mode! I have to send my agreement to this Checklist assessment which of course I will now that the initial step has been taken by them rather than it being left up to me which I had come to conclude that it was. The letter says that I am welcome to attend but I have to let them know if I can only be there at a specific time and they will try to accomodate this. Well, I certainly don't want to be there waiting all day but am more than happy to give them a wide choice.
I really never thought this would happen even though I really know in my heart that I should have tried harder with this as Geum has tried to tell me on numerous occasions!

The background is that the first application, when Dave was in hospital, was rejected before Full assessment because, on the Checklist, the nurse hadn't provided sufficient evidence to satisfy the criteria for the level of need in which she had placed Dave. When offered a CHC advisor to help her complete the form, she - and the social worker then decided that he didn't warrant CHC funding after all. Unfortunately, she simply told me that it had been refused and it was only last year, as the deadline loomed that I re-read the CHC letter (which I'd had to write to request) and picked up on this point. Peviously, I had been concentrating on the fact that I was not allowed to complain.

I really don't know why the thought of CHC application fills me with dread but my stomach is in knots and always has been, every time it is mentioned. Maybe it has something to do with the state I was in at the time of the last application - coming to terms with Dave never coming home despite my frequent appeals for him to do so, looking for a nursing home, dealing with the aftermath of his amputation and all the added health problems that brought to his existing ones. I was also applying for Deputyship and selling our holiday chalet at this time . Whatever the reason, it is now in full ovderdrive! Well, it should be sorted out one way or another now whatever the outcome.

Thank you for reading this - its' a bit long and I apoloise for that. x

Hi Saffie,
Good to hear that things are progressing in the right direction.
Firstly please let me say that I and others have always found your posts very helpful and enlightening.
Just because someone doesn't agree with your point of view don't let this put you off from contributing to TP.
As you are aware some of my posts can be aggressive and confrontational and I have had criticism but it doesn't bother me as I know some of the advice I give helps people who are struggling with this process.
All of this is a matter of opinions and unfortunately everyone has one.
Moving on to your imminent checklist assessment.
Don't worry to much about this .
Do go along if you can but I don't think it is imperative that you attend .
If they so no he doesn't meet the so called criteria then remind them you are perfectly within your rights to demand that they carry out a full assessment anyway.
By law they must oblige you in this request.
As you are fully aware none of this possess is enshrined in law it is only their rules that they are trying to implement.
The NHS are terrified of having anther Coughlan case on their hands so will do everything they can to try an avoid another court case.
Remind them at any meeting or assessment that the assessment must be Coughlan compliant and do they understand what that actually means.
I have won three cases for Chc by being aggressive and taking the fight to them.
I know it's tough as you had many other things to deal with and this can grind you down.
But try and stay strong.
This is their tactic they don't want people to fight for their loved ones statutory rights as this ties up manpower and money.
You have a good deal of knowledge on this subject already use it.
Question everything and ask for everything in writing.
Good luck and remember there are plenty of other people on here who will offer their support and advice.
Mick

 

[garnuft]

I hope it all goes well Saffie and I know how much it will invade your mind.
You have loads of help to call on here (none from me, I know nothing)
but respect and support I have for you, by the bucket load. xxx

 

[Saffie]

What a lovely lot of TPers you are! Thank you so much Sharon, Jan, Sue, Jan and Mick for all your help and advice and thank you Jeany, Helen, Gwen, Gringo and 2jays for your support. It matters not on jot whether you know about CHC or not, I am just grateful for you responding to my plea!

I spoke to the nurse on Dave's wing this afternoon and she doesn't think that Dave will qualify. I also spoke to the manager for some time and she had already received notification of the Assessor's visit. She will be at the home at 9. a.m. and there are 2 checklists to be carried out before she leaves at noon. So I will definitely be there.
The manager has given me a copy of the the Checklist for me to write on and bring to the meeting and one of the DST so that I can become familiar with it just in case the application does go to the Full assessment. I did ask her if there was any benefit to the home in Dave being granted CHC funding and she said that if it was in place and he needed extra care, then they could use it as evidence to obtain funding for more carer time.

I asked the manager about Dave's health records and whether the CHC team would obtain those but she said they had them there in the home. I said, even the hospital records and she said that they had all the appointments made etc. She said I could have a copy of them to read but then went to get the Checklist and DST, talked through those a bit and obviously forgot about the records. She is now on leave for a week so I will ask about them when she returns. I think I need to see those as I am the only one with joined-up awareness of Dave's medical history - and there is an awful lot of it , most of which is pretty relevant to how he is now.

Oddly enough, Dave was very difficult today. Very upset and agitated. I think I'm glad the GP decided not to stop the anti-anxiety medication on Wednesday when I saw her. She thought about it as I said he was very sleepy but then decided to try Dave having it in the evening instead of the morning.
He is also now on ABs for his other hand as the same finger (ring) on this hand is septic just as that on his other hand was. I did know that this hand was starting to fold inwards too and the GP confirmed that it was - worrying.

Thank you again for all your support. xxx

 

[geum123]

Quote:
I spoke to the nurse on Dave's wing this afternoon and she doesn't think that Dave will qualify. Endquote

Straight away you are being misinformed Saffie. Take absolutely no notice.!!!!


The manager has given me a copy of the the Checklist for me to write on

A badly done checklist can be used to obstruct access to a full assessment.
In my Dads case, the check-list deemed him to have insufficient health needs to warrant a full assessment. (Well they got that wrong)
I didn't know at that time, that I could insist he was fully assessed.

Yes you need to get hold of copies of care notes from the nursing home, health records from hospital and doctor, also any records from mental health team (psychiatrist) if they have been involved.
I filled in the DST
I listed absolutely everything from the care notes under the appropriate domains
and cross referred them to show how the needs interact with each other in intensity, complexity and unpredictability.

I have sent you a pm.
xxxx

 

[Eternity]

Saffie,

I'm so glad you are posting. Never be put off coming here by any one.


Good luck with CHC assessments and funding. Sounds daunting but looks like you've got your sleeves rolled up ready to do your best. Great that there is so much good advice here from others.

x

 

[Grannie G]

I hope everything goes well for you Saffie and the advice you`ve been given here helps.

Dhiren doesn`t qualify for CHC so I can`t offer any practical advice but reading the above posts would give me confidence if I were you.

Please do not be upset when you are occasionally misunderstood. People come to TP with all levels of stress and misunderstandings happen. You know you only post to offer help and support and the rest of us know it too.

 

[crazyfish]

Totally agree with geum123.
It's got absolutely nothing to do with the nurse her opinion means very little ignore it.
The rest of geum123 advice is spot on try to go with it.
We were told by a nurse the same as you that my dad wouldn't get through the checklist and sure enough that was the case.
But I insisted a full assessment was carried out anyway as was his right.
Once the full assessment was complete he was granted full CHC.
Mick