round in circles

[connieonny]

The live in care option now not going to happen - things have moved on. Permanent care has been a horrendous decision to make, but the time has come and it will happen - hopefully still in a controlled way, in a Home we feel comfortable with. It is not easy as we don't sleep much, MiL being up most of the night, distressed, confused and aggressive despite her antipsychotic.

She has been assessed for one Home (emd) who refuse to take her due to her night time activity. Next Home for assessment will be an EMI residential and, failing that we are on a list for placement in October for EMI Nursing, assessment for this due in a few weeks.

A CHC assessment was undertaken back in March. We discovered, from the CCG yesterday (having heard nothing) that the case had been closed by the team dealing with it due to lack of evidence back in July. They had asked the team for evidence and we provided what we had eg notes going back a few years to show how she was deteriorationg. Obviously we cannot provide nursing notes as she lives with us! The team did not inform us that the case had been closed, only that it had been declined (this news came some weeks after the case had been closed) and though we then asked for written confirmation of this in order to appeal, this was not going to happen. We had fully expected not to receive funding (though we think she should get it and would have appealed), but wished to go through the process in order for us to understand why it was being declined. Does anyone have any thoughts on this please, and in such as case as ours, how can the correct evidence be found? MiL has no other illnesses, just has a diseased brain causing all manner of problems. This is the second application that has ended in this way, and we are not told the whole truth.

Would appreciate your thoughts on any of the above

 

[Hair Twiddler]

Oh Connieonny,
I do remember some of your earlier posts and the difficult times you have had. You really are going through the wringer aren't you. Sorry I have no insight into homes or procedures but I just wanted to let you know that people do care and hope that you get plenty of advice to help you in the hard decision times you have ahead. Take care - Twiddler x

 

[nitram]

"... how can the correct evidence be found?..."

You may already have some of the evidence.

The interpretation of the word 'evidence' is crucial.

Statements like 'last night she....' or 'on most nights she...' should be replaced by 'on Sat 10/08/13 at 3.45 am she...' and should be referenced to an event in an attached log. You can also add that this event is typical of events a,b,c......in the same log.

 

[connieonny]

Thanks to both for replying.
Our notes were asked for at one stage, and we offered to give other 'evidence' but the team thought this unnecessary and as I say, the CCG determined to close the case with no further evdence forthcoming from the MDT. The person I spoke to yesterday at the CCG intimated that although our 'evidence' istaken into account, this wasn't actual nursing evidence. They want sleep charts, Drs reports, respite reports, day centre reports and the like. Unfortuantely we visit the GP infrequently, though when we do my wife also writes to him detailing the reason for the visit, and day centre have no problems because she is with others all day and kept busy ...etc. Different story at home of course! We are left feeling as if they do not believe us.
Really we wish to gauge if it is worth expending more energy on this when we are so tired and also dealing with finding Homes. I believe that this is what they want, for us leave it, but there is no doubt that MiL is very sick.
What do you think?

 

[nitram]

"...Really we wish to gauge if it is worth expending more energy on this when we are so tired and also dealing with finding Homes. I believe that this is what they want, for us leave it, but there is no doubt that MiL is very sick.
What do you think?..."

What kind of scores do you get using:-


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


https://www.gov.uk/government/uploa...upport-Tool-for-NHS-Continuing-Healthcare.pdf

 

[connieonny]

severe x2
high x3
mod x1
low x4
none x4

severes are for behaviour and cognition
highs for psychological/emotional, communication and drugs

Thanks Nitram

 

[nitram]

On those scores I'd say it is worthwhile persisting.

Try and get some factual evidence on behaviour, is there a CPN involved, what about a statement from the home that refused to take her?

You say she is due for an assessment for an EMI nursing place soon, get the name(s) and position(s) of the assessor(s). See if they will give you any opinion.

Also bear in mind that if the panel on a DST are undecided they have to settle on the worse of the two grades in any domain. This may be in the links I gave but if not it's elsewhere.

 

[connieonny]

Thanks again Nitram. Our feelings exactly.
One further question. Given that come October she may well be in a nursing home, or at the very least an EMI residential Home, are we better waiting for them to do the CHC assessment (now have no faith in the CPN who has been telling us porkie pies) once in the Home, or ought we persist from here regardless of where she may go?

Is the CHC assessment done as a matter of course at the same time as assessment for admittance into a Home?

 

[nitram]

I'd wait till she is in the home, leave it a week or so and then talk to management saying that you are going to apply for CHC and see what they say.

Meanwhile I'd carefully document as much as you possibly can and also study the links I posted in detail and any other documentation you can find. Also contact AS either locally or nationally for guidance.

If she is admitted as residential there is no automatic assessment for CHC.

If she is admitted as nursing the home will expect to get ~£108 further nursing care (FNC),this is paid direct to the home and not usually discounted from the fee if you are self funding. The correct why to ascertain that FNC is to be awarded is to do the same checklist as for CHC decide that the scores do not warrant a DST and come to the conclusion that FNC should be given rather than CHC. I don't think this is always formally followed and it may well be done without your knowledge, it may even be the assessment for EMI nursing that you mentioned.