CHC (Continuing Healthcare) support thread

[lemonjuice]

I have to say my mother's condition was far, far worse than yours, at the stage where we'd even decided not to administer antibiotics and she was still refused.

The number of times I was present at the assessment and protested and contradicted their assessmets, only to find the scores were unchanged and no mention of my opinions, so I'm not sure that having any extra time would necessarily benefit you.

They may well have made up their mind after her stay in hospital and the assessment may just be rubber-stamping their decision.

 

[la lucia]

Evidence is key.



It looks as if they are going to argue that the stay in hospital enabled several professionals to assess her and base their decision on relevant records.

Sometimes they refuse to accept short stay hospital notes saying that these relate to an acute phase and are not representative of the person's true state.
In wanting to use the notes have they already decided the outcome?

Try and get as much info from the hospital as you can, don't present it verbally, 'X told me...', have it written down to present as evidence, ' on <day/date> at <time> when discussing <........> X said '...........'.

Thanks Nitram, yes, I'd already decided that I will present our case with written examples of everything (I'll print off copies to issue to the others present).

I guess I could point out exactly the location of documentary evidence/professional involved etc?

ie: for reference to the TIAs there were paramedic visits and they gave me the confidence to deal with them myself and so I no longer have to call for help. They sent details of what they had told me to my mother's GP electronically. They did this in front of me so I know it exists. But I will never be able to get hold of it by Wednesday.

I'm wondering if this is a box ticking exercise (but that maybe because we had a bad experience about 8 years ago with the same hospital and LA when my father was dieing. And I'm a bit cynical).

I think I need to emphasise the complexity and interlinked nature of the domains.

They're using iv fluids to hydrate her and that is not possible outside of a hospital. They've acknowledged that I'm going to be up against it with hydration and nutrition, she already scored A for cognition but without hydration she becomes obstinate and it's impossible to get sufficient fluids and nutrients down her. But they only gave her a B for the Nutrition domain.

She bit my finger a few days ago when I was trying. She clamps her teeth shut to block feeding and drinking. She was put on the iv because I lobbied for it as a means to assess what's what. Sure enough, hydration improved her and it became possible to encourage her to sip thickened fluids from a cup and be fed small amounts of pureed food.

In other words, they're assessing a 'managed need' in hospital. They couldn't get anything down her until the iv was introduced.

Plus she's definitely unpredictable - you never know how she's going to be from one day to the next. Cognition and nutrition and some of the other domains are totally interdependent for my mum.

Sorry, I'm probably going to drive everyone mad with questions these next few days but despite the difficulties I have to try and give it my best shot.

Can I ask for copies of her hospital notes? I have POA for health and welfare.

 

[Louise7]

Can I ask for copies of her hospital notes? I have POA for health and welfare.

You can ask but it takes a few weeks to get them, and you'll need to contact the hospital records department / access officer and fill out an application form. I could view the records or get copies and initially I viewed but they advised they could only provide up to 5 photocopies of docs during a viewing, so I have requested copies of all the notes (and very interesting they are too!). The charge was £50 but worth it based on the content. I also have POA for health & welfare but they didn't accept this and asked for written permission from my Mum and also copies of her photo ID. I typed up a letter and Mum put a squiggle on it.

 

[nitram]

Can I ask for copies of her hospital notes? I have POA for health and welfare.

Yes
https://www.nhs.uk/NHSEngland/thenhs/records/healthrecords/Pages/what_to_do.aspx#

For a formal request there may be a fee - scroll down to 'Do i have to pay....'

 

[la lucia]

You can ask but it takes a few weeks to get them, and you'll need to contact the hospital records department / access officer and fill out an application form. I could view the records or get copies and initially I viewed but they advised they could only provide up to 5 photocopies of docs during a viewing, so I have requested copies of all the notes (and very interesting they are too!). The charge was £50 but worth it based on the content. I also have POA for health & welfare but they didn't accept this and asked for written permission from my Mum and also copies of her photo ID. I typed up a letter and Mum put a squiggle on it.

Oh hec.. I need them by Wednesday. But I wonder if I can have a copy of the notes from her current stay? I would have kept my own records if I had known we were going to be facing a CHC attempt... .. I'd happily pay.

 

[nitram]

But I wonder if I can have a copy of the notes from her current stay?

Take a camera with you to copy any you can get a look at.

Practise taking an image of a screen.

 

[Louise7]

Take a camera with you to copy any you can get a look at.

Yes, that's what I did when Mum was in hospital - I took a photo of the notes at the end of the bed with my phone. They were quite limited in info though so might not give you the info you need for the DST meeting but worth a look.

 

[la lucia]

Take a camera with you to copy any you can get a look at.

Practise taking an image of a screen.

The problem is that they only keep the last couple of days in the folder. I believe that the rest are in the office. I'll try and photo what I can and then I will just ask.

I was given the folder to study in a different hospital by asking and waving my POA so fingers crossed that it will help.

 

[la lucia]

Yes, that's what I did when Mum was in hospital - I took a photo of the notes at the end of the bed with my phone. They were quite limited in info though so might not give you the info you need for the DST meeting but worth a look.

Deffo worth a look if only for the multiple pages of 'refusals' to eat or drink or get out of bed. And the temporary improvement when hydrated.

I'm kicking myself now because I should know better.... I'm definitely a screen-grab sort of person.

 

[Louise7]

I've had the opposite problem to you really in that the DST form made Mum out to be worse than she actually was (parts had obviously been cut & pasted from someone else's form!). If I'd been involved in the DST assessment/form completion process I'd have been able to point out the errors but it seems that no DST meeting actually took place.

 

[la lucia]

The DST meeting was supposed to be this afternoon while my mother is still in hospital. They've moved it to Monday after my mother has been discharged this coming Friday.

How the hell am I supposed to get cover for looking after my mother? If I do find someone to look after my mother it's going to cost me around £45......

Grrrrrrr.........

 

[la lucia]

Take a camera with you to copy any you can get a look at.

Practise taking an image of a screen.

Great advice - I've now done some of this and I have now also received the Ambulance Service records of the TIAs and falls.

I discovered that some staff have been filling out the fluid charts retrospectively and I managed to photograph one that was blank and then filled out many hours after I had left the hospital. The pictures are time stamped. Mystically, my mother seems to have drunk a lot more that day than on other days......

 

[SueBrind]

Our experience suggests families need to be as proactive as possible (sorry about using the awful word) when it comes to CHC.

We weren't told about CHC as a possible option for Mum's care even though her Consultant said she had to be in a nursing home and was a high falls risk. The hospital hadn't done a CHC assessment of its own - they simply asked my naïve Dad whether Mum would be self-funding.

When I started to gather evidence for the CHC assessment meeting I discovered the nursing home hadn't received key information from the hospital that would affect their judgements of the care Mum needed, the construction of their Care Plan and indirectly the feedback they gave to the CHC assessor.

Even if a CHC assessor is good and impartial (not always the case), if they don't have the right information they won't make good decisions.

 

[Theresalwaystomorrow]

Quick question
Selfunding, if your a couple and one needs assessment on savings and between you there’s 23k in bank, does that go as 11.500 each or would they include £23k into assessment even thou half of that would belong to partner?
Thanks just wondering

 

[jaymor]

They will only take into account the assets of the person needing care. So assets in the name of that person and half of anything held jointly.

 

[Theresalwaystomorrow]

Thanks for info

So::: if the law changes
(which I genuinely think there is going to be some big changes for Alzheimer’s )

If say they said 70k could be left in property, again would that be 140k left due to partners half ?

 

[Double_Trouble]

Hi all - a quick question.
My Dads first CHC meeting took place without any family being there - I'm NR and didn't receive any notification of when it was due to be, or an invite. I knew that there was one due, as the social worker told me at the initial meeting when he was admitted. Can I ask for the meeting to be re-run with me present ?
I'm trying to get in touch with the head of the local CHC; she called me yesterday and left a voicemail for me to call her back - no reply at all today - typical

 

[jaymor]

I would wait and see what she has to say. If the CHC has been taken away then you have questions to ask. If it has not then just ask that you are involved in all future annual assessments. I sat in with all of my husband’s annual assessments.

 

[nitram]

CHC is not means tested,it is granted on assessed medical needs, pensions are retained, even AA is not stopped if care is in a domestic environment.

You are referring to LA assisted care which is means tested and DWP pensions are subtracted from any finance given.

 

[lemonjuice]

have been told it is final and will not be looked at again for between 6 to 12 months so I contacted 7 care home to ask what I did to get the care she needs and was amazed at the answers that came saying Good luck but we have never had any one get CHC except with the one home who said there was a man got awarded it but sadly died before funding was given but it took them months to reply
but there are illnesses that cause end of life or palliative needs

This has been my experience. Even when my mother had reached the stage where no antibiotics were going to be prescribed I applied for an 'emergency assessment' for end-of-life and was refused because they said although she obviously was end-of-life there was no certainty that she would actually die within 6 months. She died about a month later.