CHC (Continuing Healthcare) support thread

lemonjuice

Registered User
Jun 15, 2016
1,534
0
England
Hi, wonder if someone can please tell me, what actually gets sent to the CCG for the final decision on CHC. It's just the hospital have sent me one filled out at the meeting, which i attended, although some levels have been changed and also my name has been signed by someone else, in the assessors box.
I'm just trying to find out, if i have the one completed at the meeting, then what do they send to the CCG as I thought it would be that.
Sorry if this has already been asked, New to all this and slowly gong through this very helpful thread.
The hospital said my father didn't score enough to get CHC but would get FNC. He will be going to a Nursing Home for 24hr care when discharged from hospital and I am building a case for appeal.
Thank you for any help received.
I have no idea what 'documentation' goes to the Primary trust panel, but I do know that my mother's case went 3 times 'to panel' and was rejected each time. (Dealing as I was with ailing elderly in-laws as well the assessment always seemed to coincide with an emergency and as there is a time limit on appeal, each time I didn't get myself organised in time.

Even last August,when my mother was bedbound, doubly incontinent, completely dependent on others to 'anticipate her needs. because she'd lost the ability to talk or even comprehend, unable to reposition herself, losing weight because she was struggling to swallow and had even her drinks thickened, regular episodes of unconsciousness / tias/ seizures in the past 3 months, apart from her ongoing heart disease and episodes of breathlessness and I applied for a Fast Track Assessment I was told my 'mother wasn't a suitable candidate' because it wasn't certain she was nearing the end or in her last 6 months of life.:rolleyes:

It's all about lack of finances in the NHS. Most of us gain NFC but very rarely do people get awarded CHC., though there are one or two on here who have been awarded it.

So do try. Get a case together for a appeal- you will need masses of 'evidence' and much patience, but be prepared to have to settle for FNC
 

Louise7

Volunteer Host
Mar 25, 2016
4,774
0
It's just the hospital have sent me one filled out at the meeting, which i attended, although some levels have been changed and also my name has been signed by someone else, in the assessors box.
.

Have they sent you a copy of the 'checklist' or the much longer 55 page Decision Support Tool (DST)? It sounds like you just have the checklist as that contains a box titled 'assessor'.

The way the process is supposed to work (as per the National Framework) is that an initial checklist is completed and if this indicates a primary health need a multi-disciplinary team (MDT) meets to discuss the care domains in more detail. This team should include doctor, social worker, occupational therapist etc, and the person who is subject of the DST (or their representative) should also be given the chance to be involved in this process.

In my Mum's case I was told at the checklist stage that Mum would qualify for FNC, needed a nursing home, and would have to remain in the hospital until a placement was found and this was likely to take at least 3 weeks because most of the social workers were on holiday. As this decision had been made prior to any MDT meeting, and without input from myself, I queried this. I was informed that information had been taken from my Mum's notes and gathered from various individuals and that no MDT meeting had taken place as that was not the way they did it.

I requested a copy of the DST form and was surprised to see that this was not fully completed or dated, contained no details of the members of the MDT involved in the decision, contained extracts which appeared to be cut and pasted from someone else's form (my Mum was referred to by a different name and also as 'he'). The form stated that Mum had been suffering from an infection which had caused delirium and as the infection had been treated and the delirium had persisted she was unlikely to recover (2 doctors confirmed that she had had no infection and had therefore not been treated for an infection). It stated that Mum was largely bed-bound, doubly incontinent and needed 2 people for her personal needs. At that time she was walking up and down the ward and I was taking her to the toilet without needing any assistance. Two days earlier the doctor had told me that Mum was well enough to go home (making no mention of delirium). The form was also ticked to indicate that I had been offered an opportunity to be present when the form was completed. This was not true.

Apologies for the lengthy response but this demonstrates that the National Framework is not being followed in some hospitals and discharge teams are cutting corners, in an apparent attempt to free up beds. In my Mum's case she did not need a nursing home and was nowhere near as bad as stated in the DST form yet was awarded FNC. However the contents of the DST form meant that she remained in hospital for a further 6 weeks after being deemed fit for discharge and continued to get more agitated and distressed the longer she remained there.

As a consequence, someone who was happy at home, managing with 3 carers a day, going to day centre twice a week and was some way off needing a nursing home is now in a care home and having to pay a huge amount of her own money for care which she would not have needed had she not been kept in hospital for so long. I told the doctor that I thought it was the hospital environment that was making Mum worse. He replied "wasn't she like that before she came in then?"

If you don't have a copy of the DST form request it as I think it is this which goes to the panel as it contains a section showing the MDT recommendations. In my Mum's case this stated that she was eligible for FNC and required a home where staff are "fully trained in dementia and Parkinson's care". She does not have Parkinson's.

Interestingly, I have just been given an appointment for the 3 month review meeting of Mum's FNC entitlement. That might be interesting!
 
Last edited:

Mrnkar

Registered User
Oct 28, 2017
25
0
Sorry Louise you send your reply while I was writing will read it now
Thank you for that. Yeah in process of getting all medical history documents, hospital admissions etc together as even in there own assessment they have conflicting stories ie in the summary it reports he is non compliant with food, fluids, care etc, but scored him as low need and have put normal diet & fluids currently. A DoLS was imposed on him 3 days before the assessment for exactly that reason. He also suffers from Dysphagia on occasions and it has occurred once again in his present stay in hospital.

In the listing of assessments & key evidence taken into account in completing the DST there are only 4 documents listed, all provided by me at the meeting, which was all I could manage to get together having only 5 days notice of a DST being completed. They wanted the meeting basically the next day but I couldn't make it any earlier. Not sure if or when a checklist was fine but had no knowledge of it. Surely there should be some from SW or his Care Home as 2 Social Workers were present at the meeting, his care home one and a hospital one.

My belief is they had more or less decided before meeting he wasn't entitled to CHC, why? I was given an assessment form, as we're all the other attendees at the meeting, the levels were already pencilled in and just happened to be the level that was decided at the assesement. I think I took them by surprise providing medical evidence specially one from a consultant saying how concerned he was about the recent decline in his health.

I know this isn't going to be an easy battle from what I have been reading, but i will not give up on it until I get justice.
 

Louise7

Volunteer Host
Mar 25, 2016
4,774
0
My belief is they had more or less decided before meeting he wasn't entitled to CHC, why?

Cost seems to be the reason for this, although it seems easier to get CHC in different parts of the country so it's a bit of a postcode lottery. At least you did better than me and they actually held an MDT meeting and involved you! Best of luck with your appeal.
 

Mrnkar

Registered User
Oct 28, 2017
25
0
Thank you. O but that's not the whole story and something else I'm in the process of trying to find answers out to, now that I know the way things are supposed to be done.
Long story but my father was in hospital for 16 weeks this year before being forced into to a care home without my knowledge, as, as far as I was made aware the home was only coming to the hospital to access him, but he was removed from hospital the next day. This home was totally unsuitable for his needs, and had problems with him from the start. I live abroad & no other family in England, but have a friend who sees to his needs etc.
I don't even know if a CHC assessment was carried but when enquiring about it and have an email to prove it, was informed by a Social Worker. THERE IS NO FREE CARE ANYMORE.
The care home are pursing me for money but my father refused to sign anything ie agreements, contracts etc to the home. As he is deemed to have capacity (that's another grey area) I have no authority over him
I would add my dad was just diagnosed as having Vascular Dementia in Sepember but there had been a query for years over Lewy Body Dementia.
He has many other ongoing health problems not related to that.
 

Greenfly

Registered User
Oct 29, 2017
11
0
As if there isn't enough to worry about you then have this and all the legal side of it all it just seems to be more treacle after more treacle
 

John"s Daughter

Registered User
Jan 7, 2016
3
0
Hi everyone,

Any advice gratefully received. We have been caring for my dad, who is 95 in a couple of weeks, in his own home for nearly 10 years since he had his stroke and subsequent dementia. At first we coped alone, then with the support of carers during the day and now, for nearly 2 years, with the support of a fantastic live in carer. This has been financed, in the last 2 years, by a direct payment from the LA, with a contribution from Dad and a top up from us. It has all worked very well and Dad has had first class care and had his wish of being where he wants to be until he dies. Recently Dads health has been getting much worse, he is increasingly getting seizures which are having a devastating effect on him. After the last one, on the 17 October, he no longer recognises us and doesn’t talk at all, unless you ask him a simple question where you get a mumbled reply. Dad has been on purreed food and thickened drinks since December 2015 and is hoisted from his bed to chair, commode etc. I called the GP in after the last seizure to review his treatment and we subsequently did a fast track assessment for funding as we were finding it difficult to cope with just us and the carer - we all work and we can’t afffoed to top up financially, any more than we do now. We have heard yesterday that NHS finding has been agreed for the next 3 months when it will then be reviewed however they said we couldn’t keep our wonderful carer who we employ directly. We are challenging this as she is fundamental to dad’s care. She knows him so well and can anticipate everything which he can no longer articulate such as toiletting needs, when he might have a seizure so making sure he is safe etc. I have looked on line and it looks as though there is something called a personal health budget which can be used to fund the care that you want and that the NHS needs to give you reasons why they won’t give it to you so that we can challenge etc, I just wondered if anyone else has come across this? What we are asking for is extra agency help as and when it is needed. Our directly paid carer is far cheaper than agency - and in our opinion of far superior quality - so would also be a far cheaper option anyway. Grateful for any advice anyone might have.

Many thanks
 

malengwa

Registered User
Jan 26, 2017
258
0
Advice anyone? I went to visit mum today who is at end of life. But I was still surprised to hear mum was awarded CHC from 23 November. I'd been waiting for an invoice as mum hasn't been in the NH long. So, am I right in thinking her attendance allowance stops now. I suppose I'm a bit worried as another member here got fined for not telling DWP. I didn't know until today. Obviously if I'm fined then I am, it's the least of my worries at the moment just wondered.
 

nitram

Registered User
Apr 6, 2011
30,230
0
Bury
You are OK.
AA stops after 28 days.
Tell them that you have just been informed that she was CHC funded from 23 Nov.
 

lemonjuice

Registered User
Jun 15, 2016
1,534
0
England
I was still surprised to hear mum was awarded CHC from 23 November. I'd been waiting for an invoice as mum hasn't been in the NH long. So, am I right in thinking her attendance allowance stops now.
Well done for getting the CHC malengwa.

Yes you wil need to inform them of the new circumstances, but doubt they'll do anything other than reclaim any 'overpaid' money. It depends on whether it's paid in advance or arrears as to whether there is.
 

nipper

Registered User
Dec 27, 2012
28
0
hertfordshire
My wife who has dementia and is in a nursing home was receiving DLA (mobility & Care) as at the time we were self funding. In November last we were awarded CHC (after an appeal). Soon after we received a letter from DWP saying that DLA was ending and we should apply for PIP. we were awarded PIP but as the care costs were being paid for only the mobility element was then paid - all this accepted. My question is should the mobility element of DLA be paid once the care costs are paid for (as is the case with PIP).

I have spent ages today on the phone to DWP and have been told different things so I want to find out out exactly what the situation is as they are requesting that an overpayment be paid back. Thank you.
 

nitram

Registered User
Apr 6, 2011
30,230
0
Bury
I have spent ages today on the phone to DWP and have been told different things so I want to find out out exactly what the situation is as they are requesting that an overpayment be paid back.

DLA to PIP with CHC being thrown in is a complex area.

Try contacting the AS helpline, which is staffed by people with the knowledge and experience to advise you.

2017-12-05_203429.png
 

Redbutterfly

Registered User
Mar 8, 2015
11
0
West Sussex
My mother is dying and is now just taking sips of fluids and has regular doses of Oramorph. I have looked into NHS CHC funding, as was told by the hospital in mid-December 2017 that she is now end of life and has weeks, maybe months. The care home managers came into the hospital to do an assessment of needs so that she could be returned to them for end of life care. A discharge nurse (in black uniform) said she would commence the procedure for this funding. I have spoken to Mum's GP who said that we couldn't fast track an application as there is no diagnosis. We tried to get a diagnosis, as told dementia diagnosis doesn't count, by having an emergency ultrasound done locally, as there was a palpable mass in lower abdomen. The ultrasound just showed some pleural effusion and mass not visible as we couldn't get Mum to keep a full bladder. We're not getting anywhere and it is all so harrowing at the moment, so thinking of applying for this CHC funding retrospectively. Has anyone any experience of doing this and any advice?
 

malengwa

Registered User
Jan 26, 2017
258
0
Hi redbutterfly, my mum got CHC fast tracked and I didn't even know the NH had applied. But I think what swung it was a 'complicated catheter' and her lung and 'other unknown mass' cancer.when she was in hospital and then assessment bed, they told us she didn't have a hope in h*ll of getting CHC. But then she did continue to deteriorate rapidly.
It all seems to depend on the skill and knowledge if the staff.
Lots of people with more experience than me but I didn't think a specific diagnosis was relevant for CHC, I thought it was more about mums responses across the criteria?
as it happens my mum died 2 weeks later, so all our worries about fees and how long she could pay them etc never came to be.
 

Redbutterfly

Registered User
Mar 8, 2015
11
0
West Sussex
Thank you Malengwa, for your reply. It seems a little like a postcode lottery and luck of the draw. I'm going to ask a few more questions. I know that the hospital said they would start the application. The care home and local GP also know that we would like to apply for NHS CHC - even if it is the slowtrack way. I would just like to know that the application has been started.

We have no worries about paying the fees, as would have to use the sale of the house proceeds if Mum continues for longer than a year. It is really the principle that Mum has never claimed anything in her lifetime, but so far we have self-funded to the tune of £70,000, including care in her own home. If we can get the funding that's fine, but I'm just going to concentrate on Mum for the moment in her last days. I'm just going to make sure the claim is lodged and sort it out later.
 

la lucia

Registered User
Jul 3, 2011
592
0
I've just been given 2 working days notice to prepare for the DST meeting. When I queried this I was told that I didn't need to do anything or prepare because 'it's based on the notes from her current hospital stay'.

I then requested a copy of the checklist. Not only did they ignore the section that refers to: "was a representative such as a family member offered the opportunity to be present when the checklist was completed?" [no I wasn't] but they have scored my mother a C for cognition [she is most definitely an A] but I would argue the same for other domains too.

Her mobility is now variable - we never know from one hour to the next whether she can weight bear or not. She needs either a frame plus 2 to transfer or a hoist. She's also a high falls risk. And has had a stroke and a broken hip due to falls. She needs to be told to move each foot individually when she does weight bear but then with no warning her cognition fails and she loses the ability to weight bear.... She tips backwards.

Because we've been independent and are self-funding, I need time to get reports from various sources. For instance my mother has TIAs there's been 2 paramedic visits as a consequence after which we agreed that I would handle them. I know that the paramedics sent notes about this to the GP but I am unlikely to be able to get hold of them in 2 days.

There's no sense of the interlinked nature of things - ie her cognition is so poor it needs a lot of cleverness to get her to eat teaspoons of food. She regularly refuses and clamps her teeth down on the teaspoon or even my finger. They’ve written that it takes up to half an hour to feed her when even the ward sister said in the MDT meeting that it takes over an hour. She's a nightmare for food and liquid and they've already acknowledged that if she becomes dehydrated at home that's that... Nothing more to do but let 'nature take its course.'

They've found it so difficult to get fluids down my mother that she has been repeatedly put on an iv drip. When she's dehydrated she becomes totally impossible, aggressive and non-cooperative. And unable to weight bear. She's on stage 2 thickened fluids and pureed food.

There's more but right now I really need opinions on whether 2 days for me to prepare is legal please?
 

nitram

Registered User
Apr 6, 2011
30,230
0
Bury
Forget about your non attendance at the Checklist and the scores given.

You are now at the DST stage where everything is reassessed in detail and you can submit any your views, backed up by as much evidence as you can collect.. Concentrate on domains that can be graded at S or P, other scores are of little consequence unless you have a complex and evidenced argument

Regarding the notice, the only reference to the person or their representative attending is on P 9 of the DST

10. The individual should be invited to be present or represented wherever possible. The individual and their representative(s) should be given sufficient notice of completion of the DST to enable them to arrange for a family member or other advocate to be present...
.
https://www.gov.uk/government/uploa...ile/528272/Decision_Support_Tool_Amended.docx

In https://forum.alzheimers.org.uk/threads/chc-application.106462/
you asked
Is 2 days advanced notice legal for attendance at the DST meeting? They say it has to be done before my mother leaves hospital next week. Why?

The result of the DST will influence the discharge care plan if FNC or CHC is granted.
 
Last edited:

la lucia

Registered User
Jul 3, 2011
592
0
Forget about your non attendance at the Checklist and the scores given.

You are now at the DST stage where everything is reassessed in detail and you can submit any your views, backed up by as much evidence as you can collect.. Concentrate on domains that can be graded at S or P, other scores are of little consequence unless you have a complex and evidenced argument

Regarding the notice, the only reference to the person or their representative attending is on P 9 of the DST

10. The individual should be invited to be present or represented wherever possible. The individual and their representative(s) should be given sufficient notice of completion of the DST to enable them to arrange for a family member or other advocate to be present...
.
https://www.gov.uk/government/uploa...ile/528272/Decision_Support_Tool_Amended.docx

In https://forum.alzheimers.org.uk/threads/chc-application.106462/
you asked


The result of the DST will influence the discharge care plan if FNC or CHC is granted.

Thanks Nitram but I can't possibly get all the evidence together in that time because it's going to require copies of medical records and tracking down a Consultant Psychiatrist. [Someone on this thread I recall said evidence is key].
They've already put in place the discharge care plan for the end of the coming week.
I'm going to have to swot like mad but it's thrown me that I won't be able to accumulate the evidence materials. Any suggestions please?
 

nitram

Registered User
Apr 6, 2011
30,230
0
Bury
Evidence is key.

I've just been given 2 working days notice to prepare for the DST meeting. When I queried this I was told that I didn't need to do anything or prepare because 'it's based on the notes from her current hospital stay'.

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 '...........'.