Mum has been awarded CHC funding

[Contrary Mary]

After Mum was in hospital (came out 27th September) and I wondered at one point if she would have to go into care, my lovely SW decided to do the checklist for CHC. On 9th November she and the nurse came home to do the DST. I had my notes at the ready, together with copies of correspondence from CMHT, SALT, hospital discharge. The nurse said that, because Mum does not have visits from District Nurse or whatever, it is a little more difficult to “prove” a case but it can be done. The first thing that she said, though, was to tell her what happened on a BAD day. So I did!

We went through the domains. I can’t remember all the details. I think Mum got high for cognition and communication. However, the overall picture remained of a woman basically unable to do anything for herself. The nurse totally agreed with the sentiment that a well managed need is nevertheless a need.

Today, having one or two things I wanted to get sorted about Mum’s care (still at home), I rang to see if any decision had been made and I was told that CHC had been granted.

I can’t say that I feel particularly elated. Sad that I will not have my good SW to support us. Sad in a way that it has been quite easy for us when others struggle to get the help and support they need and deserve. And very sad that my lovely Mum is now so ill, and her illness acknowledged, that she qualifies for CHC.

Now I am just waiting for a meeting with the people to discuss Mum’s ongoing care.

And of course the search for good quality care still goes on.

Mary
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[Bob S]

It's a weight off your mind though Mary, not having to worry about the funding of the care package. But be prepared for an attempt in the future for the decision to be reviewed and efforts made to reverse the decision.

 

[Contrary Mary]

Thanks, Bob. I don't know that it will save an immense amount of money as of course the first thing to go will be the attendance allowance. Also, as Mum is at home I don't know how the NHS view the distinction between services for the cared for and for the carer. At present, Mum goes to a day centre and I also have a sitting service. These things are essential for me as I am the only family carer. I shall have to try and look back on Nan's threads to see what happened when Brian got CHC. Unless anyone can shed any light?

 

[Pheath]

Please how do they assess whose eligible for CHC funding and is it means tested? Even though dad is mobile he also can't do anything for himself anymore. We never seem to qualify for anything as dad has more than the £23k threshhold of savings. thanks,

 

[Nannybus]

My mother could do nothing. She had to be fed, changed, turned, and she could not speak. She also had terrible skin viability, with the skin splitting everytime she was moved. She was on an air mattress and the carers were forbidden to remove her from the bed. She was like this for four years. The last year saw many instances of breathing problems, but still she was denied Continuing Care.

I protested often, but it fell on deaf ears, until the last week of her life, when the DN said she would fast track her assessment. Nothing has been heard since, I should imagine the LA is relieved that they have avoided yet another payout.

 

[Bob S]

Please how do they assess whose eligible for CHC funding and is it means tested? Even though dad is mobile he also can't do anything for himself anymore. We never seem to qualify for anything as dad has more than the £23k threshhold of savings. thanks,

The NHS fund continuing care and because of that it is totally free with no means testing. The £23k limit is in relation to fuinding by the local authority.

The way they are supposed to assess is described in a document called the National Framework, but the way it is assessed in practice is very much a post code lottery. My personal feeling is that some PCT's still assess under the old criteria they used to use and then it is written up to make it look as if they have used the National Framework.

 

[Bob S]

My mother could do nothing. She had to be fed, changed, turned, and she could not speak. She also had terrible skin viability, with the skin splitting everytime she was moved. She was on an air mattress and the carers were forbidden to remove her from the bed. She was like this for four years. The last year saw many instances of breathing problems, but still she was denied Continuing Care.

I protested often, but it fell on deaf ears, until the last week of her life, when the DN said she would fast track her assessment. Nothing has been heard since, I should imagine the LA is relieved that they have avoided yet another payout.

Sadly another example of how someone who appears to have obvious health needs but is denied their funding by petty bureaucrats doing their utmost to avoid their legal responsibilities.

 

[Pheath]

Yes, from what I gather it does rather seem to be a postcode lottery. Nannybus, I can't believe your mum didn't qualify - what an ordeal to endure for 4yrs.

 

[Contrary Mary]

I totally agree that some of the stories you hear are horrifying, and I don't see any change while budgets are so stretched. Despite any assurances to the contrary, care seems to me to still be very much a postcode lottery.

 

[Contrary Mary]

Update

Two interesting points I have discovered on reading further.

The assessor came on Thursday to discuss the care plan and they are happy for Mum's care to continue as at present,although I think they may not be quite so generous as to time allowed. Following on from what the assessor said, I researched respite for a carer of a person living at home receiving CHC. Although I got the impression that the PCT might fund some residential respite if I wanted, it seems that, in general, the LA is still responsible for carers' services.

I had also been led to believe that Mum would lose her attendance allowance. It appears that this might not be the case after reading Age UK's factsheet. The girl I spoke to at the AA unit didn't know for sure and I am expecting a call back from them.

 

[Coletta]

This is very interesting Mary, as I had been wondering the same about respite. MIL has been awarded CHC recently and,ourselves having been awarded 6 weeks respite in August, (but not having heard anything since or received any direct payments) was wondering if we would still be eligible for respite now. Im thinking about having a carer to take over the feeding/drinking for a few days as it is so very time consuming and tiring (and hard on the back), but remaining at home.

I didnt know about the possible loss of Attendance Allowance when caring at home and will be interested to hear the outcome. Do we have to notify the DWP or is this done automatically?

Coletta xx

 

[Marina1974]

Hi -

what is CHC funding and who would be the best person to talk to about it for further information?

 

[mowood]

My mum received NHS Continuing care funding for the last 3 years of her life. I cared for her at home and during the last 6 months I had 24 hour help from a team of agency care assistants - all paid for by the PCT. Mum retained the higher rate of attendance allowance throughout.

During the last 6 months of my mum's life when her needs were becoming greater - in that she lost her mobility, was non-compliant with medication either at home or in hospital and became increasingly violent - the PCT tried to say that she no longer met the criteria for Continuing care funding. It was all clearly down to money and we had to fight long and hard to retain the funding. Quite disgusting really.

It must be a relief to you Mary to have the funding taken care of at the moment but as Bob says, be prepared for the decision to be reviewed after 3 months. I wish you well in finding good care for your mum.

 

[Coletta]

what is CHC funding and who would be the best person to talk to about it for further information?

Hi Marina

You can read all about it if you google Continuing Health Care forms.

In our case, MIL was in hospital recently. The discharge nurse completed the form and we heard a couple of days later that mum got it. We didnt have to do anything ourselves. Reading TP, CHC funding is hard to get. I have read others' stories and been amazed that people were told they were not eligible.

Coletta xx

 

[Izzy]

I'm glad your mum has been granted CHC Mary. I hope things go well for you. I thought that your SW's point was a very good one : 'a well managed need is still a need'.

 

[Bob S]

Hi Marina

You can read all about it if you google Continuing Health Care forms.

In our case, MIL was in hospital recently. The discharge nurse completed the form and we heard a couple of days later that mum got it. We didnt have to do anything ourselves. Reading TP, CHC funding is hard to get. I have read others' stories and been amazed that people were told they were not eligible.

Coletta xx

Coletta,

You are very fortunate that it has been granted without having to fight tooth and nail for it. But it shouldn't have to be hard to get it for those who meet the criteria. The simple test is if they have needs comparable to Pam Coughlan. If a person does then it should be straightforward, but too many PCT's ignore cook the books on continuing care. It's just another example of what to me appears to be institutional contempt shown towards the elderly by the NHS.

 

[Coletta]

Hi Bob

Yes, I realise we have been very fortunate and couldn't agree more. Not only did we get the funding, but also great support at home which was all organised by the hospital. It angers me that it doesn't seem to be the same wherever you live. I was very upset by Nannybus' story which I was reading when the district nurse just came in and showed it to her. She couldn't believe it either.

I don't know if it made any difference, but when the discharge nurse mentioned applying for the funding, I asked to see a copy of her report and did actually mention Pam Coughlan, information I had gleaned on TP from somebody's very long and complicated posts recently whose name I cannot remember.

Coletta xx

 

[Contrary Mary]

Hello Coletta

When I discussed personal care with the nurse on Thursday I said that Mum got personal care through SS as, in our borough at least, it is beneficial as Mum has two carers and only effectively pays the majority of the cost for one. However, I told her that one of the regular carers was very good at feeding Mum (and they don’t all have the skill) and therefore when she is working I pay for her to come in the evening to give Mum her meal. I was told by the nurse that the PCT should (fingers crossed as nothing in writing yet) fund this as well. It is a very time-consuming job, isn't it. I won't tell you what I thought of the home who told me Mum would be given 20 minutes to eat her dinner.

The only sticking point at the moment is the day centre. Reading Nan’s thread several months ago I think the PCT should fund this as a service to Mum but I am waiting for confirmation. As regards the sitting service I have, SS have been aware for months that I pay for this but my carer’s assessment has never really been finalised. Still, CHC does now appear to be saving quite a bit and I have to pick my battles.

I haven’t posted much on your threads, but often think of you as we seem to have problems in common. I hope you are having a reasonable day.

Mary
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[Contrary Mary]

Hello Marina

Welcome to TP. I think your question has already been answered. I do hope that you find TP as valuable a source of support and information as I have.

Mary
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[Contrary Mary]

Hello Mowood

I wish you well in finding good care for your mum.

Yes, that is the crux of the matter for me. I seem to recall it was you who had some very bad experiences with the care agency provided by the PCT.

Two good things. If Mum should need residential care (and this would be a last resort as Mum is notorious for not drinking away from home) the homes on my “shortlist” would all be funded by the PCT. Secondly, we are staying with the same care agency. Not that I am so keen on the agency as they have an over-zealous attitude to elf ‘n’ safety. But we do have some very good carers, although they are hamstrung by what they are not allowed to do, and I am always fearful that they will get fed up and leave.

I am surprised that Mum should keep her Attendance Allowance. Although she will still have “accommodation costs” being at home, Attendance Allowance is, in theory, a contribution to the cost of personal care. Well, there will not be any cost to us as it is now funded by the PCT. Seems that the Government is paying twice over (although £73.60 pw does not go very far, does it.)


Mary
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