CHC review, what a ***** joke!

Discussion in 'End of life care' started by Timeout, Feb 9, 2016.

  1. Timeout

    Timeout Registered User

    Feb 10, 2012
    Following on from my previous thread about Mum being at end of life we requested a CHC review for full funding as the consultant in the hospital recommended we try for it as he was discharging her back to her CH on a 'comfort only' basis. All medication for mum was withdrawn and she was sent back to 'die with dignity in her own surroundings' as his words.

    We had the report back from the CPN and am disgusted. Completely disgusted.

    She scored the following

    Behaviour - no needs. Bear in mind mum is often upset and aggressive when given personal care, her nails are dirty and uncut as they can't get near her to cut them without her being angry and agitated. She hates anyone touching her feet or legs. Some days when we visit she will be annoyed and refuse to even look at us. She hasn't been out of bed since being discharged from hospital as she shout and screams whilst being hoisted.

    Cognition - moderate. Mum has NO cognition at all. Cannot express any needs whatsoever, has no memory long or short term and cannot recognise anyone in the family. She is often withdrawn, has no orientation to place or time at all. She just simply exists. Says she needs help in choosing clothing SHES NOT BEEN DRESSED IN ANYTHING OTHER THAN A NIGHTIE SINCE DECEMBER

    Psychological needs - low. It says she is encouraged to take part in social activities. SHE HASNT BEEN OUT OF BED SINCE DECEMBER. She is often annoyed, you can see it in her face. She has mood swings and is different every time we see her. Sometimes happy, sometimes not.

    It says frequent hospital admissions, NONE. She had had 9 admissions to hospital in the last year.

    It says she requires SUPPORT in personal care. She cannot do ANYTHING for herslef and is washed in bed despite the report saying she is showered. They change her sheets by rolling her to the side as she gets angry and upset if hoisted? SHE HAS NOT BEEN OUT OF BED SINCE DECEMBER!

    Communication - moderate. Says she can answer appropriately to yes and no. Those are all the words she says and she CANNOT Answer appropriately. She replies yes if you ask her a leading question and responds to either a positive or negative tone of voice.

    Mobility - high. I think she should be severe. SHE HASNT BEEN OUT OF BED SINCE DECEMBER. She cannot weight bear and is starting to show signs of contractures.

    Nutrition - low. Says she requires support and encouragement to eat. She is hand fed puréed food and thickened drinks. She will not attempt to feed herself at all and cannot see anything that is in front of her. Her weight is dropping steadily having lost 7 kg in a month.

    Continence - moderate. Says she is toileted on request. SHE CANNOT SPEAK TO ASK TO GO AND DID I MENTION SHE HAS NOT BEEN OUT OF BED SINCE DECEMBER? She is doubly incontinent, wears pads that are left open underneath her. She suffers from either constipation or diarrhoea.

    Skin integrity - moderate. Tend to agree. She is on an air mattress and turned regularly. Shows pink areas on buttocks and back.

    Breathing - no needs. Have to agree.

    There is a list of medication that she's supposedly on but these were all withdrawn by the hospital consultant so that's incorrect.

    I'm so angry, so angry. She has had a better score than when they wanted her out of her last residential home as 'they couldn't manage her needs'. It's a joke. I didn't know dementia got better over time and the scores improved.

    I have requested a meeting with the social worker as this is unacceptable. Either the care home are lying about her or the CPN is. I want to get to the bottom of this.

    Any tips on how to deal with this? I'm sure we aren't the only ones that have experienced this.
  2. 2jays

    2jays Registered User

    Jun 4, 2010
    West Midlands
    I have to agree with your opinion of CHC....


    Apparently at lot of what you have highlighted are social needs not nursing needs..... So I was told at my mums CHC meeting

    :angry: :angry:

    Makes the blood boil until your ears sing doesn't it


    Sent from my iPhone using Talking Point
  3. notsogooddtr

    notsogooddtr Registered User

    Jul 2, 2011
    Sounds exactly like review for my Dad,still waiting for copy of decision tool but I was told at meeting that they judged there to be no primary health need.Cognition moderate/high,what a joke.I will try to summon up energy to appeal,you should too
  4. tigerlady

    tigerlady Registered User

    Nov 29, 2015
    Weren't you invited to the meeting? Were the care home representatives there and if so why did they underestimate her needs? Can you have access to the care notes (assuming they are correctly written up) to prove all the things they got wrong? If they cant manage her personal care due to her aggression, it is a need that is not being managed

    Severe in behaviour and cognition should be enough to qualify for CHC, and from what you say, she should have scored severe in these categories.

    I think also that you should appeal and attend and give evidence at the next meeting. I think it is fast-tracked if it is for end of life.
  5. LeedsLass

    LeedsLass Registered User

    Oct 13, 2014
    I agree with tiger lady. Get her GP to fast track her immediately for end of life care and then all fees should be met. It's so upsetting, wish you all the best.

    Sent from my iPhone using Talking Point
  6. Timeout

    Timeout Registered User

    Feb 10, 2012
    We haven't been invited to a meeting yet as it is the first stage nursing assessment that has been carried out and is all wrong.

    I spent 3 hours last night going through each domain in the checklist and writing all the points that I thought were incorrect. The review said she was out of bed and in the lounge but she hasn't been out of bed since December. Also there is a list of medication on there that mum doesn't take any more! So many things incorrect on there. Also, she had a review in October at her last care home and she now scores better for cognition than she did then but shes deteriorated considerably since then.

    Shes lost 20kg in weight in the last year too but nutrition was scored better than before!

    Also, dates of risk assessments are when mum was in hospital!

    Its a joke. I went through a lot of my concerns with the CH manager who admitted she wasnt actually there for the review! I suspect mums care plans aren't up to date and the review was done with a member of staff that maybe doesnt really know mum.

    Ive complained to the social worker, and back to the LHB that did the assessment. I filled out the Proforma that requests a CHC funding meeting so am now waiting for the nurse assessor to get back to us.

    I'm sure she'll fight her corner but I'll fight ours too. So many factual errors I told them I have no confidence in that review and we want another one done with us present. We shall see!
  7. sue38

    sue38 Registered User

    Mar 6, 2007
    Wigan, Lancs
    The CPN who did the initial checklist for my dad must have seen the wrong person as what he wrote bore no resemblance to my dad. Like you say, at the time it seemed like a bad joke.

    It took me a while to pick up the reins again, but when I did I found that correct procedures hadn't been followed. I appealed and we went straight to the DST at which point my dad was awarded CHC. So don't give up, even though you might feel that you're banging your head on a brick wall.

    You should have been informed of your right to have the decision reviewed and I would request this with your own completed version of the checklist and why you believe your mum's score would be different.
  8. Havemercy

    Havemercy Registered User

    Oct 8, 2012
    If your mum was sent back to her care home for end of life - ie palliative care (and it sounds like this was intended) then Fast Track CHC funding should have been applied for. What is required is that an appropriate medical person (could be a GP) is willing to testify on the form that she has "a rapidly deteriorating condition that is entering a terminal phase". I would post a link but I haven't got through hang of this on my new device yet - but there is plenty of links if you Google Continuing Health care Fast Track.

    The care home might know about it - or you could enquire from the district nurse who covers the cars home. Good luck.
  9. Timeout

    Timeout Registered User

    Feb 10, 2012
    Thanks. I have had the hospital discharge notes this morning that clearly read that she was discharged on end of life.

    Who do we approach about getting this? Go back to her GP?

    We did ask in the hospital at the time about CHC but the consultant said that the paperwork would delay her discharge so we should apply for it when we got back to the care home. This is now where we have hit a brick wall as the nursing assessment is nothing like how mum is.
  10. Havemercy

    Havemercy Registered User

    Oct 8, 2012
    Yes - that would be a good starting point but the district nurses might know as well. It will need to be a GP who writes the Prognostic tool which is the basis of the Fast Track Funding decision. Other than that you could try to contact the clinical commissioning group for your area - the business manager at mum's GP should know how to contact them. The good thing about Fast Track applications is that there is not all the domain stuff - it's merely based on Prognostic tool bit completed by medical person.
  11. Havemercy

    Havemercy Registered User

    Oct 8, 2012
    Actually thinking about it - probably best to contact her GP.
  12. Timeout

    Timeout Registered User

    Feb 10, 2012
    Thank you, I will contact her GP and see how we go from there.
  13. sue38

    sue38 Registered User

    Mar 6, 2007
    Wigan, Lancs
    I would approach the CHC department for your CCG direct. i found GP's quite uninformed about CHC, although I'm going back a few years now and things may have improved.
  14. Timeout

    Timeout Registered User

    Feb 10, 2012
    #14 Timeout, Feb 11, 2016
    Last edited: Feb 11, 2016
    I think I've emailed everyone!

    I contacted the social worker who has been very sympathetic and completely in agreement with me. She said her hands are tied as it is a health led matter so to contact the lead nurse assessor for CHC funding at the local health board and try mums GP.

    I sat down, went through the nursing assessment for each of the domains and wrote examples of why we felt the scores were incorrect in some areas. I also made a table where I compared the review done 4 months ago with the one done last week to show how mum has supposedly improved in some areas despite being end of life.

    The thing I have the biggest issue with is the fact that medication is listed despite mum no longer being on it and risk assessments at the home were dated when mum was in hospital! That should be enough to raise a few eyebrows at the LHB.

    Anyway, we've had the hospital discharge notes now and they clearly say mum was discharged on end of life so hopefully all of this can be avoided and we can go straight down the fast track route.

    Cheers all for your input x
  15. Timeout

    Timeout Registered User

    Feb 10, 2012
    I also did contact her GP who just called me back. The GP's themselves don't get involved in the CHC process but they can ask the district nurse to do it.

    So, they will ask the district nurse to go along and assess mum and hopefully sign the fast track form.

    I hope it's as easy as that!

    I'm now worried that by instigating the LHB to assess too that it will cause confusion. Oh well, the more people and departments that get involved then perhaps we have a greater chance of success.
  16. Crunchy

    Crunchy Registered User

    Feb 21, 2016
    I agree, the CHC is a joke, and bears no resemblance to the description given of it. I have a friend who is a consultant, and he says patients have to be virtually brain dead to qualify for it. It needs to be re-named as end of life funding or similar :(

    I asked for my father to be assessed for it almost a year ago.
    All the forms were incompletely done by the care home, and when he moved home they had to start again. The admin errors were ridiculous, and I was passed from pillar to post by social services, the NHS, and the Continuing Care team, none of whom claimed any responsibility, so frustrating.

    By the time the assessment was actually done, he was fast tracked, because he had deteriorated to such an extent that he was unconcious and clearly dying. The palliative care team were called during his assessment, which incidentally was done by a woman who literally glanced at my father and spent the rest of the time in an office with his notes, then spelled his and my name wrong repeatedly on her notes, I was very unimpressed.

    Sadly, he died the following night, so he basically will get two days free care, shocking.

    Even more shockingly, the Care Home still haven't received the paperwork for this, or his backdated Nursing Fee refund he's due, so as his executor I can't deal with his finances until this is sorted.

    You have my sympathies. I'm afraid this sorry saga has made me completely cynical about many aspects of this process!
  17. Timeout

    Timeout Registered User

    Feb 10, 2012
    Well this is all turning into something like a political hot potato!

    We had a meeting with the CH yesterday with the Social worker present. Now, bearing in mind mum hasn't been out of bed since Christmas day we arrived to find her up and dressed in the lounge and with the social worker. How convenient.

    We asked who was present from the CH with the nurse assessor when she carried out the checklist and they 'don't know - no one is putting their hand up at the moment' the manager said.

    The manager brought out the CH records with show totally different dates to the ones listed in the checklist notes and suggested that the nurse assessor had picked up someone else's file as her 'house was in order' and all the dates are correct.

    So one of them is lying!

    The staff nurse sitting in on the meeting says there is no chance that mum will get CHC fast tracked as that HAS to be done in hospital - I corrected her and quoted the line form the framework about entering a stage of terminal decline and she said mum was now stable and in fact they were getting the GP out to reinstate all her medication! WHY???? What is the point????

    We came away from the meeting so annoyed at how these places can just close ranks and protect one another. The social worker was sympathetic and will contact the LHB to request a DST is carried out as she feels that there are some triggers.

    I'm not hopeful that even if its repeated we will get it though. It appears you have to be only just breathing (with huge support though) to get it!
  18. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    North West
    I fully understand the frustration expressed in the two previous posts. Many other people have posted about similarly frustrating cases.

    However, there is also plenty of evidence on TP and elsewhere that the statements 'you have to be pretty much brain-dead to qualify for it' and 'you have to be only just breathing (with huge support though) to get it' are not correct. My wife has CHC funding. She isn't brain-dead. She breathes normally, without support. She is by no means unique in having CHC funding, a living brain and the ability to breathe.

    I repeat, I do understand the frustration but I would hate to see people who might qualify for CHC not even getting close to it because those responsible for their care haven't realised that they might qualify.

    I agree that the case against the way in which the CHC process is currently so often applied is very strong and needs to be highlighted accurately at every opportunity.
  19. jasmineflower

    jasmineflower Registered User

    Aug 27, 2012
    I agree with Stanleypj, my MIL qualified and she isn't brain dead but she did have needs that required specialist nursing care.

    You need to understand the correct procedure and appeal if this hasn't been followed.

    There are specialist solicitors who will help you work through the system. Some are linked to Age UK.

    It may well be worth looking for expert help if you can afford it.
  20. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    North West
    #20 stanleypj, Feb 23, 2016
    Last edited: Feb 23, 2016
    I think jasmineflower is right. You appear to have highlighted ways in which the procedures were faulty and should seriously consider appealing.

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