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CHC Refused and Other Questions.

Discussion in 'I care for a person with dementia' started by Trem, Apr 16, 2015.

  1. Trem

    Trem Registered User

    Apr 16, 2015
    Hi all, new member here and like many others I guess I just need some advice and others to talk to in a similar situation.

    I quit my job last year to care for my mum who has FTD, 6 weeks ago she had a fall and broke her shoulder (I'm doing this the short story way to get to the point) and ended up in hospital. She has now been moved to a specialist dementia ward within the NHS and it has been decided (by me as well) that she needs 24 hour care, somethiing that I cannot do (young family etc). She has today been refused CHC which I knew would happen, she isn't aggressive but will score high on the other things so I am going to ask for the results and check for myself but it isn't a surprise. She has been awarded FNC which I assumed would help towards the care home bills, it does not, that just gets swallowed up and makes no difference at all to finances, not even the top-up fee negotiations. I am fairly sure the care home will not use this extra money to give any extra care!

    I have a choice of 4 homes to look at (those with EMI beds available) and I have looked at 3 and hated them all.

    Mum has her own house which we are going to rent and use the deferred payment option to at least get some money towards the fees and of course if you sell the house it puts you over the capital limit and you then have to pay the upper care home fee amount.

    My questions are this -

    1. How long do I have to find mum a care home, can they kick mum out of where she is or can I sort of drag my feet because she is settled there and I know she is getting cared for properly, can the NHS put a time limit on how long mum can stay there?

    2. The social worker is coming tomorrow and the CHC will be discussed and I already know they haven't got any of mums previous medical records for the assessment, shouldn't that of been done?

    3. I am now on my **** so to speak, apart from signing on is there any other help offered for carers who find themself in this situation through no fault of their own? I honestly feel like the pressure outside of my head is going to crush it.

    4. Top-up fee's, we are expected to pay this (it gets a bit complicated because of the deferred payment etc), my wife works 2 jobs (to allow me to quit and care for mum) and I have no income now, how the hell can they expect us to pay £50 a week which is basically to subsidise the shortfall of the council fee's?

    I have other questions and they will arrive in my brain throughout my stay here. Yes I do have LPOA for both health and finances for mum.

    Any help appreciated, and hi!

  2. jasmineflower

    jasmineflower Registered User

    Aug 27, 2012
    Couldn't read this and run without leaving a reply even if it might not be very useful.

    It's so confusing all this, isn't it.

    I personally would drag your feet until you find the right place - in our experience SS don't rush to act quickly so guess you can follow their example

    Top up's: I'm no expert but there are many posts on here saying that you cannot be forced to pay top-up's so definitely investigate further.

    With regard to CHC, do you know how your mum scored? How many "severe's" etc. try to get the full results of the assessment so you can judge whether it is worth going to appeal. We used the services of a company called Beacon who are private but linked in some way to Age UK. They gave us good advice in a paid 30 min phone consultation.

    It might also be a good idea to contact your local Alz Soc support worker, Age UK or Citizens Advice to make sure you have the best independent advice re: funding your mother.

    This is a complete minefield to the uninitiated so good luck finding your way through.

    Wish you well
  3. Pickles53

    Pickles53 Registered User

    Feb 25, 2014
    Radcliffe on Trent
    No expert either, but I have read numerous posts on TP saying that it is not legally permissible to pay top-ups when a person has CHC funding unless for services which are clearly designated as 'extras' eg a larger room, a sea view or something else not forming part of the assessed needs for which CHC funding was awarded.

    If the home with higher fees is the only one suitable to meet all a person's needs, including the opportunity to benefit from family life by regular visits, then the CCG should pay full amount.
  4. daisydi

    daisydi Registered User

    Feb 25, 2015
    I have to pay top up for my mum and she is sharing a room at the moment. The reason I was given is that the LA pay up to a certain amount and then I have to pay the rest. Maybe its because it is not one of the LA care homes but a private home ...
  5. betsie

    betsie Registered User

    Jun 11, 2012
    I didn't think a relative could be forced to pay top up fees. If they are in the only home available/suitable in your area then you can not be made to pay top up fees. I thought it was only if you wanted them to stay somewhere when the council had a cheaper one available which was still suitable.
  6. Trem

    Trem Registered User

    Apr 16, 2015
    Hi all and thanks for your replies.

    Because the payment has been deferred then the top-up payment can be paid out of my mums pocket (I think, after reading the new care act) so to speak but she is already going to be waaaaaay into the negative with everything else, the rent we will get for her house may pay half towards her care home fee's (it will be part self funded and part council) so add to that another £200 a month on top then it becomes scary and it is something I am digging my heels in over, they won't use the extra money for anything extra for my mum, we all know that, same with the EMI/FNC money they will get, it will just be used to buy another Mercedes, we know this.

    Mum has no savings just her house which still has a small mortgage on it.

    I want my mum in the best place on one hand but I don't want to kill myself over raised blood pressure everytime I visit her if I think she/me have been ripped off, if that makes sense?

    I have nothing from the CHC assessment yet, the social worker is coming in the morning and this will be the discussion but I knew it would be refused so I wasn't shocked or upset, it is early days yet though, I don't give up easy.
  7. Emily M

    Emily M Registered User

    Jan 20, 2015
    Care Home Worries

    Hello Trem

    I noticed your post just as I posted one myself this morning concerning fees. I am glad that your problem seems to have been resolved.

    My mother is to go into full time care. This was a relief as my step father could no longer cope, but now potentially there are new problems. They don’t own their house so deferred payment is not an option and her and her husband’s savings are small. You would think that her care would be provided by the local authority – yes it will, but only to a certain amount. There are homes that will take her for this, but to have more choice top up fees are required. “Is the family willing to pay this?” was the question. As an only child that family is me!

    My husband and I decided a while ago to give up our full time jobs to have more free time so our income is not great. Savings are mostly tied up and anyway these were meant to provide for us when we retire. The social worker did not put any pressure on me when I said that top up is not an option, but why does it make one feel so guilty. It is emotional blackmail. It is not as if it is a small amount or a one off payment as it would be likely to be hundreds of pounds a month. Now I am worrying that my mum and step father will be waiting a while for something to be found and there will be very limited choice. If it wasn’t upsetting enough when someone goes into care without these added concerns.
  8. Trem

    Trem Registered User

    Apr 16, 2015
    Hi Emily, nothing has been resolved for me or mum yet, this is just the beginning of it all.

    Like you said it feels like you are being black mailed and if you refuse to pay the top up you get made to feel like you don't care.
  9. marts1711

    marts1711 Registered User

    Oct 25, 2014
    Hi Trem
    Your post has really struck a cord with me.You have written exactly what I am feeling and we are in exactly the same situation as you.
    Dad is in an EMI nursing home, has vascular dementia and numerous other health problems but CHC was refused in February. He is getting FNC but as you say we never see it and it isn't taken off the fees which I find incredible!!!
    We are in a deferred payment situation too as he is self funding and has to pay around £500 a week from his pension and AA. He has a house that we have decided to rent out but it needs a full refurbishment, that I am going to have to fund myself, before anyone would consider renting it. Luckily no 'top-up' fees have been mentioned by the home and I would refuse point blank to pay any if I were you. I am trying everyday to juggle all this in my head. What if his pension and any rent we get take him over the LA reduced placement cost? What happens then? What about tax implications?
    God this is a bloody mind field.
    I really want to appeal the CHC decision and others on here have given the names of a few solicitors but again it's the money implications and I will have to make a decision soon. Half of me says 'I can't do the fight' but the other half says 'I won't let the b******* win and take everything from my dad who brought myself and my sister up along as mum died when we were very young.
    And yes my head also feels like there is a clamp around it, and I have been suffering awful tension type headaches for two weeks. This is not right is it, to put families through this situation when we are so upset about our loved ones as it is.

    Rant over.:)

  10. Emily M

    Emily M Registered User

    Jan 20, 2015

    Sorry Trem. I assumed that it had been resolved because you said the payment had been deferred and the top up fees could be paid out of your mum's pocket. I can see there is still a lot more to sort out. I agree with marts - don't pay any top up fees yourself. Why should you? Make them wait for their Mercedes!

    It appears to me in this situation it is either better that the person is extremely rich or has nothing at all. If they have nothing at all then it seems that the LA does their utmost to try to get the money from any relative who is able and willing to cough up.

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