1. ellie 123

    ellie 123 Registered User

    May 25, 2006
    91
    Please, please, please - does anyone have any experience that may help me in my present predicament.

    Having just got my head around having to put mum into a temporary home due to my own health failings - I have just received a call from mum's SW to inform me mum has had a fall this morning and 'obviously they will keep a better eye on her now this has happened'. Doh - why isn't this par for the course. Then she followed it up with of course, we know she's going to have falls, as she was having them in hospital. Contradiction or what. If they know that why are they only reacting?

    Then I was informed I had to "negotiate" with the home over mum's fees. Excuse me but does anyone know what this means. Either there's a price or there isn't. Does this mean depending on how good our haggling skills are as to how good a deal we get?

    Finally I was informed that the care package arranged for mum will go this Friday and then I will have to start again and wait until something else becomes available. I've tried getting in the car to drive, but with my back at the moment, I can't even make it to the end of the street before I'm in acute pain - but if it kills me and if SW can hold package until Monday, this weekend I will be driving the 300 miles to mum. AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAGH. Sorry but I am v. angry. It seems at every turn, the system does it's best to make things impossible.

    Oh and here's something that will probably make you all laugh - I've just called the helpline to ask if I can get hold of anything which will inform me of either my mum's or my own rights so I know what I can fight and what I cannot. We don't have any rights. Yep I know, how naive am I - thinking that any of us or our loved ones would have right on their side.

    Am just about to stick my head outside the window and SCREAMMMMMMMMMMMMM!
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,591
    Kent
    I wish I could help you Ellie, but it`s way out of my experience.

    Which Helpline did you call? Was it the AS Helpline? If not, perhaps you can see if they can be of more help.

    AS National Helpline 0845 300 0336 8 30 a.m. -7 pm
     
  3. ellie 123

    ellie 123 Registered User

    May 25, 2006
    91
    Hi Sylvia

    Yes it was Alzheimer's helpline.

    Thanks for the thought - I know you'd offer help if you could.

    Just throwing a net out really to see if anyone does come up with something that I can use.

    Lots of love ellie
     
  4. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Ellie,

    I'm not surprised you'e at screaming pitch. It's a case of 'anything that can go wrong, will go wrong'. I'm sorry your mum has had a fall, and agree that if they knew she was liable to fall, there should have been more safeguards.

    As for negotiating the fees, I'm afraid this does happen, where people are self-funding. The published fee is usually considerably higher than the LA maximum, and it's this difference that's negotiable.

    I presume this is the package you've set up at your home? Are you planning to bring your mum home this weekend? Are you sure you'll be able to manage? Don't put your own health at risk. That drive alone with a slipped disc could be dangerous, and them you'd have to be able to lift and manoeuvre your mum. Please think about it carefully.

    Scream away. It's a great way to relieve tension!

    Love,
     
  5. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,439
    Ellie

    Are you going to be responsible for paying these fees? Or is it social services funded respite? Or what? Because actually no, care home fees are a bit like buying a car. There's the sticker price and then you may be able to get a discount. LAs regularly pay less for the same placement. When my mother was in a nursing home we paid £600 while the LA paid £450 for exactly the same thing. The stated rationale for that is that LAs are "bulk buyers" and therefore get a discount. Bah humbug is my view on that but it is what it is. It never occurred to me, personally, that I might be in a position to negotiate, and in all fairness I knew that my mother had sufficient assets that she could afford to pay the sticker price for the forseeable future and on that basis, I think it would have seemed a bit tacky to be nickle and dimeing over this issue. Mind you, I didn't know that I could, so this is hindsight.

    Falls I'm afraid to say are an integral part of life with a dementia sufferer. Even if you know they're going to happen it can be almost impossible to stop them. When my mother was walking I couldn't stop them, and she would also fall out of bed. Only at the end when she became bed-ridden and unable to climb over the safety rails did they stop completely. Barring tieing them to cahir of a bed or adminstering a "chemical cosh" there is really no way to avoid this completely - I have seen my mother fall over when I have been no more than 3 feet away (actually she has fallen when I've been holding on to her - I suppose I could say I broke her fall).
     
  6. christine_batch

    christine_batch Registered User

    Jul 31, 2007
    3,388
    Buckinghamshire
    Hi Sylvia,
    What a rotten day you are having. Can you try the S.W. and really stress that you are unwell ? As for the finances, try having a word with the Care Home. Some are very compassionate they may be able to give you time until you are well enough to deal with things. I am disabled and my husband is in a E.M.I. at a Care Home and although Peter was placed there, my contribution was high. I wrote to the Council and as I still have a mortgage could not meet the bill as well. They did half the contribution. According to our Manager at the Care Home, as the Council have block bookings it is cheaper. Apart from ringing A.S. at this present time I cannot think of anything helpful to advice you on other than don't drive with a bad back and open the windows and scream as loud as you can. You should heard me moan and scream and I am alone in my home but the Powers that be do that to me. Get better soon and I wish you all the best and hope that your Mother does not have any more falls. Christine
     
  7. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,591
    Kent
    Dear Ellie.

    If you are in such an unacceptable position as this, I can only suggest you write to your MP.

    I imagine half of them haven`t a clue what we have to suffer on behalf of relatives who need care, and as there is a consultation now ongoing about care for the elderly, perhaps this is the moment you can make yourself heard.

    I suggest you also write to Ivan Lewis, who is the Minister in charge of the consultation.
     
  8. 117katie

    117katie Guest

    Hi there, and my heartfelt sympathies and SCREAMs on your behalf. I've spent a similar week SCREAMING.

    May I offer just one thought, just one suggestion: if you are being treated for your own medical condition, your own back-pain by your GP or a Consultant, then could you make an emergency call to that GP or that Consultant and ask that they contact your SW IMMEDIATELY and explain that it would not be in the best interests of your relative, nor in your own best medical interests to have to do that drive to collect your mum.

    And I would suggest to the SW that you will hold her personally responsible for making a decision which is not in THE BEST INTERESTS of your relative.

    Only a thought, but might be worth a try.

    All my best wishes
    Katie
    PS. I WILL SCREAM FOR YOU, so please take it gently at your end!
     
  9. ellie 123

    ellie 123 Registered User

    May 25, 2006
    91
    Hi everyone

    Thank you for all your heartfelt responses.

    Have any of you read the interview with Ivan Lewis in the latest Saga mag? I don't know whether is sounds hopeful for us or not. Mum is self funding but it doesn't stop me looking at and checking each and everything she is asked to pay for because sometimes I feel self funders are taken advantage of - no offence to those who aren't self funding (after all, mum will be there one day as her money wont last for ever).

    Katie - as to your suggestion, I have yet to find a professional sympathetic to my situ. What I mean is, everyone, EVERYONE wants and expects me to put mum in a home. I can't understand why and can only think that it maybe makes their lives simpler, for example, if she's in a home I'm not on the phone to SS all the time, requesting home help, respite etc.

    As to negotiating care fees - shall I just ask for a discount or is there an acceptable percentage they expect us to go for?

    Hazel - yes, this is a care package for home and no, I'm not due to bring her home yet, as nothing has been, re: care, organised my end. But if I miss this window, then either I bring mum home and manage with no help or she stays put until another care package becomes available. And of course, Christmas is slowly creeping nearer and I really want to have her settled before then and possibly even do some Xmas stuff for my family.

    Sorry I have to get these things off my chest, it does amazing things and keeps me going if I can have a good old rant on TP. But apologies to all of you that have to read my rants.

    Love to all ellie
     
  10. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Ellie, no apologies needed, rant all you like.

    We all learn by reading other people's experiences, and all we can do is give the benefit of our own in return

    That, and lots of sympathy and hugs.

    Love,
     
  11. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london


    I Can't understand what the reason be-hide it, that they are giving you a time limit on care package for your mother

    your self funned your be paying for it all so what they issue I would be asking , also wanting to talk to someone from head of social services to tell me why they are holding back services you can't understand it as they not working towards your mother best interest , telling them that its detrimental to your mother mental heath that she could be at home with you , lay it on to them .

    don't go on about care home tell them your main concern now is getting your mother home with you now and you want to see how you cope when she living with you, with care package [ Lie if you have to ] cry on the phone if you have to and if that don't work we know how really heartless SS our
     
  12. elaineo2

    elaineo2 Registered User

    Jul 6, 2007
    945
    leigh lancashire
    Dear Ellie,what a situation!my advice would be to sit down,calm down and take a total restock of the situation.Make your voice heard and don't take "no" for an answer.Be as calm as you can be given the situation and insist you get what you want.if the S/W doesn't accept your concerns and needs.please let me know.I have a few more tricks up my sleever i am willing to pass on!love and good luck elainex;)
     
  13. Petrus

    Petrus Registered User

    Aug 7, 2007
    61
    Northumberland
    Self-Funding vs. Private

    Ellie,
    I met with the head of benefits payments of our local SS yesterday at the request/suggestion of my wife's (J.) care manager. We were discussing the right approach to take re. direct payments for both home support and respite care.

    She (head of benefits payments) drew a clear distinction between self-funding and private payments.

    Self-funding means that the patient enters the home on the social services contract but the sufferer pays the full means-tested direct payment fee. The council pays the bill and charges the patient the means tested fee or the cost of the home, whichever is the lower. In the event that the bill is above the direct payment fee, SS pays the difference. (In case you are worried, SS does not decide to which home you need to go. Provided the home is on their list, you have a free choice. In my case the home that I and our son had put top of our list of 5 that we found acceptable both for respite and, eventually, permanent was on their list; indeed it was when I gave the name of the home that the head of benefits payments entered into this discussion with me saying, "That home is on our contracted list - a very nice one too - that makes direct payments and self-funding the right way to go".

    Private means there is no Social Services involvement so that the home is free to charge whatever it wishes to - and so you can negotiate on that price.

    Clearly it is in the patient's interest to go self-funding with the direct payment system - unless you think you can negotiate a price lower than Social Services - unlikely.

    There is further paperwork to be done before all is signed, sealed and delivered. This should happen in the next few days (J. is scheduled to enter Nov. 7). I will advise you if the story changes meaningfully.
     
  14. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,439
    I wonder how common that system is Petrus. You mention direct payment so I suppose you are referring primarily to respite care - we never got into that. I wonder if your local authority offers the same sort of option for permanent placement. I have heard of situations where you can get the LA to sign the contract, thereby getting the lower LA rate, and then you pay the LA that rate (this now seems to be what you have to do in Scotland). I'm also not sure whether Ellie's predicament comes under the category of respite, or simply temporary placement, which is handled rather differently according to CRAG.
     
  15. Petrus

    Petrus Registered User

    Aug 7, 2007
    61
    Northumberland
    Ah!! The Complexities

    Jennifer,
    Your note and mine (Posts #13,14) illustrate the complexity of the whole system. No wonder people who have to ask for or have to deliver services suffer. The whole COMPLEX MESS makes it impossible for them to do their work. I am no expert in this area, but from my long experience of creating and managing international organisations (in private business) it is crystal clear to me that there exists, within the government bureaucracy, a huge conflict between:
    1. The need to give (understandable) guidance to those who have work to do
    2. The need for legally sound documentation for when the government is challenged in the courts (as, inevitably, it will be).

    A good care manager who can help the carer through the complexities is essential. I am concious that there are very significant differences between authorities (and, even, within authorities) - not surprising given the complexities and the rules of thumb that people must develop in order to be able to function within the (unintelligible) complexity of the various guidance documents.

    On the specific points:
    1. I assume the CRAG to which you refer is Charging for Residential Care Guide http://www.dh.gov.uk/en/Publication...ions/PublicationsPolicyAndGuidance/DH_4107292 (not Clinical Resource and Audit Group which applies only to Scotland)

    2. I believe that "respite care" is part of "temporary care". CRAG states (3.001), "The definition of temporary resident allows the LA to regard a person's stay as temporary if it is likely to last for any period not exceeding 52 weeks, or, in exceptional circumstances, is unlikely to substantially exceed 52 weeks." Further, http://www.direct.gov.uk/en/HealthAndWellBeing/HealthServices/CareHomes/DG_10031524 in discussing temporary care states, "A temporary stay in a care home can be a welcome break for you and for your carer, if you have one - this is sometimes called respite care. A temporary stay can provide:
    • care while you recover after an illness or a stay in hospital
    • support if you are newly disabled
    • a break (respite care) for you and/or your carer
    • a break if you live alone to allow you to continue to live independently
    • an opportunity to get to know a particular care home that suits your needs if you are thinking about permanent care"
    3. Further down the same HealthAndWellBeing web page there is a section on "Funding temporary stays". This includes the following, "If you can pay the complete cost of your temporary care, you can make your own arrangements. ...
    You can ask your local council to assess you for respite care services. If they assess you as needing care they may be able to help pay for it.". I suspect this is the basis of the distinction between private paying and self-funding.

    4. You are right that direct payments only apply to temporary (including respite) stays in a home. This is made explicitly clear in a useful booklet on direct payments
    http://www.dh.gov.uk/prod_consum_dh...@dh/@en/documents/digitalasset/dh_4097399.pdf (There is a simplified vesion of this booklet on http://www.dh.gov.uk/prod_consum_dh...@dh/@en/documents/digitalasset/dh_4097399.pdf )

    5.From my discussion, I understand that I can go self-funding through the LA rather than private for full-time care. However, I am not yet in the situation of testing this aspect in practice.

    Sorry about the references and quotes, but they may of use to specific individuals. Since they only touch the very tips of the icebergs they illustrate the complexities!! This is where we need the Society and other organisations to put their campaigning effort to get government to deal with the conflict at the heart of the complexity - modern, international businesses have learned over the last 40 years how to do this.
     
  16. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,439
    Yes, I was talking about Charging for Residential Accomodation Guide. The Scotland reference was thrown in there to confuse everyone :D - not really: see this post http://www.alzheimers.org.uk/TalkingPoint/discuss/showthread.php?t=8362

    The problem is, of course, is that every LA has a different way of implementing CRAG. I know of at least one who refuse point blank to conduct a financial assessment until the resident has been in care for 8 weeks, no matter whether it is intended as a temporary or permanent placement and thus charge "the amount it appears reasonable to the LA for the resident to pay". I personally feel this is skirting the spirirt of the regulations, but there seems to be fair amount of that around.
     
  17. Nebiroth

    Nebiroth Registered User

    Aug 20, 2006
    3,518
    I firmly believe that the Local Authority get discounts for a number of reasons:

    1) They are a large organisation and therefore carry more "weight" than a private individual. This often happens. Got a dispute with a store? Take the complaint to the credit card you paid with and let THEM sort it out. The store will happily ignore you, an individual, but not a credit card company.

    2) They "supply" in bulk. That sounds awful but that's ultimately how care home regard residents.

    3) They are very unlikely to default financially

    4) They are very unlikely to remove the resident to somewhere else

    5) They offer the incentive of being able to offer care homes more business in the future
     
  18. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    that so true also take away the financial responsibility

    for them to fund a care home in our LA area, that why they close down so many LA care home
     
  19. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    3,725
    North Derbyshire
    Petrus, I didn't understand what you said. Mum is self-funding. No other body is involved, the contract is between us and the care Home, the local authority is not at all involved. I don't understand your reference to direct payments, cos if she is self-funding there are no payments other than ours. We pay £460 a week, while I know the home is on the "list" and funded patients are only charged £375 a week, it just doesn't apply to us. We have already negotiated a reduction - the room was initially quoted at £494 cos it is potentially a double room, the other two we were shown were very pokey and dark, I just didn't want mum to have one of those. So we negotiated down to £460. But nobody else is involved, the Social Worker only gave outline advice, and we have been left to our own devices.

    Regards

    Margaret
     
  20. Petrus

    Petrus Registered User

    Aug 7, 2007
    61
    Northumberland
    Clarification

    Margaret W.
    I am not surprised you (and I when I had my conversation with the head of benefits) did not understand.

    It looks as though there is a difference between the normal understanding of the term "self-funding" and the technical meaning of that term. (Not an unusual situation in any organisation that organisational jargon distorts ordinary meaning - it is just that governments are particularly prone to doing it).

    In normal language, self-funding and private funding would mean the same thing. In technical language they mean something different. Private means you are entirely on your own in agreeing a fee with, and paying it directly to, the home. Self-funding means the social services agree the fee and collect the appropriate amount of money from you and pay it to the home. In the case of a direct payment being involved, social services collect that payment from you and use to it off-set their costs.

    Hope that helps.

    I expect to know whether or not all this is correct in practice (I know I understood what the head of benefit said because I worked it through with her very pedantically) within the next working day or two since the home wants a booking from social services or payment of the private fee from me in order to reserve the room.
     

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