First topic message reminder :

Welcome to the new 'free nursing care' forum which replaces the old MSN message board and many thanks to Stephen Johnson who has set this up and also created the new www.continuingcarecampaign.info website. This is not yet complete as I still have to produce a new home page which will provide all the initial advice and information required to set NHS continuing care claimants on the right track! The objective of the campaign is simple: To compel the government to obey the law and provide NHS care 'free at the point of need' in accordance with the 1946 National Health Service Act. Now please use this forum to tell others of the 'endless deliberate delay, prevarication, procrastination and sheer bloody-minded intransigence' which you encounter when dealing with NHS and Social Services staff. Postings must of course be 'on topic', factual and must not enable particular individuals to be identified. Steve (Esquires)

Thanks for that.
My mother had a spell in a nursing home inbetween times which should have been charged as 'respite' whilst her leg was healing, but was turned into re-ablement, (free) when I protested. Unfortunately, this meant that the wrong body funded the care - Social Services rather than NHS. This also meant that she had not received any re-ablement, plus care in the nursing home was not what it should have been so I got her re-admitted to the sister hospital to the first one for re-ablement, but because of the nature of her condition, she would not comply - hence she can't walk or stand and they have now given up trying to get her to do so.
They have said that she is ready for discharge many times, but I am trying to stick up for what is right. Some are getting very 'shirty' with me, saying that I am putting her at risk of infection, etc., but there was plenty of that in the nursing home.
Apparently a decision has to be made by me when the panel has made its decision this week. She has to be moved somewhere now they say.
This is why I need to find out whether the NHS is still obliged to fund her care wherever she may be under the new rules which came out 1st October, whilst I appeal to the SHA, which is what it seems that I will have to do, as all parties insist that the panel will say 'no' to the funding.
They are minimising her problems on the DST, but maximising them with regard to a risk assessment for coming home, which is only on the condition that she will have to fund these hefty home-care costs. I have notified both sides of my thoughts on this.

Verygood - The " Risk of infection " comment made by them is moot because it is just as prevelant in the care home as it is on the hospital ward. My Mum is still testing for carrying the MRSA germ but is still allowed to mingle with other residents !!

They do minimise the condition on the DST's - it's just another way of conning people out of Full Funding. I'm hoping someone can advise you properly and specifically about the way they are bullying you to dishcharge her.

Many thanks for all the above help. NHS Continuing Healthcare funding has been granted for my mother for three months, until a review.

My wish is for her to come home, but they say that this is not possible. Apparently they have capped their funding and will not pay for carers at night at home. I said that I knew of someone who has 24 hour care in their own home - not in this PCT they replied.

I keep asking for their reasoning in writing, but this never comes.

They have asked the Social Worker to find her a placement in an EMI nursing home. Apparently, all the local ones are full or are not equiped to care for her. The only ones which will have her are miles and miles away. I think that the plan is to put her somewhere remote, charge 'top-up' fees, then withdraw the funding at the three month review, then means-test her. (Or am I being paranoid?)

I have asked for the Social Worker's care plan, but this has been refused.

My mother is currently 'bed-blocking' in hospital still.

I have just been telephoned by a sister on my mother's ward who wants to arrange a meeting between me, Ward Manager and Divisional Manager 'concerning my mother's future'.

When I mentioned to her about my continuing communications with the Continuing Care Office, she just said, "Things have gone further than that." She wasn't prepared to discuss anything over the telephone.

During my last 'difficult' conversation with the Social Worker, she said that I'd better get myself a lawyer. (Does anyone think that I need to yet?) She talked about them 'evicting' my mother from the hospital. I suppose this meeting has something to do with that. (I said that there was always a place for her at home). She was not happy when I said that I was not prepared to discuss my mother's finances with anyone.


I worry about attending the meeting on my own. Despite all my good intentions to 'keep strong', I invariably crumble, especially if there is someone from Social Services in the room. No one is ever on my side. I wish that I could get to speak with someone with a little common sense who would assure me that funding would not be withdrawn in the future, as my mother is not likely to improve, instead of insisting that everything hangs on her nutritional needs re: funding, rather than all her other problems.

Yours, sleeplessly.........

Hi Verygood, Its so sad to see the terrible stories we read here day in and day out. Ask the Social worker for the list she has of EMI homes and then call them yourself to see if the are all 'full' or ring one that is in your area to see if it has any vacancies, then let the SS know you have found one that is suitable. These people are being very heavy handed with you and bullying you. You are in a very strong position because your mother is still in hospital and 'bed blocking', so they will have to back down as they will want their 'bed back'. Can't you find anyone to go along with you, even if they don't say anything it will be so much more supportive for you. I feel very angry that these people have bullied you and how dare this nasty piece of work Social worker say to you that you had better get a lawyer, who the hell do these people think they are. Tell them that you will not have your mother placed in a home that is not acceptable to you and you will not let them move her from hospital until a 'vacancy' in an EMI home in your area becomes available. Let them know you mean it and I can assure you they will find her a placement of your choice to move her out of hospital. Always keep this in the back of your mind when dealing with these people that it is the well being of your mother that is of utmost importance, she is a human being who you love and who means nothing to them. Please try to be strong and remember these people are no better than us at all, they breathe the same air we breathe its just we have morals and they don't.

Thank you Pussycat. It is good to know that someone cares.
They firstly telephoned last night, wanting me to go to a meeting this morning, but I have a prior engagement. They are supposed to ring back this morning to re-arrange.
They may offer a 'temporary' placement in a nursing home not of my choosing until a more suitable placement is found - then think that they have dealt with it and she is stuck there! (Paranoia rearing its ugly head again.)
I keep writing to the Continuing Care office to get a written response about why it has to be an EMI home rather than her own home, but they won't put this in writing.
Re: evicting her from the hospital - both SS and CC have told me that this has happened to people and how nasty its gets.
You are all welcome to visit us both 'behind bars'!

Verygood I am sorry and disgusted in equal measures to read about the bullying you are suffering. This is cold comfort I know but the same practices are going on here as I have heard of a couple of stories similar to yours.It seems this heavy handedness and greed is like a nasty virus and is spreading right across the country.


regards Dee

It seems to be a pre requisite for anyone wanting to work for social services or the NHS and be involved in the care of the elderly, sadly. They still try to bully and harass and give out misinformation, even though more people are now aware of their deceit.

Yes Bob S - what a sad world this is!

Verygood, Please do not agree for them to place your mother in a 'Temporary placement' nursing home unless it is one that you feel is acceptable and within the area you can visit her. All they want is your mother out of the hospital bed and once she has been 'outed' you will have an even bigger battle getting her moved to one of your choice. Stick with it and tell them you will not agree to them moving your mother unless it is to a suitable home in the area you can easily visit her. They won't like it but as they really want her out of hospital you are holding the ace card. Also if and when a suitable home is found do not under any circumstances sign anything regarding the home. Make sure the contract is between the PCT/NHS and the home and do not divulge any of your mothers finances to anyone as it is no business of theirs. I know it is hard when dealing with the guilt of having your mother in a home we have all had these guilt feelings but as this may be the only practical outcome make sure it is one that you are happy for her to be in. Best regards

verygood - they have lied to you - yet again " NHS Continuing Healthcare funding has been granted for my mother for three months, until a review "

In that case then the NHS CAN and DO fully fund a person - even in their OWN HOME. If they are saying that they won't provide care at night it sounds like the social services " means testing " route and NOT NHS Full Funding.

Barbara Pointon managed to get this for her husband suffering with dementia and recenly ON THIS FORUM Lyn has also got NHS Full Funding for her husband whom she care for in her own home. I'll try and find her link and hope that she sees your post.

verygood - here id the link from Lyn :-

http://freenursingcare.findtalk.biz/general-chat-f1/we-won-t392.htm

Thank you bodecia2007. I have seen this and as I commented before, Lyn states that she had a helpful Social Worker. It is NHS Continuing Healthcare funding that has been granted for three months, but this PCT keeps insisting that they don't pay for care at night in a person's own home and that their rates are 'capped' as I've read on other people's postings elsewhere on this site. However, they are reluctant to put this in writing, so I think that I must keep insisting that they send a 'proper' letter stating why they won't fund care in my mother's own home. And Pussycat - I do agree with you about the temporary placement - once there I'd probably never be able to get my mother out again - either home or to a more suitable nursing home!

Yes verygood - what they are saying cannot be backed up in writing so I'm thinking they are just fobbing it off. ie They say it does not exist therefore it dosn't ??

I would ask them then how come Barbara Pointon and Lyn got full funding in their own home yet they will not even entertain your claim for it ?

And when we even hinted we would be taking Mum back home [ when we ran out of money and the LA refused us a deferred payment scheme ] the care home were straight onto the Social Services - unbeknown to us ofcourse. We only found this out when we got copies of care records from the LA!!

Just a thought - have you heard of Direct Payments at all ?

Yes, bodecia2007, I keep mentioning Barbara Pointon and others cases, etc. I have also told SS and CC that if the money stops after three months and that mum has been placed in a home, that means-testing isn't an option. I also intend to tell any nursing home manager that they will just be dealing with CC and not with my mother and I for future funding should it be withdrawn after 3 months. I will still be willing to take my mother home in three months also, should funding cease - as I keep telling them all, she can come home now, could have returned home in the past and may return home in the future as far as I am concerned.
I have heard of Direct Payments, but they can be means-tested too in a way and why should I go down that route when CC has benn granted?

Direct Payments [ from what I understand ] is that the Local Authority pays the person x amount per week for them to " employ " carers to care for them in their own home. This was a gvmt backed idea for people to be able to stay in their own home and still receive their care there. HOWEVER in "reality" no one seems to know about it. The social worker SHOULD advise the person of this option but they very very rarely do. They would rather the person sell their home to go into a care home than have their local authority pay for the persons care !! We had a financial advisor state to us that Direct Payments are the governments " best kept secret "[ or should I say ONE of them !! ].

And yes CC is the best option every time . I'm sorry but I didn't realise that you had already got this. Well done !!

I just try to plug the Direct Payments thing because this would have been ideal for us when Mum was just staring with the dementia. And anyone else in this position have never heard or been advised of it, as another option for long term care.

Did you know that there are also Direct Payments for Carer's - not means-tested and designed to pay for a 'break' or 'treat' for carers, (not the cared-for). It was £200 per year, but you couldn't spend it on just what you wanted, e.g groceries or petrol - it had to be on a short break or similar, what the money was spent on had to be agreed by Social Services and you had to provide a receipt. I don't know whether it's country-wide though.

No I didn't know that. The only thing we were ever told of was respite care . However there is only 1 council ran home in our city and they wouldn't take Mum back after the one and only respite period she had - due to her challenging behaviour. The social services were abso;utely of no help to us when we were telling them about the impact the caring for Mum was having on us. They just ignored our pleas.

Respite care here costs £150 per week and you are entitled to 6 weeks each year. My mother was expected to pay this whilst she was being hoisted after breaking her leg, after initially being discharged from hospital and before she could receive re-ablement. As it has happened, she has never walked since. My doctor said that she should not have been paying respite charges as the hoisting at that time was 'medical', not 'social' as the SW was insisting. Same old story as CC!

My Mum broke her hip twice while in her previous care home and they just put her to bed in that state not seeking medical help until lunch time the next day. She can't speak so it must have been hell for her. We paid £450.00 per week for that priviledge.