Well let the battle begin ! NHS say Nursing Home, Social Services say NHS continuing care. He was turned down by 6 nursing homes in December and now the one he was in cant handle him. Social Services say his needs are too complex and they now think the assessment in December was done wrong and not taking into account rapid deterioration . It was recorded in his notes when he was in hospital.Bed blocking has also been said. What a nightmare. Its like its our problem that there is no where for him to go. If its bad now what will it be like in the future for suffers and their families?
continuing care or nursing home
- Thread starter chip
- Start date
Oh chip, the NHSvSS battle seems to go on all the time.
I had a similar problem -- not continuing care, we never got that, but NHS wanting to discharge John to a respite bed, SS saying he wasn't fit for respite.
Our SW was brilliant. I'd suggest that you stay out of it and let them sort it out between themselves. SS won't take over unless a suitable placement can be found.
I had a similar problem -- not continuing care, we never got that, but NHS wanting to discharge John to a respite bed, SS saying he wasn't fit for respite.
Our SW was brilliant. I'd suggest that you stay out of it and let them sort it out between themselves. SS won't take over unless a suitable placement can be found.
Hi Chip
Does your husband meet the criteria for NHS continuing care?
I suspect he does. I don't think it matters what age he is, although I could be wrong, as I understand it, if someone is assessed as needing NHS continuing care, then NHS have to provide it.
I know you have always had to fight for any help with your husband, this I think is awful, but I suppose that there are fewer facilities for younger suffers, than older.
The powers that be should be addressing this issue, but I don't suppose that would get them many more votes
I know this doesn't help you in any way, but surely there has to be some NHS facility that could meet his needs
Take care
Alfjess
Does your husband meet the criteria for NHS continuing care?
I suspect he does. I don't think it matters what age he is, although I could be wrong, as I understand it, if someone is assessed as needing NHS continuing care, then NHS have to provide it.
I know you have always had to fight for any help with your husband, this I think is awful, but I suppose that there are fewer facilities for younger suffers, than older.
The powers that be should be addressing this issue, but I don't suppose that would get them many more votes
I know this doesn't help you in any way, but surely there has to be some NHS facility that could meet his needs
Take care
Alfjess
Group 3 dementia
Continuing health care will be provided by the relivant trusts and health providers for people wth Dementia when:-
Ongoing and regular specialist clinical supervision on account of the complexity nature or intensity of health need i.e medical nursing or other clinical needs taken together is required.e.g patients with dementia who wander and have severe parkinsons.
Frequent not easily predictable clinical intervention is required, eg patients with dementia who wander and have epilepsy.
The use of specilist health care equipment or treatment which require the supervision of specialist NHS staff is routinely necessary
There is a rapid deteriorating condition and the patient is terminally ill and requires specialist pallative care.
Constant availability of or frquent monitering supervison, treatment and care by medical and nursing staff is required because people have symptoms such as :- severe communication problems, severe agitation or restlessness which causes significant disturbances to other people and / or which leads to falls or wandering, constant verbal or physical aggression, stealing or interference with other people.
Here is his condition
seizures
very weak
swallowing problems
rapid not easily detectable decline
already had asperation pneumonia
rapid weight loss
high falls risk
cant walk but will try and get out of a chair if left
been on pallitive care since Feb
infections are one after another
assessed as needing one to one care
turned down by nursing homes
All this has happened in 15weeks he looks about 80/90 now yet he is 54
Continuing health care will be provided by the relivant trusts and health providers for people wth Dementia when:-
Ongoing and regular specialist clinical supervision on account of the complexity nature or intensity of health need i.e medical nursing or other clinical needs taken together is required.e.g patients with dementia who wander and have severe parkinsons.
Frequent not easily predictable clinical intervention is required, eg patients with dementia who wander and have epilepsy.
The use of specilist health care equipment or treatment which require the supervision of specialist NHS staff is routinely necessary
There is a rapid deteriorating condition and the patient is terminally ill and requires specialist pallative care.
Constant availability of or frquent monitering supervison, treatment and care by medical and nursing staff is required because people have symptoms such as :- severe communication problems, severe agitation or restlessness which causes significant disturbances to other people and / or which leads to falls or wandering, constant verbal or physical aggression, stealing or interference with other people.
Here is his condition
seizures
very weak
swallowing problems
rapid not easily detectable decline
already had asperation pneumonia
rapid weight loss
high falls risk
cant walk but will try and get out of a chair if left
been on pallitive care since Feb
infections are one after another
assessed as needing one to one care
turned down by nursing homes
All this has happened in 15weeks he looks about 80/90 now yet he is 54
Dear Chip,
My heart goes out to you. You are in a terrible situation. Have you asked for an ugent review with your husband's consultant? With such severe problems it is up to the consultant to take over your struggle and get the best care for your husband, no matter what age he is.
xxTinaT
My heart goes out to you. You are in a terrible situation. Have you asked for an ugent review with your husband's consultant? With such severe problems it is up to the consultant to take over your struggle and get the best care for your husband, no matter what age he is.
xxTinaT
Dear Chip ,
I do hope that you get the care that you need for hubby at this moment, and i ditto the above.
Sending you [[hugs]].
I do hope that you get the care that you need for hubby at this moment, and i ditto the above.
Sending you [[hugs]].
Social Services have pulled out. Saying its a NHS problem now. They are only keeping his file open incase the consultants need information, He was showing aggression yesterday now as well. So its now between two consultants in different hospitals and one of them is who said he didn't qualify for continuing care in December. If there is a meeting with me this time i will go with the information i now have.I should no hopfully whats going to happen next week.
chip
I so feel for you.
Your plan seems to me the right thing to do.
You are correct, there are so many people who right now, and in the future, will have to deal with this difficulty.
So I'm bumping this thread!
Do let us know the outcome.
Good luck!
knackered
I so feel for you.
Your plan seems to me the right thing to do.
You are correct, there are so many people who right now, and in the future, will have to deal with this difficulty.
So I'm bumping this thread!
Do let us know the outcome.
Good luck!
knackered
Dig your heels in
Dear Chip
First of all please forgive me if anything I write is inappropriate, I've not been on TP for some time and am not familiar with your circumstances.
I believe I'm right in saying Social Services are responsible for social care and the NHS is responsible for medical care.
Therefore it would appear to clearly be an NHS problem and they must take responsibility for finding a suitable placement.
Unfortunately, finances can confuse the issue considerably. If you're self funding the powers that be will be quite happy to sit back and let you sort things out - don't (unless of course you feel your loved one is at risk).
May I suggest that you ask for a Continuing Care Assessment, and be sure to attend and make your thoughts known. (I have recently done this with Mum and when the notes are typed up I'm going to receive a copy and can give my observations. I can also attend the meeting that decides the outcome!)
My Mum is in a private locked dementia unit, with Social Services contributing and currently me paying top-up but Continuing Care has been granted for the 6 months before she moved into this Unit - and I'm battling for it to be continued as nothing - other than the door being locked - has changed. Mum is no better in her mental health. The home is not perfect by any means BUT Mum is 'settled' and I really do not want to move her and money's all out so it's really important to try to win this case.
Don't be afraid to talk with your local MP - forget the politics - they like to help people, it's good for their image.
Hope this is of some use!
Be good to yourself - you deserve to, and will I am sure get through this.
Luv
Ellie
Dear Chip
First of all please forgive me if anything I write is inappropriate, I've not been on TP for some time and am not familiar with your circumstances.
I believe I'm right in saying Social Services are responsible for social care and the NHS is responsible for medical care.
Therefore it would appear to clearly be an NHS problem and they must take responsibility for finding a suitable placement.
Unfortunately, finances can confuse the issue considerably. If you're self funding the powers that be will be quite happy to sit back and let you sort things out - don't (unless of course you feel your loved one is at risk).
May I suggest that you ask for a Continuing Care Assessment, and be sure to attend and make your thoughts known. (I have recently done this with Mum and when the notes are typed up I'm going to receive a copy and can give my observations. I can also attend the meeting that decides the outcome!)
My Mum is in a private locked dementia unit, with Social Services contributing and currently me paying top-up but Continuing Care has been granted for the 6 months before she moved into this Unit - and I'm battling for it to be continued as nothing - other than the door being locked - has changed. Mum is no better in her mental health. The home is not perfect by any means BUT Mum is 'settled' and I really do not want to move her and money's all out so it's really important to try to win this case.
Don't be afraid to talk with your local MP - forget the politics - they like to help people, it's good for their image.
Hope this is of some use!
Be good to yourself - you deserve to, and will I am sure get through this.
Luv
Ellie
Dear Chip
RIng the Dept of Health I phoned them yesterday about my dad and they were really helpful. It is strange isn;t it that the NHS dont like to talk about CHC they evade the issue. My dad gets a dual package from SS and NHS I also handle the direct payment side of things. It is complex and I am told this is unusual but it allows my dad to stay at home with support. I did a lot of homework before the meetings and was heavily armed with the right info the Dept of Health Website is really helpful and you can ask for all the Publications free of charge from the Publications dept.
The most important thing is that your husband is placed at the centre of the care scenario and that his needs are properly assessed and the right place found for him. I hope you have success it should not be a decision that is driven financially.
Good luck keep us uptodate chip.
Angela
RIng the Dept of Health I phoned them yesterday about my dad and they were really helpful. It is strange isn;t it that the NHS dont like to talk about CHC they evade the issue. My dad gets a dual package from SS and NHS I also handle the direct payment side of things. It is complex and I am told this is unusual but it allows my dad to stay at home with support. I did a lot of homework before the meetings and was heavily armed with the right info the Dept of Health Website is really helpful and you can ask for all the Publications free of charge from the Publications dept.
The most important thing is that your husband is placed at the centre of the care scenario and that his needs are properly assessed and the right place found for him. I hope you have success it should not be a decision that is driven financially.
Good luck keep us uptodate chip.
Angela
Told today that it is a possibility they will be sending him back to the nursing home as the HSO says that nursing homes should be able to look after him. (he had a fall this morning in the hospital)they say as well he now cant sit he just flops down and the way a nursing home to stop that would be to put him in a wheelchair and strap him in it. Which would cause him to get aggitated! I was also told there is no continuing care places so he will have to go to a Nursing Home. I phoned up the Social Worker he said again no nursing home will take him. The hospital said something about the nursing home getting in more nurses to look after him, but they and i don't no how that works.The nursing home already have been told he wouldnt be back there.But this is only a possibility. The consultant comes back this week from the other hospital he was at and they are waiting to see her about it. Oh ! what a mix up they are causing and its putting me off the hospital, and i'm ment to be going there myself next month. I'm getting told different things all the time by them. Enen the staff nurse said its so unsettling.
Chip, it's ridiculous the way you're being messed about.
They need to have a full case conference with you present and make some decisions, instead of arguing among themselves.
Hopefully when the consultant gets back that will happen.
They need to have a full case conference with you present and make some decisions, instead of arguing among themselves.
Hopefully when the consultant gets back that will happen.
