Continuing Care query

[BeckyJan]

Hello:
I am sure there have been other threads about this but I cannot find them in 'search'!

Can anyone advise if Continuing Care is granted, what rights does an individual (and immediate relative) have in choosing their care home. I am wondering if the PCT or NHS can intervene because of costs.
This could happen in our case (if not immediately sometime in the future). I have only one NH in mind and it is obvious the Assessment Unit cannot keep David for months! If my preferred NH do not have a bed will I be forced to find another inferior one? How much can I dig my toes in?

Any advice or comments welcome.
Thanks Jan

 

[Brucie]

We recently managed to get Continuing Care funding for Nina's Dad and we were given a list by the PCT of local nursing homes that would be able to cope - not necessarily ones that had space, however. We looked at a couple but eventually managed to get the Continuing Care in his own home as that was what he desperately wished - which is working brilliantly, despite grave misgivings by the PCT.

He doesn't have dementia though.

I'd assume that, as long as a care home is in the area served by the PCT and that the costs were at an appropriate level, you could choose.

Suitable homes depend on the stage of the dementia, and their ability to cope.

... just my thoughts...

 

[CraigC]

Hi Jan,

Here is a links to the Alzheimers Society Website.

http://www.alzheimers.org.uk/site/scripts/documents_info.php?categoryID=200203&documentID=399

This page gives an overview and links to some useful factsheets.

Have dabbled with continuing care with both mum and dad I got battered down by two different PCTs quite early on. The key seems to be the degree of nursing care required but it varies with different local authorities. It is a drawn out process but I'm sure the helpline and others on the forum can help you through the hoops. Don't give up as easily as I did

The alzheimers society help line may also be able to help/advise on specific issues like this:

http://www.alzheimers.org.uk/helpline

Kind Regards
Craig

 

[BeckyJan]

Thank you Bruce and Craig.
I have downloaded lots of stuff and am beginning to gain more insight into what Continuing Care is all about.

I do not worry about acceptance or not of our case. I know the nursing staff are much in favour but they admit David is 'borderline' - but as he is deteriorating rapidly I assume that if we are rejected now I can ask for an early review.

My main concern is, if CC is given, will the choice of NH be taken out of my hands? Horror I have downloaded Help the Aged Factsheet 20, paragraph 3.7 states 'The final decision rests with the PCT'.

There is only one NH in our region that I want him to go to - can I insist on this and only this one? If not, how do I get out of CC - then funding everything myself (with hope that I can get a review after a few months once David is established in chosen Home).

Surely we have a right to determine where our loved ones are to live.

Following on this I may then need some advice about how and if I can manage all this at home. It may prove difficult as David does need care overnight - there may be difficulty in finding the right carers/nursing staff for this 24/7.

Why oh why do we have to struggle with these issues when tangled with emotions ?

Best wishes Jan

 

[needsomecake]

Hi Jan

My experience of CC with my Dad was that he was awarded it and then it was up to us to choose somewhere for him to go. I don't remember anyone from the PCT telling us they would not pay for certain placements. In the end he went into a private NH - not a hugely expensive one, but nonetheless it was the best one in the area.

Home care was not really an option as the most the local PCT could offer was 2 carers/nurses visiting 4 times a day. It had to be two carers together as dad needed lots of help to move. Their view was if dad required more than this then residential care should be the first option. Night cover was not offered.

I get the distinct impression it depends where you live as to how rules are applied.....

I hope the assessment works out in your favour. Dad was refused the first time round (he was assessed in hospital) and then again at home. He got the CC award second time round.

Best wishes - hope dad's experience gives you useful information.

 

[jenniferpa]

Jan I found this on the Department of Health website

"2.9 What guidance is available around choice of care setting/care home given the economical difference in costs associated to both when the PCT is responsible for funding?

Answer
Whilst there is no specific guidance to the NHS on choice of care setting in relation to NHS Continuing Healthcare, as with other NHS care – and NHS Continuing Healthcare is NHS care – PCTs should balance an individual’s preferences with the resources that they have available, subject to always meeting key assessed needs.

The NHS Funded Nursing Care Practice Guide 2007 reminds PCTs that 'In all cases the individual/carer/representative is responsible for choice of care home.' (Para 36).

In addition, the draft Commissioning Framework for Health and Well Being proposes that choice should become available across all services (para 2.3).

Finally, the National Framework makes clear that, where an individual who has previously received a Direct Payment becomes entitled to Continuing Healthcare, PCTs should take the individual’s preferences into account wherever possible (para 77).

PCTs should have processes in place for resolving disputes where the individual’s preferences involve substantial additional costs."

From here http://www.dh.gov.uk/en/SocialCare/Deliveringadultsocialcare/Continuingcare/FAQ/DH_082591#_9

So I think in your place I would be asking what procedure your PCT has in place for "resolving disputes" as per the last sentence above, because while they may not be able/willing to speak about your particular situation at this time, this is something they should have in place for everyone. I wouldn't be surprised if they didn't though - sometimes if it's not mandated (i.e they "must" have a procedure) they leave it until they have an issue. Worthwhile asking though, and it might just make them aware that you are aware of your rights.

Love

P.S. This all was linked from http://www.dh.gov.uk/en/SocialCare/Deliveringadultsocialcare/Continuingcare/index.htm if you want a little light reading.

 

[BeckyJan]

Wonderful Jennifer - thank you so much for your care.

I will absorb it all later. I think the PCT panel meet next week and I know David is borderline. However I shall probably put an appeal in fairly quickly, but may wait for the NH assessment too.

I am having lots of support from the nurses in the Assessment Unit too.

My main concern is that David is put in a home of our/my choice and your research has given me more hope.

Love Jan

 

[BeckyJan]

Hello 'needsomecake' (wonderful name!!)

I have just read your post and it seems your Dad and my husband are similar cases. I value your comments about nursing at home and I suspect we would have similar drawbacks with help.

I am preparing myself for an appeal!! But my main concern is to get David settled and reasonably happy.

Love Jan

 

[Marianne]

My father was granted fully funded care whilst in hospital last June. I was then asked which home I had chosen, there was no problem about my choice of home. The home I had chosen was not the cheapest by a long way but he unfortunately died a month later.

My dad had been in care for just over two years as a self funder so after he died I applied for a Retrospective Review which was held last November and I was granted fully funded CHC from when he first went into care in 2005.

When he first became ill and diagnosed in hospital as suffering Vascular Dementia I was told by the Social Services at the hospital to find an EMI home for him, and he would have to pay for himself. I accepted this.

Now I know that a patient in hospital should have an assessment carried out for their healthneeds and for CHC before discharge. My dad never had an assessment done by health officials he was just means tested by Social Services.

There is a lot of information on the internet about CHC read everything you can and avoid solicitors who want you to send money up front.

 

[connie]

Hi Jan, I know every case is different, but this is what happened with Lionel.

He was already in the care home of his choice - self funding.

When I did his application for Continuing Care, along with his CPN, a lady did come out to us from the local PCT. Her concerns were that Lionel needed nursing care and he was not in a nursing home. She also told me of a home, newly refurbished for Continuing Care residents.

I had it put on the forms that whatever the outcome, and provided that Orwell House could cope, I did not wish Lionel to be moved. We were fortunate. Continuing Care with Nursing element was granted, and he was able to stay where he is.

Lionel's care home assure me that they will do their utmost to keep him, come what may. Must admit the CPN was quite surprised.

 

[sue38]

Now I know that a patient in hospital should have an assessment carried out for their healthneeds and for CHC before discharge.

Would you mind telling our CPN/care co-ordinator this, as I have told him till I am blue in the face, and he just keeps harping on about a financial assessment.

I know that my dad is very unlikely to qualify for Continuing Care, but, I want them to tell me why not, that way when and if things change I can refer them back to it.

Just remembered you can't speak to our CPN because he is off sick... again...

Jan, it sounds as though the Nursing staff are 'on side' which is good. Ideally it would be better if David were to be awarded CC for the home of your choice from Day 1. However I understand when you are say that if that is not going to happen you would prefer he were turned down for CC, he goes to the home of your choice, and then you appeal the decision and request that he stay where he is on the grounds that a move would be unsettling, as Connie did with Lionel. Have I got that right?

 

[jenniferpa]

I cannot believe, Sue, that they are still trotting this out. Do you have the chapter and verse on this or would you like me to find it for you (I've seen it sometime today)?

Love

 

[BeckyJan]

the Nursing staff are 'on side' which is good. Ideally it would be better if David were to be awarded CC for the home of your choice from Day 1. However I understand when you are say that if that is not going to happen you would prefer he were turned down for CC, he goes to the home of your choice, and then you appeal the decision and request that he stay where he is on the grounds that a move would be unsettling, as Connie did with Lionel. Have I got that right?
__________________


Yes Sue you have got it right!!!!

It seems wrong to be thinking this way BUT .....

What a muddle all this is - I just want to curl up and be like Oscar, my cat, - he has nothing to worry about but food and basics.

Love Jan

 

[BeckyJan]

but, I want them to tell me why not, that way when and if things change I can refer them back to it.

I have just re read this post - like you Sue, if David is refused CC, I would like to know 'why not'.

Love Jan

 

[sue38]

Hi Jennifer,

Thanks, I think I have it covered, and will check out the links you have posted, but if there is anything else you have, I would be grateful. Bit of a hectic day today (non AD related) and head a bit all over the place. Snow not as bad as in Bolton for Tina, but just half an inch was enough to bring the roads to a halt and a 20 minute journey into work turned into an hour and 20 minutes; been on the back foot ever since!

Jan, oh to be Oscar!

 

[Linsey]

Thanks for all the useful information in this thread.When Arthur is having his assessment I now know that Rick and I need to stress our need for CC.

The knowledge available on this site is invaluable.Great stuff.