Crisis!

blue sea

Registered User
Aug 24, 2005
270
England
Going through a difficult time at the moment as dad now in hospital as a result of continuing aggression. Applying for NHS continuing care. Any advice / support appreciated as feel very stressed by all this.

Blue sea
 
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Brucie

Registered User
Jan 31, 2004
12,413
near London
I'd never heard of NHS Continuing Care until it was brought to my attention by my local contact at the Alzheimer's Society.

It appears the local Primary Care Trust were in the same position, because my contact had to walk them through the document and short list of criteria that forms the basis of being eligible, or not. At that time, their own guidelines said that they would be writing formal procedures for NHS Continuing Care a couple of years later.

Once it was pointed out to them that my wife met at least 3 of the [I think] 5 possible criteria - only one of which had to be met anyway - the funding was agreed quite quickly. It is reviewed annually, though it is not expected that the situation will change - certainly not improve, of course healthwise.

So I'd suggest getting help from AS. I was extremely fortunate at the time that my particular contact was at the Society, and specialised in Early Onset patients, so knew more about NHS Continuing Care than most.

The doctor I had thrown off Jan's case had been pressuring me to find a care home - paid for by me - that in my area would have cost upwards of £35,000 per year. That would have been an impossibility, and the pressure of that [because they wanted to free up her place at the assessment centre] was appalling.

Good luck - try and get the Society involved.
 

Brucie

Registered User
Jan 31, 2004
12,413
near London
I'd go so far as to say that the single thing that has helped most in the past 15 years that Jan has developed dementias, is the Alzheimer's Society's help in getting us NHS Continuing Care.
 

Brucie

Registered User
Jan 31, 2004
12,413
near London
thanks Nada, the '5 criteria' I mentioned was based on memory at a very stressful time. There may have been more at that time, too.

It is good to have the AS list used for assessment.

Sad though it is, it is also useful to be able to see that Jan has definite major problems in all of the 10.
 

Sandy

Registered User
Mar 23, 2005
6,847
NHS Continuing Care

Hi Connie and Blue Sea,

When I was looking into what the requirements were for continuing care for my father-in-law (who has both AD and myeloma), I contacted his Primary Care Trust (PCT) as each PCT should have their own guidelines formalised (I think there is a move to try and agree national guidelines, but they are administered at PCT level).

The PCT did not have these guidelines on their web site, but they sent me a 10 page (or so) document through the post within a few days. It was very useful and I'm fairly sure that should my father-in-law need access to fulltime care that we could make a good case.

I would suggest contacting your PCT and getting a copy of any guidleines that apply.

Take care,

Sandy
 
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inmyname

Guest
Surely those criteria would apply to almost every dementia patient who is unable to care for themselves in their own home and needs to be cared for in a care home
 

blue sea

Registered User
Aug 24, 2005
270
England
Thanks for your responses so far, which are very helpful. I shall take your advice and contact AS once I have studied the booklet. Will keep you posted.
Blue sea
 

Brucie

Registered User
Jan 31, 2004
12,413
near London
from document said:
To qualify for continuing NHS health care, a person will normally have a high level of needs in a number of the categories described by the local assessment tool. It is up to the local NHS to decide how many categories need to be fulfilled and a panel will normally look at whether individual cases meet the continuing NHS health care criteria. However, there has been a great deal of criticism of both the criteria used by health bodies and the application of the criteria in
This is the nub of the matter. The folks who judge the need are those who will be paying for the care. Things also seem to vary from region to region.

Finally, nobody seems to tell the families that this option may be available - besides AS.

First step is, as Nada says, to request more information locally:
The general policy on who is entitled to continuing NHS health care will be explained in your local eligibility criteria. These can be obtained from your primary care trust or strategic health authority.
 
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inmyname

Guest
Sounds like another NHS post code lottery

If they can fool you into thinking you have to pay they will!!!!
 

Brucie

Registered User
Jan 31, 2004
12,413
near London
Well, the simple fact is that, if you don't try the process, then you can't really talk with any authority about this subject.

Why not give it a go?
The general policy on who is entitled to continuing NHS health care will be explained in your local eligibility criteria. These can be obtained from your primary care trust or strategic health authority
 
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inmyname

Guest
No one should have to be put through such hoops

Either there is standard continuing care provision based solely on criteria already posted that applies throughout the country or we have a post code lottery which is utterly and totally unfair

We should all know upfront what we are and are not entitled too without any need to go through appeals/tribunals and most of all stress

Theres way too much stress just having a family member with AD
 

Brucie

Registered User
Jan 31, 2004
12,413
near London
I absolutely agree as well.

However.... that is not the situation at present. It is where we will all agree we should be.

That does not help all our relatives right now.

We have to work within and with the system as it is now if we want to be able to do anything to help our relatives before something more reasonable is introduced... if it ever is.

Then, we need to help the Alzheimer's Society build a wave of pressure to get the rules changed.

While at the same time using the system that exists, imperfect as it is.

While people don't know the NHS Continuing Care option exists, they can't use it. If relatively few people apply for NHS Continuing Care or few appeal against NHS Continuing Care decisions then the problem will appear to be a small one, not worth tinkering with.

If there is a large number of applications across the country, and decisions are appealed as well, then someone, somewhere will have to acknowledge it.

Point is, the people who read the Talking Point posts are already convinced. It is the people administering the system and the government that needs to be jump-started.
 
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inmyname

Guest
Maybe for starters we need a " name and shame " thread so that posters can list which PCTs are supportive of Continuing care

which ones are semi supportive and those who we would all have to fight an appeal against

Not everyone is going to have the intelectual abilities to fight their corner so someone who has already done it to guide them would be of great assistance
 

Norman

Registered User
Oct 9, 2003
4,348
Birmingham Hades
People are very quick to condemn the government for the state of the NHS,Health and Social Services etc etc.
Funny I can never find any one who voted for the present government
Norman :D
 

Brucie

Registered User
Jan 31, 2004
12,413
near London
Sandy said:
When I was looking into what the requirements were for continuing care for my father-in-law (who has both AD and myeloma), I contacted his Primary Care Trust (PCT) as each PCT should have their own guidelines formalised (I think there is a move to try and agree national guidelines, but they are administered at PCT level).
The PCT did not have these guidelines on their web site, but they sent me a 10 page (or so) document through the post within a few days. It was very useful and I'm fairly sure that should my father-in-law need access to fulltime care that we could make a good case.
I would suggest contacting your PCT and getting a copy of any guidleines that apply.
and
Brucie said:
First step is, as Nada says, to request more information locally:
Quote:
The general policy on who is entitled to continuing NHS health care will be explained in your local eligibility criteria. These can be obtained from your primary care trust or strategic health authority.
Both quotes above suggest the doing of something positive to forward one's case. If people don't attempt to find out whether they meet the local criteria, how will they ever know whether or not the appropriate organisation will provide funding or not?

A lottery has been mentioned previously in connection with funding and facilities. That is certainly an appropriate comparison in one way: if you don't buy a ticket - you 100% can't win. If you try, then at least you are in with a chance.