NHS continuing care for dementia

JPG1

Account Closed
Jul 16, 2008
3,396
That doesn't come into effect until April 1st 2013. Do you have the current link?
For information, I've just seen that it says on the link that you posted, crazyfish:

"These documents are intended for use by clinical commissioning groups from 1 April 2013 however, PCTs can also use these with immediate effect since there is no change to the policy."

The important bit being that "there is no change to the policy".

http://www.dh.gov.uk/health/2012/11/continuing-healthcare-revisions/
 

crazyfish

Registered User
Oct 12, 2012
288
That doesn't come into effect until April 1st 2013. Do you have the current link?
HI jenniferpa,
yes I agree that this version dosn't come into effect until april fools day 2013 very apt.
But most people will have to deal with this version or a combination of old and new.
I have read the document it is more WORDY than previous versions .
That was to be expected.
More muddying of the waters.
Overall it seems that most major points are the same as the previous version.
However as you have read it perhaps you can tell us how you have interpreted it and what the major differences are.
That would be a help to us all.
THANKS.
MICK
 

Jackie3

Registered User
Nov 27, 2012
14
Oldham
Hello again. Thank you to all for your advice. I am glad too that the subject has opened up as the NHS can't keep CHC to themselves. My mum is now so bad that my dad has decided that he can't cope anymore and he rang his social worker this morning (getting hold of her 1st time was a success in itself). Mum had been sat in the same chair for 2 days refusing to move, eat, take medication or go to the toilet. She dozed and shouted intermittently. The social worker found an 'emergency' place at a care home and the 3 of us have spent the afternoon there settling her in. The staff were very good and welcoming so that's reassuring as my dad felt awful like he's let her down. I did notice leaflets in the home about CHC so I will be pursuing that with them if I get nowhere with anyone else.
Mum is self funding as they had to sell their home last year and move into a Housing 21 extra care complex when she fell down stairs and broke her hip. Her share of the money is being used to pay for her care. It is going down fast and my dad has estimated it will be gone by the end of January - sooner now that she will be paying £400 per week for this care home place.
The funding issue is only part of the story as when she was in the Royal Oldham hospital 2 weeks ago with e-coli, septacemia and a UTI they 'forgot' to give her regular medication for Alzheimer's, arthritis, osteoporosis and cancer (she's had the lot!) for 7 days. I have made an official complaint and an investigation is now in place. Not only that but last year when she broke her 1st hip they pinned it in the wrong place and then had to do a full hip replacement which became infected for 2 months. She then fell on the ward whilst wandering in the night and broke her wrist! When she eventually got home she fell again and broke the other hip and ended up back in there where they pinned it correctly, hurrahh:rolleyes: Sounds unbelievable but it's all true and no wonder the dementia has gotten worse. Fortunately her heart is in tip top condition and keeps her going as does her feisty spirit:D
I am still going to push for CHC as she is clearly not a well woman and for the NHS to say otherwise is ludicrous. :) Thanks for listening (reading):) The next chapter is just beginning:confused:
 

crazyfish

Registered User
Oct 12, 2012
288
Hello again. Thank you to all for your advice. I am glad too that the subject has opened up as the NHS can't keep CHC to themselves. My mum is now so bad that my dad has decided that he can't cope anymore and he rang his social worker this morning (getting hold of her 1st time was a success in itself). Mum had been sat in the same chair for 2 days refusing to move, eat, take medication or go to the toilet. She dozed and shouted intermittently. The social worker found an 'emergency' place at a care home and the 3 of us have spent the afternoon there settling her in. The staff were very good and welcoming so that's reassuring as my dad felt awful like he's let her down. I did notice leaflets in the home about CHC so I will be pursuing that with them if I get nowhere with anyone else.
Mum is self funding as they had to sell their home last year and move into a Housing 21 extra care complex when she fell down stairs and broke her hip. Her share of the money is being used to pay for her care. It is going down fast and my dad has estimated it will be gone by the end of January - sooner now that she will be paying £400 per week for this care home place.
The funding issue is only part of the story as when she was in the Royal Oldham hospital 2 weeks ago with e-coli, septacemia and a UTI they 'forgot' to give her regular medication for Alzheimer's, arthritis, osteoporosis and cancer (she's had the lot!) for 7 days. I have made an official complaint and an investigation is now in place. Not only that but last year when she broke her 1st hip they pinned it in the wrong place and then had to do a full hip replacement which became infected for 2 months. She then fell on the ward whilst wandering in the night and broke her wrist! When she eventually got home she fell again and broke the other hip and ended up back in there where they pinned it correctly, hurrahh:rolleyes: Sounds unbelievable but it's all true and no wonder the dementia has gotten worse. Fortunately her heart is in tip top condition and keeps her going as does her feisty spirit:D
I am still going to push for CHC as she is clearly not a well woman and for the NHS to say otherwise is ludicrous. :) Thanks for listening (reading):) The next chapter is just beginning:confused:
HI Jackie,
all this sounds appalling .
If I were you I would be considering suing the NHS for negligence, maladministration & neglect.
My father has had a similar experience.
Ending up with a fractured hip after going into hospital with minor cuts and bruises.
I am using a local solicitor who has taken the case on a no win no fee basis.
You must get hold of all your mothers medical notes from the hospital.
Once you have read them you may be shocked to find you havn't been told the complete picture.
The max they can charge for this is £50.
Also your mum or dads home insurance may give cover for med negligence claims check it out.
MICK
 

NeverGiveUp

Registered User
May 17, 2011
1,035
Could you all just clarify a few things for me to make sure that I have understood everything correctly. At the time we didn't have PoA.

We should have been told that a CHC assessment was taking place

A CHC assessment should have taken place.

A care plan should have been drawn up

Notice should have been given of any meeting.

Any proceedures should have been explained to us.

What actually happened last time mum was in hospital, on previous occasions we have been seriously concerned about various aspects, last time we were frightened:

No mention has ever been made of CHC

No care plan has ever been drawn up.

Only item of concern was a financial assessment.

Discharge meeting was held with no notice, we were told to get to the hospital straight away for the meeting. When I said that I thought we should be given notice, a memeber of staff told me that we should get mum out of hospital very quickly as there was something on the ward that could kill her (mum had received unexplained injuries and I had seen a coffing removing a body during visiting hours, I didn't question the need for rapid discharge)

At the meeting variou people associated with mum's care just talked about mum's health, no mention was made of CHC.

No-one told the ward that mum was to be discharged.

Our only contact was with the hospital Sw and a person from the Dementia Intensive Support Team, the only interest was in relation to our family finances. We don't have any services so didn't see why this was required, particularly without a care plan of any sort.

The hospital SW appointed an advocate from AgeUK without consulting us, she just appeared one day. We don't know why this advocate was appointed.

Other,very serious things, happened.

A final discharge meeting was held at our home, the advocate was there acompanied by her manager, it was a very unpleasant experience, the manager explianed we had no rights in our own home that 'they' can do what they like (SS), 'they' can send anyone into our home and we couldn't stop that no matter how they acted, we could only complain through proper channels ( our concerns relating to something was very serious). The manager told us that, if we did not disclose our family finances 'they have ways of finding things out'. I replied 'including burglary?', no-one replied. At this meeting no mention was made of CHC. We felt intimidated and quite frightened, we had a witness present who had challenged what had been said but was shouted down, afterwards she expressed her shock.

I have found extreme reluctance from various organisations to obtain records.

Sorry this post is mega long but this post has caused an itch that I can't quite reach to scratch. :rolleyes:
 

JPG1

Account Closed
Jul 16, 2008
3,396
Your post is not mega long .... so, with your permission I'll answer your questions below, in red. I apologise in advance if it seems a bit odd to reply in that way, but it could otherwise take forever. I'm sure others will come along with their own opinions, and my point of view is only my POV.

Good luck - good wishes - and all the best!

Could you all just clarify a few things for me to make sure that I have understood everything correctly. At the time we didn't have PoA.

We should have been told that a CHC assessment was taking place Yes

A CHC assessment should have taken place. Yes

A care plan should have been drawn up Yes

Notice should have been given of any meeting. Yes. You should have been invited to each and every meeting too, and if the date(s) were inconvenient for you because of short notice, the meeting should have been reconvened - unless the mtgs were extremely extremely extremely urgent.

Any proceedures should have been explained to us. Yes, all procedures should have been explained to you before the process started, and you should have been given appropriate leaflet/information in writing, so that you had a chance to read and understand before - not after the event.

What actually happened last time mum was in hospital, on previous occasions we have been seriously concerned about various aspects, last time we were frightened:

No mention has ever been made of CHC

No care plan has ever been drawn up.

Only item of concern was a financial assessment. That often happens, or even often happens when people are not made aware of CHC. The mere mention of 'owns his/her own home' is often/usually followed by a financial assessment. No financial assessment should be carried out unless and until any CHC process has been completed and you are in agreement with the outcome. Because if you don't agree, you have the right to appeal.

Discharge meeting was held with no notice, we were told to get to the hospital straight away for the meeting. When I said that I thought we should be given notice, a memeber of staff told me that we should get mum out of hospital very quickly as there was something on the ward that could kill her (mum had received unexplained injuries and I had seen a coffing removing a body during visiting hours, I didn't question the need for rapid discharge) Not quite sure how to respond politely, to the suggestion that there was something on the ward that could kill her - so you should perhaps ask for a full explanation of that one! Did they mean a 'person' or a'bug' or 'something else'? The mind boggles - because that kind of phrase is something that is outside of my experience and my comfort zone.

At the meeting variou people associated with mum's care just talked about mum's health, no mention was made of CHC. There should have been mention of CHC, as you now know.

No-one told the ward that mum was to be discharged. So how did she come to be allowed to be discharged from the ward? Lack of security and safeguarding?

Our only contact was with the hospital Sw and a person from the Dementia Intensive Support Team, the only interest was in relation to our family finances. We don't have any services so didn't see why this was required, particularly without a care plan of any sort.

The hospital SW appointed an advocate from AgeUK without consulting us, she just appeared one day. We don't know why this advocate was appointed. Ask further questions about that one. What kind of Advocate? Why?

Other,very serious things, happened.

A final discharge meeting was held at our home, the advocate was there acompanied by her manager, it was a very unpleasant experience, the manager explianed we had no rights in our own home that 'they' can do what they like (SS), 'they' can send anyone into our home and we couldn't stop that no matter how they acted, we could only complain through proper channels ( our concerns relating to something was very serious). The manager told us that, if we did not disclose our family finances 'they have ways of finding things out'. I replied 'including burglary?', no-one replied. At this meeting no mention was made of CHC. We felt intimidated and quite frightened, we had a witness present who had challenged what had been said but was shouted down, afterwards she expressed her shock. I'm shocked too, to read your words.

I have found extreme reluctance from various organisations to obtain records. I have no knowledge of the kind of refusals you may have met - but each and every decision about someone who lacks the mental capacity to consent to anything, must be made 'in the best interests'. That is - at long long last - clearly explained in the latest revised version dated November 2012 of the National Framework for CHC. It's already in the Mental Capacity Act 2005, but has been ignored for so long now, in the 'best interests' of those who are not up to speed!! I have helped several people to write letters requesting copies of hospital/care home/social services records 'in the best interests' of their relative, even if they had no PoA in place. We have succeeded. That may be why I am pleased to see mention of those 'best interests' in the latest National Framework.

Sorry this post is mega long but this post has caused an itch that I can't quite reach to scratch. :rolleyes:
 

Jackie3

Registered User
Nov 27, 2012
14
Oldham
Your post is not mega long .... so, with your permission I'll answer your questions below, in red. I apologise in advance if it seems a bit odd to reply in that way, but it could otherwise take forever. I'm sure others will come along with their own opinions, and my point of view is only my POV.

Good luck - good wishes - and all the best!
I am just a novice at all this myself so value the advice I am receiving here. All I can say is DO NOT BE INTIMIDATED AND CHALLENGE EVERYTHING YOU ARE TOLD. DON'T LET THEM GRIND YOU DOWN cos that is what they hope will happen and you will go away. Good luck:)
 

Jackie3

Registered User
Nov 27, 2012
14
Oldham
HI Jackie,
all this sounds appalling .
If I were you I would be considering suing the NHS for negligence, maladministration & neglect.
My father has had a similar experience.
Ending up with a fractured hip after going into hospital with minor cuts and bruises.
I am using a local solicitor who has taken the case on a no win no fee basis.
You must get hold of all your mothers medical notes from the hospital.
Once you have read them you may be shocked to find you havn't been told the complete picture.
The max they can charge for this is £50.
Also your mum or dads home insurance may give cover for med negligence claims check it out.
MICK
Thank you that's interesting. I have read about being able to obtain medical records and will pursue. I do intend to take the matters further once the investigation is complete. Unfortunately no home insurance as dad didn't think they have anything worth insuring!
 

crazyfish

Registered User
Oct 12, 2012
288
Thank you that's interesting. I have read about being able to obtain medical records and will pursue. I do intend to take the matters further once the investigation is complete. Unfortunately no home insurance as dad didn't think they have anything worth insuring!
It dosn't have to be home insurance.
If your Dad's property was insured that might include cover.
Check it out.
MICK
 

Suzanne1

Registered User
Aug 30, 2008
2
Interesting!

My family are currently trying to get continuing care for my father in law. It is a very long process, & this thread is interesting because we were not told of the existenceof continuing care, we found out by chance very late. We have spent a fortune that we do not have on a very poor dementia care home. It has lovely staff, but they are so few in number that they can't possibly meet the needs of the clients, yet it was Social Services who insisted he go in there. We are paying £750 a week. We have had the checklist assessment done, and are waiting for whatever comes next.
Good luck to all of us in this thread!
 

crazyfish

Registered User
Oct 12, 2012
288
My family are currently trying to get continuing care for my father in law. It is a very long process, & this thread is interesting because we were not told of the existenceof continuing care, we found out by chance very late. We have spent a fortune that we do not have on a very poor dementia care home. It has lovely staff, but they are so few in number that they can't possibly meet the needs of the clients, yet it was Social Services who insisted he go in there. We are paying £750 a week. We have had the checklist assessment done, and are waiting for whatever comes next.
Good luck to all of us in this thread!
HI Suzanne1,
glad to hear you are getting somewhere .
Make sure you get up to speed on the CHC Framework and practice guidance.
http://www.dh.gov.uk/health/2012/11/continuing-healthcare-revisions/
This revised edition is valid now.
Get everything in writing from the NHS and make sure they follow their own guidelines to the letter.
MICK
 

jenniferpa

Registered User
Jun 27, 2006
39,448
Mick you say it's valid now but the link you provide says

It has been revised to reflect the new NHS framework and structures created by the Health and Social Act 2012 effective from 1 April 2013.
and

These documents are intended for use by clinical commissioning groups from 1 April 2013 however, PCTs can also use these with immediate effect since there is no change to the policy.

The document itself says "For implementation from 1 April 2013"
Perhaps I've missed something but that doesn't read as "valid now".
 

Witzend

Registered User
Aug 29, 2007
4,291
SW London
My family are currently trying to get continuing care for my father in law. It is a very long process, & this thread is interesting because we were not told of the existenceof continuing care, we found out by chance very late. We have spent a fortune that we do not have on a very poor dementia care home. It has lovely staff, but they are so few in number that they can't possibly meet the needs of the clients, yet it was Social Services who insisted he go in there. We are paying £750 a week. We have had the checklist assessment done, and are waiting for whatever comes next.
Good luck to all of us in this thread!
Do I take it you are self-funding? If so, SS surely can't insist on a particular care home - you are free to choose as far as you can, i.e. depending on whether a home has a place and is willing to take someone.
At least that is what I have always understood.
 

crazyfish

Registered User
Oct 12, 2012
288
Mick you say it's valid now but the link you provide says








The document itself says "For implementation from 1 April 2013"
Perhaps I've missed something but that doesn't read as "valid now".
HI JENNIFERPA,
If you scroll down the page to about half way the doc clearly states.

These documents are intended for use by clinical commissioning groups from 1 APRIL 2013 However PCT'S can also use these with IMMEDIATE affect since there is no change in policy.
Hope this helps.
MICK
 

jenniferpa

Registered User
Jun 27, 2006
39,448
With all due respect, did you miss that I quoted that part? I do feel that there's a big difference between "can" and "should".

Some PCTs may and some may not - I think a person would be unwise to hang their hat on this document at this time, unless they can get confirmation from their PCT that they are using it, and I feel it's misleading for you to state that it is valid at this time. JPG1 has already kindly given the links for the current ones above.
 
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crazyfish

Registered User
Oct 12, 2012
288
Did you miss that I quoted that part? There's a big difference between "can" and "should".

Some PCTs may and some may not - I think a person would be unwise to hang their hat on this document at this time, unless they can get confirmation from their PCT that they are using it, and I feel it's misleading for you to state that it is valid at this time. JPG1 has already kindly given the links for the current ones above.
HI Jenniferpa,
I think your knit picking here as it clearly states IMMEDIATE AFFECT.
And I understand IMMEDIATE to mean now.
However as I previously mentioned I have read the document and can find no major differences.
If you have could you please enlighten us as it would be of great interest to everyone.THANKS.
MICK
 

jenniferpa

Registered User
Jun 27, 2006
39,448
No Mick I am not nit-picking. I am simply pointing out that when you are dealing with something as difficult and potentially fraught as NHS CC it is extremely important to be accurate in your information.

I'll say it again: "PCTs can also use these with immediate effect since there is no change to the policy. " is not the same as "should" or "must". I was hoping that you had some further information to support your position. I'm quite prepared to accept that there may be and I was hoping that you would be able to provide this information. What you continue to do, however, simply restate a sentence which uses the term "can"- not must or should, can. I fail to see that that in and of itself supports your position as stated.

Think of it this way. Is the sentence "I can drink coffee" the same as "I must drink coffee"? Clearly it isn't.

As I say, you may be correct in your interpretation, but when you are attempting to provide even amateur advice (the only advice that this forum can provide), I feel it is irresponsible not to ask for clarification when it appears that the information provided is less than complete. I'm very sorry if I haven't explained this adequately.