Who Pays For Elderly Mentally Infirm Nursing Care?

[Rob S]

I have contributed to other threads about paying the cost of nursing care for elderly people with alzheimers and other medical conditions, but it's time to start my own thread on this subject.

My father suffered a stroke in 1996 which affected the left side of the body. His mobility was affected and he learnt to walk (albeit very slowly) again. In recent years arthritis has ravaged his good limbs and he is now at the stage of being unable to walk at all. Vascular dementia has also taken its hold on him and his short term memory is shot to pieces. He is prone to aggressive outbursts of both language and attempting to hit anyone in range. It's very sad to see a man who was once very proud and served his country for 37 years in the RAF to be reduced to this.

We managed to get my parents into very sheltered accomodation in March this year. It is a new building built in 2002 and they have their own self contained flat, but with staff on hand to keep an eye on them. But my fathers condition has rapidly deteriorated and he was admitted to hospital on the 5th June with an infection. This has cleared up but the hospital will not discharge him back to his home because they don't have the expertise or facilities to look after him properly. He has to be hoisted in and out of bed now.

Enter social services and the hospital authorities into the situation. Their only interest has been the family assets. My parents sold their house after moving into the sheltered accomodation and because of this social services have deemed it the family responsibility to find a suitable home and fund it. We have applied to one home but they turned my father down because of the advancement of his condition.

We had a meeting with the hospital staff and social services and they laboured the point it was a family responsibility to sort this out. There was no mention of continuing NHS care, so they were most surprised when I mentioned this. The assessment for continuing NHS care has now been completed and it was no surprise that my father was declared as not eligible. Suffolk PCT has a reputation for not paying for this care and they are second only to a PCT in Derbyshire when it comes to not paying out for NHS care. They only fund 57 patients in the whole of Suffolk!

So now battle commences. I am grateful to Emma and Bankover for the support they have given me in this matter, and I will be taking them up on their kind offers of help, but anyone else out there who can pitch in will be most welcome.

It is a disgraceful situation that NHS continuing care is effectively a post code lottery and it shouldn't be like this. It is also wrong that care costs in Scotland are funded by the state but not in England and Wales. Shame on the government for allowing this to happen.

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[emmaf01]

Hi Rob- don't worry, you are actually in the right. Your father is ill and needs care.

Who did the assessment for continuing care? The PCT or Social services?

Did they give you a copy of their decision/criteria?

Suffolk PCT are obviously trying to reduce their costs by ignoring their responsibilities- standard procedure for the NHS at present.

You will win, if you appeal their decision- I did! Cheque received yesterday!

Shout when you need a hand.

[Rob S]

Cheers Emma,

It was the PCT who did the assessment and I have now received a copy of their criteria and also the assessment panels decision and their reasoning behind why they stated my father does not qualify.

I agree with you about their tactics. Suffolk PCT have the second worst record in the country when it comes to accepting their responsibilities for paying for continuing NHS health care. They only pay for 57 patients in the whole county. It works out they pay for one patient in every 10000 residents in the county. Compare this to the PCT that covers Harrow in North West London who pay for 42 residents in every 10000 in the area that they cover.

The whole thing really is a post code lottery and there are something like 28 different criteria being used by PCT's across the country. A new national framework is being introduced on the 1st october but it will still need to be Coughlan compliant for it to be lawful.

[emmaf01]

That is the crux of the matter. It is the Coughlan ruling which must be followed. That is the law, and all the criteria the PCTs can cobble together mean nothing.

Pam Coughlan is leading a full life, with the help when necessary from her carers. She would not comply with half the criteria which the PCTs have created for themselves. And yet it is her needs which have provided the legal framework for continuing care provision.

[Rob S]

That's why I am confident that the PCT will eventually have to accept it is their responsibility to fund my fathers care costs Emma. The Coughlan judgement is very clear and it has been further reinforced by the Grogan judgement. Using the RNCC guidelines Pam Coughlan would struggle to get on the medium band of nursing needs, but she has paved the way for the rest of us to fight the NHS and get them to accept their legal responsibilities.

I find it amazing that despite the issue of updated guidance by the Department of Health in 2006, following the Grogan judgement, that Suffolk PCT have failed to change their criteria to ensure it is Coughlan compliant.

[emmaf01]

Well, after the Grogan judgment, PCTs were supposed to be going through all cases in their areas to FIND cases they may have missed.

I may be doing some PCTs a disservice, but I haven't heard of anyone being contacted by a PCT who think they may be able to qualify for continuing care. It certainly didn't happen in my case!

[kennythecelt]

The situation is not right and my sympathies are with you and your family.

Sefton Council lost a big case on the care issue. From what I remember they had to pay back substantial sums to families that were in the same situation as you.

[Rob S]

The saga rumbles on. I managed to get the matter referred back to the original assessment panle level as the information they were given was woefully inadequate. They met again on the 30th August but it has been deferred until this Thursday because they did not get the updated information in time. Just as well that I was expecting things to take their time

[Bigdess]

What was the length of your Fathers assessment period when in hospital.Assessment meaning physical needs/mental health.What treatment was your Father receiving for his viscular dementia.Do the panel base their decision on your Fathers needs,do they refer to the nusing assessment.

Whizzy

[Rob S]

Whizzy,

The original assessment was for 3 days and it was completed ( I use the term loosely) by nurses on a general medical ward. It comprised of a half page of scribbles which were neither signed or dated (in contravention of NMC guidelines on record keeping).

The assessment is based on a criteria decided by the Primary Care Trust and Strategic Health Authority, and this is the main problem. Their criteria will only determine if someone is eligible if they have a complex condition that is unstable and requires specialist nursing intervention. It flies in the face of the Coughlan judgement and is, in my opinion, unlawful.

[Bookworm]

Rob, sorry to butt in, I really have nothing constructive to add, but would you mind clarifying a few things? I ask this because as someone with no knowledge of this type of situation, I could barely follow the above, and thought that it might help others.

What does PCT stand for? Who are they, what do they do (or supposed to do), and who do they respond to?
What is the Grogan case?
What is the Coughlan case?

(Sorry, just worked out that PCT = Primary Care Trust)

Thanks in advance if you can answer.

[Bigdess]

Any entries made by nursing staff in patients notes/records are considered legal documents.All entries must include date and time entry was made,note must be signed twice ie signature of nurse and also name printed,and notes must be legible.Any barrister would pull nursing staff apart for shoddy documentation.Also the NMC take a very dim view of poor record keeping.Your Father should have been assessed by a consultant specialising in psychiatry of old age (geriatrician) for specialist nursing intervention/care/treatment while he was an in patient in the medical ward.I am really susprised and indeed shocked that this was'nt done.

Whizzy

[Rob S]

Originally Posted by Bookworm

Rob, sorry to butt in, I really have nothing constructive to add, but would you mind clarifying a few things? I ask this because as someone with no knowledge of this type of situation, I could barely follow the above, and thought that it might help others.

What does PCT stand for? Who are they, what do they do (or supposed to do), and who do they respond to?
What is the Grogan case?
What is the Coughlan case?

(Sorry, just worked out that PCT = Primary Care Trust)

Thanks in advance if you can answer.

Hello Bookworm,

The Coughlan case is the Court of Appeal case involving Pam Coughlan. She was badly injured in a road accident in the 70's and is a tetraplegic. She took the NHS to court and won when they tried to close down her accomodation that she was living in and said she would have to move into a home managed by the local authority. This meant she would have to fund her care costs in full.

BBC NEWS | Programmes | Panorama | NHS care criteria 'fatally flawed'

This site gives a lot of background information about this case and the whole issue of NHS continuing care.

NHS funded Continuing Care and the Coughlan case

The Grogan case was along similar lines where Ms Grogan challenged her local PCT and SHA (strategic health authority) over the criteria they used to assess her case.

Our response to the Grogan case (25.01.06)

HTH,

Rob

[Cymraeg]

Thanks for this post Rob S.
We are going thru a similar situation ourselves and I knew nothing of Coughlan until now. This will really help us.
We contacted our local authority and the conversation went something like this

"Hello,I'm enquiring about EMI homes etc in the borough"

"They'll have to sell their house"

"Who will?"

"Whoever needs the care!"

"But we're just enquiring about what's available and the various processes"

"Yes, but they'll have to sell their house"

This actually happened. No "Who is it and what care do they need?" or any other questions. Just a straight "sell the house" line.
As for the hospital,we have a 76 year old relative who's just had a hip operation and she fell in the ward the other day.

Makes a mockery of the notices they have everywhere "We will not tolerate abusive behaviour to our staff"

Once again,thanks for the post , the links and good luck to everyone in this situation.

[Rob S]

Cymraeg,

They will misinform you at every oportunity so be prepared for a long hard battle. Another site that will be of use you is this one:-

Free nursing care information

It's a very good forum with some very knowledgable contributors and lots of support from others in similar situations.

Good luck in your battle too and thank you for the kind wishes.

[Rob S]

I thought I would update you on the latest. My father had another assessment in February. Unsurprisingly he was turned down again, so it was referred to the local Strategic Health Authority for an independent panel review which I attended yesterday. I submitted that my fathers primary needs were health needs and the NHS should be paying. The panel agreed!! So, after a long and hard battle (not as long as some people who have been fighting far longer than I have) we have won!! To say I am elated is an understatement!!

The panel have stated there should be another assessment in light of the fact my fathers health has deteriorated since the last assessment, so I am still on my guard, but should they try and say again that my father does not have primary health needs it will be a lot easier for me to challenge them, as all I will have to say is "what has changed in my fathers needs since the decision of the independent review panel"

[emmaf01]

Congratulations Rob- it is great when you win, after all you are winning care for your father.

I understand why you are on your guard regarding the fresh assessment. The problem is that in general the assessors are not fully aware (or made aware) of the legal situation, just being told to tick boxes. Try to be there for the assessment and lead them through it if possible (this may irritate the living hell out of them, especially when they find you know more than them).

It still amazes me that people every day are tricked into thinking they need to pay for their care. It is horrendous.

[Lula]

Hi there, I just stumblerd upon this thread, but it has been a wealth of information, especially as my friend has been here today and was telling me that his old uncle has to go into a home because he has alzheimers and they have said that he will need to sell his house, and after reading this, I dont think he will, so I will be passing the information on.

Well done Rob and good luck to you all.

[Rob S]

Lula,
Please don't hesitate to contact me if you need any assistance. I am fed up with people who are vulnerable being hoodwinked by the authorities. Is your uncle living in the house on his own?

[Lula]

Actually it is my friends uncle and he was living there alone but they have moved him, he was wandering the streets in his pj's and getting himself locked out, poor old thing, my friend has a meeting next week with the Social Services and the hospital to see what is the best solution for him.