Mum refused NHS continued healthcare at assessment - help please

[Farmergirl]

Im so so so angry.
Mum was granted NHS continued healthcare last year. Her alzheimers was pretty bad and she had a variety of other health needs.
At the one year review (which I was assured would be a formality) the health professional actually told me he recommended a continuance as mums condition had deteriorated so much (and he has recommended it on the form).
I have just received the decision by our CCG and Im astounded to say they have refused!
She has 1 severe and 6 high. She has now been determined to have clinical malnutrition and a complexity of health care needs. Needs prompting and continued chivvying to eat & take medication, needs considerable assistance to get up, dress, wash, toilet (doubly incontinent), despite medication is delusional, seeks inapproriate contact with men (any men), thinks her dead parents visit her.....
And the CCG have stated we did not find that you have a primary healthcare need at this time.

Naturally I will appeal it, but I need to vent....and I need advice.

 

[Sue J]

Have just posted on another thread re. 'purse centred care'. The assessors have obviously got glasses only with £ signs on as evidently they cannot assess need.

Sorry you have to continue to fight.
Vent away
Best wishes
Sue

 

[Farmergirl]

Thanks Sue.
I realise we are as a country heading for a NHS meltdown, but how much money do they want from her? She has already had to sell her house. We have so far spent over £40K and at over £900 per week for care the remaining £60K will very soon be done.
Shocking, shocking, shocking.

 

[Cornishman]

Hi - I'm in a similar situation with my mother: 15 years with AD; 11 years in a CH; CHC granted by the NHS without prompting in 2009 as her nursing needs were so demanding; 2012 did a routine assessment and then (based on that assessment a full 12 months before), removed her eligibility in 2013. We've been fighting the case ever since, with little success to date, but we haven't quite got to legal action yet, but I think we're on the brink of that. The appeal panel was a disgrace and was pure "kangaroo court".

Doubtless someone will be along soon to tell you once granted it is not guaranteed to continue, but it is the rationale and evidence to withdraw CHC that was so lacking in our case, apart from the woeful adherence to the due processes set out by the NHS themselves. The CCG just say "talk to the hand", and frankly more and more I think the CH are in cahoots with them based on recent experience and turning up incriminating documents (CH manager telling the Mental Health Partnership how much in assets she thinks my mum has, without our knowledge of course ), and by some of their actions that support this view.

I have prima facie evidence the CCG had a programme of reducing the number of CHC cases by the minutes of an internal meeting I located on the internet held weeks before they pitched up at the CH. They almost left the CH without seeing my mum at assessment, until I pointed out they hadn't actually done so, but had by then already hinted she would no longer qualify without actually visiting her in her room. I was so gobsmacked, I was just about speechless, which I'm now thankful for, as it wouldn't have been a particularly good conversation.

My mother had a primary health need (their words, not ours) established in 2009. They've yet to provide any compelling evidence that primary health need has gone.

It was a financially motivated decision , which as we hope to demonstrate, was totally unlawful.

Not that they care, but it's not as if we hadn't "done our bit", paying for care over 6 years previously, amounting to something in the region of £200,000+ (the family home).

Anger is wasted energy I know, but it's hard not to be, so I have great empathy and understanding for how you're feeling right now.

I'll keep in touch and help if I can.

Best wishes

 

[Farmergirl]

I think we may be in the same county........
Im in wadebridge. Whilsyt I cant name the CCG you can easily guess.....

Im so angry and will channel this anger. Im on FB at the moment and have been advised to contact Suzan Collins, who is a campaigner & writer.
Im also calling in favours from my media friends in the county.....

 

[Farmergirl]

Just to let you know this is now on facebook and my MP is now getting involved.

 

[AlsoConfused]

Well done you, Farmergirl!

 

[Onlyme]

Mum was assessed for CHC, it took 8 months for them to put it to panel, the information was very out of date so we complained and used the right of reply. We had the final decision which showed they never read our objections (and the homes) to the report and used information 6 years out of date from an old care plan.

We were told I officially that they only pay for the past two weeks of care before death.

 

[Cornishman]

We were told I officially that they only pay for the past two weeks of care before death.

...which is hogwash.

Everyone is entitled to free NHS care if they have a demonstrable need, whatever their stage of life.

For example: My mother (who is still alive) has been in a CH from 2003 to the present day, but only received CHC for the period 2009 to 2013.

 

[Farmergirl]

It is really ridiculous.
So - The CHC Nurse Assessor in his report (p34 of the DST) clearly states :
"It is therefore recorded that her current health status and level of need is unstable, complex and unpredictable. In my professional opinion she continues to meet the criteria for Continuing Health Care Funding as a primary Health need has been identified." (note my highlighted words).
And the covering letter from the CCG states
"The result of the assessment/checklist is that you are not eligible because we did not find that you have a primary health need that would qualify you at this time."

So - my interpretation?
Well, either its a generated letter that has been sent either in error or to test whether I am stupid or incapable of taking them on.
Or - they have decided against the recommendation of their own expert (the CHC Nurse Assessor), which begs the question, Do they think he is not qualified to do the assessment? In this case why are the NHS employing him (and the tax payers paying for him) or are they (the CCG) going against a qualified professional's recommendation on a purely financial basis?
Or have they changed the criteria? I think not as they have included the copy of the DST and she scored 1 severe and 6 high.
Anyone feeling cynical and thinking they are just trying it on?

Luckily my MP has been in touch and wants to take on the CCG, so - do I get him and the media involved now or do I do the appeals process first?

 

[starryuk]

Anyone feeling cynical and thinking they are just trying it on?

Yes, me!

Reminds me of insurers, who try to minimise payouts, assuming that most claimants will give up at the first refusal letter.

Ps, how do I find this on FB?

 

[Cornishman]

It is really ridiculous.
So - The CHC Nurse Assessor in his report (p34 of the DST) clearly states :
"It is therefore recorded that her current health status and level of need is unstable, complex and unpredictable. In my professional opinion she continues to meet the criteria for Continuing Health Care Funding as a primary Health need has been identified." (note my highlighted words).
And the covering letter from the CCG states
"The result of the assessment/checklist is that you are not eligible because we did not find that you have a primary health need that would qualify you at this time."

So - my interpretation?
Well, either its a generated letter that has been sent either in error or to test whether I am stupid or incapable of taking them on.
Or - they have decided against the recommendation of their own expert (the CHC Nurse Assessor), which begs the question, Do they think he is not qualified to do the assessment? In this case why are the NHS employing him (and the tax payers paying for him) or are they (the CCG) going against a qualified professional's recommendation on a purely financial basis?
Or have they changed the criteria? I think not as they have included the copy of the DST and she scored 1 severe and 6 high.
Anyone feeling cynical and thinking they are just trying it on?

Luckily my MP has been in touch and wants to take on the CCG, so - do I get him and the media involved now or do I do the appeals process first?

I'm just off out so can't quickly find the reference, but the National Framework for CHC explicitly states the recommendation of the assessors stated in the DST must only in exceptional cases not be implemented by the decision panel.

In the past I've received laughable "cut and paste" efforts in CCG correspondence too (completely wrong name on one occasion and referring to my mother as "my wife") - so who knows what they're thinking in your case?

Definitely worth a challenge in my opinion at appeal panel and onwards if necessary.

Just a thought - if you alert them to the disparities now, I'm guessing you'd just get a "corrected letter". I'm more an advocate of the "give them enough rope" approach myself. But obviously your call.

Good luck with it all.

 

[retiredcopper]

We received a letter from NHS CC last week after MIL had her review. It said that enclosed was a copy of the letter they had sent MIL - however no letter was enclosed. I rang them & they duly sent it out. The letter said she was only eligible to continue receiving NHS Funded NC - there was no copy of the Check List with it. I am right in thinking that we should get a copy aren't I? We received one (from the SW) after the first review 6 months ago. If they say they have sent it to MIL I will be very dischuffed as not only is she semi conscious now so unable to read it, her copy of the letter hasn't reached the Care Home yet!

 

[Chris-G]

Im so so so angry.
Mum was granted NHS continued healthcare last year. Her alzheimers was pretty bad and she had a variety of other health needs.
At the one year review (which I was assured would be a formality) the health professional actually told me he recommended a continuance as mums condition had deteriorated so much (and he has recommended it on the form).
I have just received the decision by our CCG and Im astounded to say they have refused!
She has 1 severe and 6 high. She has now been determined to have clinical malnutrition and a complexity of health care needs. Needs prompting and continued chivvying to eat & take medication, needs considerable assistance to get up, dress, wash, toilet (doubly incontinent), despite medication is delusional, seeks inapproriate contact with men (any men), thinks her dead parents visit her.....
And the CCG have stated we did not find that you have a primary healthcare need at this time.

Naturally I will appeal it, but I need to vent....and I need advice.

Hi Farmergirl,

Everyone mentions the CCG in the process yet it seems to me that the contractor (the CSU), to the CCG is often in fact in charge of everything.

By the way for the uninitiated, CSU's are currently "hosted" by NHS England. Paid by CCG's and in 2016, they will become private companies. I recently briefly saw (perhaps misunderstood), that a Council was doing or tendering for such paid work for a CCG.
Surely that is a conflict of interest as far as CHC funding is concerned.

See my local CSU's advertising below.

http://www.gemcsu.nhs.uk/gem/services/clinical

What is appalling is that cost and budgets are not supposed to enter into the process, yet look at the number of times that cost and cost effectiveness is mentioned in what is in fact an advertisement of the CHC services that the CSU provides.

I am so sorry that your experience is so similar to many others on these pages. But the National Framework was designed to enforce consistency.

It seems that the consistency that is required now is that everyone should fail to get CHC funding.......

As for advice, I am appalled at the dismissal of the case in such short measure when the National Framework insists that a comprehensive explanation of a decision to remove funding is a requirement.

One line certainly does not meet that. Yet that is how both recent refusals to continue funding have been communicated in my family's case. Perhaps you should ask for a proper explanation as is required under the usually ignored rules.

You could also ask for any and all copies of the Decision Support Tool. From what should have been completed at the assessment, to the actual copy that was sent to you.

You might well be surprised that, (if it has happened), the panel has altered the original DST and sent one to you that is not representative of the real facts. (Forgery and Fraud).

It is also not permitted to alter the DST under the rules of the framework.

Nor is it permissible to dismiss the recommendation of the team that completed the DST at the assessment, without exceptional circumstances.... None appear in your refusal letter do they?

There is so much more but this post has once again got too long.

 

[Chris-G]

I'm just off out so can't quickly find the reference, but the National Framework for CHC explicitly states the recommendation of the assessors stated in the DST must only in exceptional cases not be implemented by the decision panel.

In the past I've received laughable "cut and paste" efforts in CCG correspondence too (completely wrong name on one occasion and referring to my mother as "my wife") - so who knows what they're thinking in your case?

Definitely worth a challenge in my opinion at appeal panel and onwards if necessary.

Just a thought - if you alert them to the disparities now, I'm guessing you'd just get a "corrected letter". I'm more an advocate of the "give them enough rope" approach myself. But obviously your call.

Good luck with it all.

Hi Cornish man,

My dad got a 'good' refusal.... "The panel examined the COMPLEX AND INTENSE NEEDS contained in the DST and have decided that at this time Mrs XXX does not meet the criteria for NHS CHC funding at this time".

Or an earlier one.... "Because her behaviour was generally unpredictable, her needs were felt to be predictable because staff knew she likely be unpredictable"..... "The panel felt that there was no unpredictability in the domain."

The annoying extra in this is that it does not make any consideration of the fact that she was already in receipt of funding and that it was being stopped. (as appears the case with Farmersgirl).

Cut and paste.... ha! (I hold five different edited and cut and pasted copies of the latest DST that led to this refusal).

They cant even do that properly and actually hide what they do wrongly.

 

[Chris-G]

We received a letter from NHS CC last week after MIL had her review. It said that enclosed was a copy of the letter they had sent MIL - however no letter was enclosed. I rang them & they duly sent it out. The letter said she was only eligible to continue receiving NHS Funded NC - there was no copy of the Check List with it. I am right in thinking that we should get a copy aren't I? We received one (from the SW) after the first review 6 months ago. If they say they have sent it to MIL I will be very dischuffed as not only is she semi conscious now so unable to read it, her copy of the letter hasn't reached the Care Home yet!

Hi,

Our CSU on behalf of the CCG actually refuses in their standard letters, to automatically send copies of the Checklist or DST to patients or their representatives. That is against two or more mention of the need to automatically send the DST to patients and representatives.

We recently ran out of time to make a local appeal to the CSU... yes an appeal to a soon to be private company.... solely because they kept refusing to send the DST to the patient, because it was his daughter that kept asking for it to be sent... not to her but to the patient.

They insisted that; a brain injured man with double leg amputations and confusing infections and pain subdued by morphine as a result, that required further surgery to correct, who also had a UTI that further confused him and of course the inability to write due to arthritis: had to write to them explaining why he required his god given automatic right to the DST to be met.

They quoted chapter and verse that the data protection act meant that they did not need to comply with our wishes on his behalf. Yet if they actually knew what they were doing they would know that case law has long since altered that and that any close relative or friend can ask for information to be sent to someone (but not to themselves), on their behalf.

They even ignored the chapter of that ruling from the ICO website, for several weeks after I had sent it to them.

Then the next trick was that the patient had to be the one that made his own local appeal because their six year old records showed that he had the ability to make decisions.

Being able to decide what to have for lunch or if he will get out of bed today is not the same as understanding an entire raft of legislation and it's associated and misused rules.
Yet that is how the CSU's business manager, that knew nothing about him (except what was recorded in a poorly cut and paste edited and altered DST, judged it.

 

[Chris-G]

It is really ridiculous.
So - The CHC Nurse Assessor in his report (p34 of the DST) clearly states :
"It is therefore recorded that her current health status and level of need is unstable, complex and unpredictable. In my professional opinion she continues to meet the criteria for Continuing Health Care Funding as a primary Health need has been identified." (note my highlighted words).
And the covering letter from the CCG states
"The result of the assessment/checklist is that you are not eligible because we did not find that you have a primary health need that would qualify you at this time."

So - my interpretation?
Well, either its a generated letter that has been sent either in error or to test whether I am stupid or incapable of taking them on.
Or - they have decided against the recommendation of their own expert (the CHC Nurse Assessor), which begs the question, Do they think he is not qualified to do the assessment? In this case why are the NHS employing him (and the tax payers paying for him) or are they (the CCG) going against a qualified professional's recommendation on a purely financial basis?
Or have they changed the criteria? I think not as they have included the copy of the DST and she scored 1 severe and 6 high.
Anyone feeling cynical and thinking they are just trying it on?

Luckily my MP has been in touch and wants to take on the CCG, so - do I get him and the media involved now or do I do the appeals process first?

Hi,

If this quote is exact, (no reason to doubt it).... "The result of the assessment/checklist is that you are not eligible because we did not find that you have a primary health need that would qualify you at this time.".......

Then I am appalled. Since when did a checklist prove a Primary Health Need or have a use in confirming CHC eligibility?

This foolish short-cutting that so many org's seem to do is indicative of their inability to understand let alone apply the rules.

 

[Farmergirl]

Hi Chris

Thanks for your comments. yes the quotes are exact and per letter. I think they are total numpties and have had previous problems with them - resulting in mum forking out to pay the care home £9K, when the CCG were ALSO paying at the same time. I asked for help- - they were pathetic. I had to engage a lawyer on mums money and didnt even get an apology.
Pathetic!
I will use whatever material I can get to haul them over the coals. I am happy to publicise and get coverage for what I think is a national scandal. Yes, Id like my inheritance but the bigger issue is that I am prepared to fight for those poor people who are frightened to. This is a scandal the UK wide!

Any ammo is welcome.

 

[retiredcopper]

Hi,

Our CSU on behalf of the CCG actually refuses in their standard letters, to automatically send copies of the Checklist or DST to patients or their representatives. That is against two or more mention of the need to automatically send the DST to patients and representatives.

We recently ran out of time to make a local appeal to the CSU... yes an appeal to a soon to be private company.... solely because they kept refusing to send the DST to the patient, because it was his daughter that kept asking for it to be sent... not to her but to the patient.

They insisted that; a brain injured man with double leg amputations and confusing infections and pain subdued by morphine as a result, that required further surgery to correct, who also had a UTI that further confused him and of course the inability to write due to arthritis: had to write to them explaining why he required his god given automatic right to the DST to be met.

They quoted chapter and verse that the data protection act meant that they did not need to comply with our wishes on his behalf. Yet if they actually knew what they were doing they would know that case law has long since altered that and that any close relative or friend can ask for information to be sent to someone (but not to themselves), on their behalf.

They even ignored the chapter of that ruling from the ICO website, for several weeks after I had sent it to them.

That's interesting to know Chris. Just in case, when I ring them, they say they haven't sent a copy to MIL, can you please tell me where to find the chapter on the ICO website with the ruling. As MIL isn't conscious she is unable to ask for anything let alone understand it so I just want to be armed in case I get the same response.

Angie

 

[Chris-G]

That's interesting to know Chris. Just in case, when I ring them, they say they haven't sent a copy to MIL, can you please tell me where to find the chapter on the ICO website with the ruling. As MIL isn't conscious she is unable to ask for anything let alone understand it so I just want to be armed in case I get the same response.

Angie

Hi Angie, Love the handle.....

Have a look at:-

http://www.themdu.com/guidance-and-...actice-for-responding-to-requests-for-records

I am struggling to find the ICO link (wish I had book marked it now).

Found it!

http://www.ico.org.uk/for_organisat...de/principle_6/access_to_personal_data#others

“If you think an individual may not understand what information would be disclosed to a third party who has made a subject access request on their behalf, you may send the response directly to the individual rather than to the third party.

The individual may then choose to share the information with the third party after having had a chance to review it.”

Of course: The National Framework says.....

"37.8 As the individual or their nominated representative should receive a copy of the DST it is important that it is legible, and free from jargon and abbreviations. "

"PG 42 How should decisions be communicated to the individual/representative?

42.1 Once the recommendation is confirmed by the CCG, the individual should be informed in writing [...]

In most circumstances a fully completed DST with a covering letter confirming the decision and giving the above details will be sufficient for this purpose. [...]"

Both of these rules are nothing to do with the Data Protection Act. However refusing to send the DST copies, then puts your request squarely in their minds at least, but falsely within that act.

All the best CG