Mum refused NHS continued healthcare at assessment - help please

[Cornishman]

Well done - very pleased for you.

You'll have to let me know your secret. You appear to have achieved more in a week than we have in over 2 years of fighting!

I'm off to look at Luke Clements' website!

 

[Farmergirl]

Cornishman,
If I can help, let me know. Im in wadebridge so imagine I cant be far from you.....

 

[Cornishman]

Cornishman,
If I can help, let me know. Im in wadebridge so imagine I cant be far from you.....

Thank you! I'll send you a PM tomorrow - it's a long story but I think we're playing things pretty much by the book which I'm hopeful will one day ensure we can demonstrate the injustice my mother has been subjected to.

It's nice to know there are some professionals with some humility out there though.

 

[Emma F]

I think at some stage a group of us need to come together to challenge legally how the Decision Support Tool is used. If I remember correctly, I read comments by Luke Clements somewhere that eh DST itself may not be legal.

Also, to score people higher with physical disabilities e.g. if you need to be fed through a tube, than those with mental difficulties, e.g. you need prompting to eat, differently would seem to me to be discrimination against those with mental incapacity and can't see how it can be legally acceptable to discriminate in this way. The end result of not being fed through a tube or not being prompted to eat for someone with severe Alzheimer's would be the same, so why does one get funding and the other not?

 

[Cornishman]

I read comments by Luke Clements somewhere that eh DST itself may not be legal.

My belief (which I'm happy to accept may be incorrect) is that the DST has no status in law, but neither is it "unlawful".

It's an internal NHS management tool. As with any organisation who develops a spreadsheet as a management aid, and that's all the DST is, they are quite at liberty to develop whatever methodology and supporting document they wish.

The are some CCGs who do nothing to dissuade people from thinking otherwise, especially the idea the document has some sort of non-negotiable primacy over everything and everybody else. It's just a way of marking someone against a template to determine whether, in the assessors' view, an individual has a primary health need or to identify another care need. The CHC/FNC framework document makes the point though that CHC/FNC eligibility shouldn't be determined by the DST alone, although in reality in my experience that's precisely, but wrongly, what the decision panel does.

It's what they do with the recommendation of the DST that might be unlawful, depending on the individual's care needs and other relevant factors, but that merits a thread of its own (and probably has!)

 

[Farmergirl]

Just to let you know Cornishman, I dont know your MP, but if he is the same as mine (Dan Rogerson) he is very concerned at the 'mistake' and how it could happen. I suggested that he look into similar incidents. It may be worth contacting him.
Good luck.

As a result of all the stress, I had a burst blood vessel in my eye yesterday. I look very pretty!

 

[Cornishman]

Just to let you know Cornishman, I dont know your MP, but if he is the same as mine (Dan Rogerson) he is very concerned at the 'mistake' and how it could happen. I suggested that he look into similar incidents. It may be worth contacting him.
Good luck.

As a result of all the stress, I had a burst blood vessel in my eye yesterday. I look very pretty!

Hi again - I've sent you a private message.

We've not approached either the MP where my mum resides in the CH, or my MP.

Unfortunately they're both "coalition", so possibly won't muster the same indignation over how my mother has been treated than those in opposition. I hope to be proved wrong on that thought if indeed that's a route we take.

Sorry to hear about your eye problem - at least the stress might be reducing now

(I once had low blood-pressure - the doctor wrote me a prescription for a Billy bookcase from IKEA!)

 

[Chris-G]

Hi again - I've sent you a private message.

We've not approached either the MP where my mum resides in the CH, or my MP.

Unfortunately they're both "coalition", so possibly won't muster the same indignation over how my mother has been treated than those in opposition. I hope to be proved wrong on that thought if indeed that's a route we take.

Sorry to hear about your eye problem - at least the stress might be reducing now

(I once had low blood-pressure - the doctor wrote me a prescription for a Billy bookcase from IKEA!)

Hi Cornishman,

the Coalition or old new? Labour........ It was Labour that brought in the 2007 and 2009 Frameworks. If a MP is interested then they will no doubt look into it fairly.

However, beware of trying to involve more than one MP in the matter, regardless that you have a problem in one constituency and your loved one is in another.

My mum's MP used a Parliamentary rule to refuse to act for her because I had made my own case (but not mum's), to my own MP. My issues although parallel are different to my mum's.

It sounds wrong but one Labour and One Conservative have both stated that as fact.

I have trouble with it because it seems impossible by that logic, to interest several MP's in an issue and so get something moving. It would also appear by that, to be able to contact a "campaigning" MP on the issue either.

As such how the hell do lobbyists get away with involving more than one MP in their issues?

 

[Cornishman]

Hi Cornishman,

the Coalition or old new? Labour........ It was Labour that brought in the 2007 and 2009 Frameworks. If a MP is interested then they will no doubt look into it fairly.

However, beware of trying to involve more than one MP in the matter, regardless that you have a problem in one constituency and your loved one is in another.

My mum's MP used a Parliamentary rule to refuse to act for her because I had made my own case (but not mum's), to my own MP. My issues although parallel are different to my mum's.

It sounds wrong but one Labour and One Conservative have both stated that as fact.

I have trouble with it because it seems impossible by that logic, to interest several MP's in an issue and so get something moving. It would also appear by that, to be able to contact a "campaigning" MP on the issue either.

As such how the hell do lobbyists get away with involving more than one MP in their issues?

Thanks for that Chris.

Getting an MP involved is in the "war chest" at present, and if (when) we need to go down that route, I have already decided to approach the MP for the constituency where my mum resides, rather than my own, because of the personalities and, in the case of my mother's MP, his medical background.

Best regards

 

[Wirralson]

Hi Cornishman,

the Coalition or old new? Labour........ It was Labour that brought in the 2007 and 2009 Frameworks. If a MP is interested then they will no doubt look into it fairly.

However, beware of trying to involve more than one MP in the matter, regardless that you have a problem in one constituency and your loved one is in another.

My mum's MP used a Parliamentary rule to refuse to act for her because I had made my own case (but not mum's), to my own MP. My issues although parallel are different to my mum's.

It sounds wrong but one Labour and One Conservative have both stated that as fact.

I have trouble with it because it seems impossible by that logic, to interest several MP's in an issue and so get something moving. It would also appear by that, to be able to contact a "campaigning" MP on the issue either.

As such how the hell do lobbyists get away with involving more than one MP in their issues?

Parliamentary rules are strict: only the MP in which the constituent resides can intervene in a constituency matter. Also the same case cannot be raised by two MPs. Ministers can (and do) refuse to answer in cases where this is breached - (I used to answer Ministerial correspondence as a Civil Servant). So Cornishman is correct to involve his mother's MP. Presumably your mum's MP felt that your correspondence regarding your mother's case was sufficiently similar to the case you had already raised to fall foul of the second rule above. And the purpose is exactly that: to prevent individuals mobilising multiple MPs in support of a purely constituency matter.

Lobbying rules differ, but to be involved the MP must have an interest either a declared one as a paid adviser or other interest declared on the Register of Members' Interests, or have a constituency interest. So (for example) an MP whose constituents worked in (say) a car factory in that constituency or even a neighbouring one could legitimately be involved in lobbying against closure of such a factory. Applying this to Alzheimer's Society issues, they could retain (paid or unpaid) multiple MPs to lobby for or advise on general issues affecting dementia or campaigns for funds, legal changes etc (e.g. the principles of CHC) but NOT on specific constituents' interests.

W

 

[Wirralson]

Thanks for that Chris.

Getting an MP involved is in the "war chest" at present, and if (when) we need to go down that route, I have already decided to approach the MP for the constituency where my mum resides, rather than my own, because of the personalities and, in the case of my mother's MP, his medical background.

Best regards

Which you are correct to do - your own MP cannot (or more accurately, should not) act in respect of your mother. Be aware, though that as CCGs are specific legal bodies the SofS for Health (or, more likely, Minister of State for Health responsible for dementia, Norman Lamb - https://www.gov.uk/government/people/norman-lamb) will likely say that it is a matter in which they cannot intervene as this is a matter for the courts. Ministers do not have the legal power in this instance to reverse a CCG's decision and award CHC. Nor can they direct a review - AIUI that is also outside their statutory powers.

On what you have posted, judicial review is your only practical remedy. However, there are strict time limits for this (roughly 6 months from the issue giving rise to the complaint arose, although when exactly this depends on a range of factors, including exhausting the local processes), and the approach you seem to have adopted looks to me as though it may mean that you risk losing this avenue. If you haven't exercised legal rights, Ministers are unlikely to provide much assistance.

W

 

[Cornishman]

Which you are correct to do - your own MP cannot (or more accurately, should not) act in respect of your mother. Be aware, though that as CCGs are specific legal bodies the SofS for Health (or, more likely, Minister of State for Health responsible for dementia, Norman Lamb - https://www.gov.uk/government/people/norman-lamb) will likely say that it is a matter in which they cannot intervene as this is a matter for the courts. Ministers do not have the legal power in this instance to reverse a CCG's decision and award CHC. Nor can they direct a review - AIUI that is also outside their statutory powers.

On what you have posted, judicial review is your only practical remedy. However, there are strict time limits for this (roughly 6 months from the issue giving rise to the complaint arose, although when exactly this depends on a range of factors, including exhausting the local processes), and the approach you seem to have adopted looks to me as though it may mean that you risk losing this avenue. If you haven't exercised legal rights, Ministers are unlikely to provide much assistance.

W

W

In which case I'd be interested in your thoughts of whether "local processes" includes the Health Ombudsman's complaint procedures and / or IRP? - because that's where we're at right now.

I don't want to miss an opportunity to engage lawyers if that's our only recourse to justice, having failed to convince the Ombudsman on the failure of process issue and the IRP of both that and the wildly inaccurate and outdated DST.

Many thanks.

 

[Wirralson]

W

In which case I'd be interested in your thoughts of whether "local processes" includes the Health Ombudsman's complaint procedures and / or IRP? - because that's where we're at right now.

I don't want to miss an opportunity to engage lawyers if that's our only recourse to justice, having failed to convince the Ombudsman on the failure of process issue and the IRP of both that and the wildly inaccurate and outdated DST.

Many thanks.

In general the term "local remedies" does not include PHSO/ombudsman. It usually does include IRP. The question is what is the formal appeal path. The PHSO isn't part of that and IRP is. Ombudsman cases can also require MP referral. PHSO is pretty irrelevant in the case you describe - worth a try, but little more. (Also I am not totally clear from what you have posted and emailed what your role was in the process, but some of what you describe suggest to me you may have actually undermined your chances of getting any case to the PHSO.)

Involving lawyers early normally gets results if only because they do this for a living and it automatically escalates the issue to the grown-ups. You need to get them engaged - at the moment you are dealing with people who think crayons are a food source. And I don't want to appear harsh, but this is a pretty basic question. If you're unclear on this point, you're going to expend time, money and effort chasing irrelevancies (as with the LGO).

You do need professional advice here, as you actually seem to have multiple complaints and some of these may be reviewable before IRP - but I have insufficient information to comment. A top-end specialist is around £200/hr + VAT - you're looking at around £1,200 plus VAT to get some action on this. Given the amount of money you have posted on here being expended in your mother's care, (and the fact that you could use her assets to fund the advice), am a little puzzled by why you have not asked for professional advice, but that's your call.

W

 

[Chris-G]

Wirralson,

Good info and I loved the confirmation of some of my observations.....

"at the moment you are dealing with people who think crayons are a food source".

There is one thing however, there is no actual need to involve your MP to place a complaint with the Health Service side of the dual role P&HS Ombudsman.

Out of context, have you or any one else, a translation of the following babble from within the National Framework?

"Deprivation of Liberty Safeguards

123. [...] The fact that a person who lacks capacity needs to be deprived of his or her liberty in these circumstances does not, in itself, preclude or require consideration of whether that person is eligible for NHS continuing healthcare."

Am I right in that this is stating that the CCG/MDT must both include or discount the presence and significance of any DOLS documentation during CHC assessments?

I take it to mean that the contents of a DOLS and not simply the fact of a DOLS' existence is important.
Yet at the last three CHC assessments I have attended, the MDT refused to acknowledge the information that is usually contrary to their record within the DST.

On the one hand the LA makes the DOLS sound bad so that they can justify it's continuing existence and then when operating as an MDT member, they try to ignore what was written by sometimes, themselves.

All the best CG.

 

[Wirralson]

Wirralson,

Good info and I loved the confirmation of some of my observations.....

"at the moment you are dealing with people who think crayons are a food source".

There is one thing however, there is no actual need to involve your MP to place a complaint with the Health Service side of the dual role P&HS Ombudsman.

Out of context, have you or any one else, a translation of the following babble from within the National Framework?

"Deprivation of Liberty Safeguards

123. [...] The fact that a person who lacks capacity needs to be deprived of his or her liberty in these circumstances does not, in itself, preclude or require consideration of whether that person is eligible for NHS continuing healthcare."

Am I right in that this is stating that the CCG/MDT must both include or discount the presence and significance of any DOLS documentation during CHC assessments?

I take it to mean that the contents of a DOLS and not simply the fact of a DOLS' existence is important.
Yet at the last three CHC assessments I have attended, the MDT refused to acknowledge the information that is usually contrary to their record within the DST.

On the one hand the LA makes the DOLS sound bad so that they can justify it's continuing existence and then when operating as an MDT member, they try to ignore what was written by sometimes, themselves.

All the best CG.

It means what it says, and not what you seem to have assumed. You say:

"I take it to mean that the contents of a DOLS and not simply the fact of a DOLS' existence is important.
"


Your assumption is incorrect. It says neither of those things.

What it says is:

1. The fact of the existence of DOLS doesn't rule out someone being eligible for NHS continuing healthcare.
2. The fact of the existence of DOLS doesn't make someone automatically eligible for NHS continuing healthcare.

That's all.

The contents of the DOLS won't necessarily be relevant, although the condition which gives rise to it and the way in which it manifests itself, its frequency and severity may be relevant. However that isn't in the wording of the passage you quote.

I am aware there is no need for MPs involvement health cases but there can be in maladministration cases, even where health is involved.

Hope this helps.

W

 

[Chris-G]

It means what it says, and not what you seem to have assumed. You say:

"I take it to mean that the contents of a DOLS and not simply the fact of a DOLS' existence is important.
"


Your assumption is incorrect. It says neither of those things.

What it says is:

1. The fact of the existence of DOLS doesn't rule out someone being eligible for NHS continuing healthcare.
2. The fact of the existence of DOLS doesn't make someone automatically eligible for NHS continuing healthcare.

That's all.

The contents of the DOLS won't necessarily be relevant, although the condition which gives rise to it and the way in which it manifests itself, its frequency and severity may be relevant. However that isn't in the wording of the passage you quote.

I am aware there is no need for MPs involvement health cases but there can be in maladministration cases, even where health is involved.

Hope this helps.

W

It is just a pity that it simply does not state that as the evidence within the DOLS report is it is routinely ignored because the crayon munchers do not understand the word "preclude".

Although, the MDT/Panel are supposed to include any and all available reports during an assessment. (Or words to that effect).

All the best CG.

 

[Wirralson]

It is just a pity that it simply does not state that as the evidence within the DOLS report is it is routinely ignored because the crayon munchers do not understand the word "preclude".

Although, the MDT/Panel are supposed to include any and all available reports during an assessment. (Or words to that effect).

All the best CG.

A DOLS assessment isn't a report. It's a procedure for confirming that appropriate procedural safeguards have been applied in the case of someone being deprived of their liberty (effectively prevented from leaving a nursing home or hospital). I can't see the relevance of much of the DOLS paperwork to most CHC cases, although the condition giving rise to it could be very relevant.

W

 

[Chris-G]

A DOLS assessment isn't a report. It's a procedure for confirming that appropriate procedural safeguards have been applied in the case of someone being deprived of their liberty (effectively prevented from leaving a nursing home or hospital). I can't see the relevance of much of the DOLS paperwork to most CHC cases, although the condition giving rise to it could be very relevant.

W

I actually have the latest DOLS report made by the LA, with all of the descriptions of the needs that engender the requirement for the DOLS.

I am also aware that a Consultant Old Age Mental Health specialist visited mum the other day and made an assessment and I don't yet know why. Nor does the NH.
I assume (until I get his report), that he is looking into the latest CHC appeal or even the DOLS issue.
Mum has a different OAMH Consultant and I was assured that he still is her Consultant.

For example: Direct quotes from the DOLS report:-

"Mrs XXXX is resistive to personal care and staff often have to undertake this against her will, with one member of staff holding onto her arms and hands, whilst another member of staff carries out the personal care."

Obversely, the last DST minimised this behaviour and therefore hid the needs from the panel and any subsequent appeal panel. Not to mention that the DST is required to be used in formulating a patient's care plan.

Here's another quote:-

"Sometimes a third member of staff is needed to walk behind her and hold her if she starts to fall." {Whilst already having two staff escort her}.

When compared to the falls risk assessment in the DST mobility domain, which was minimal (because she seldom falls), the report is a direct contradiction of the DST evidence.
It in any case, proves a well met need because she will fall but staff prevent it by intense activity and the need for continuity in dealing with the needs of a highly mobile resident who scores "severe" in the cognition domain.

(Continuity of care needs is the hidden 5th criterion by the way. It is in the framework but avoided by MDT's because it is not directly described as one of the criteria).

As for the predictability of her needs: (so that a third staff member is present when she is led away from danger or to the loo etc.):
An IRP (a while back), took great exception to any reference to her condition being predictably unpredictable. And partially from such they recommended in her favour.

Then after listing numerous reasons to confirm the need for the DOLS the LA assessor wound it up with:-

"These restrictions, the constant supervision and control and the fact that Mrs XXXX is not free to leave the nursing home, amounts to a deprivation of liberty."

There are 12 paragraphs of comments that in comparison with the DST, accurately if only generally, record her needs so that DOLS can continue to be justified.

We also have what our LA calls a CAP2 report. It lists the resident's needs briefly and independently from the DST and because the LA MDT member is for whatever reason generally in agreement with the NHS members, I contend that it was written afterwards so that it matches the MDT recommendation or even written after the panel decision and after sight of their written deliberations. (Last part is only conjecture but it is based upon years of experience of such behaviour).

The CAP2 report that I hold, really only differs from the DOLS report in it's accuracy of content. The format is very similar.

Remember, they are written by the same organisation but for opposing reasons, (one to prove the need is high and the other to prove the need is low) and you get your reason as to why they differ so much.

I hope that clears it up a bit.

All the best CG.

 

[Wirralson]

I actually have the latest DOLS report made by the LA, with all of the descriptions of the needs that engender the requirement for the DOLS.

I am also aware that a Consultant Old Age Mental Health specialist visited mum the other day and made an assessment and I don't yet know why. Nor does the NH.
I assume (until I get his report), that he is looking into the latest CHC appeal or even the DOLS issue.
Mum has a different OAMH Consultant and I was assured that he still is her Consultant.

For example: Direct quotes from the DOLS report:-

"Mrs XXXX is resistive to personal care and staff often have to undertake this against her will, with one member of staff holding onto her arms and hands, whilst another member of staff carries out the personal care."

Obversely, the last DST minimised this behaviour and therefore hid the needs from the panel and any subsequent appeal panel. Not to mention that the DST is required to be used in formulating a patient's care plan.

Here's another quote:-

"Sometimes a third member of staff is needed to walk behind her and hold her if she starts to fall." {Whilst already having two staff escort her}.

When compared to the falls risk assessment in the DST mobility domain, which was minimal (because she seldom falls), the report is a direct contradiction of the DST evidence.
It in any case, proves a well met need because she will fall but staff prevent it by intense activity and the need for continuity in dealing with the needs of a highly mobile resident who scores "severe" in the cognition domain.

(Continuity of care needs is the hidden 5th criterion by the way. It is in the framework but avoided by MDT's because it is not directly described as one of the criteria).

As for the predictability of her needs: (so that a third staff member is present when she is led away from danger or to the loo etc.):
An IRP (a while back), took great exception to any reference to her condition being predictably unpredictable. And partially from such they recommended in her favour.

Then after listing numerous reasons to confirm the need for the DOLS the LA assessor wound it up with:-

"These restrictions, the constant supervision and control and the fact that Mrs XXXX is not free to leave the nursing home, amounts to a deprivation of liberty."

There are 12 paragraphs of comments that in comparison with the DST, accurately if only generally, record her needs so that DOLS can continue to be justified.

We also have what our LA calls a CAP2 report. It lists the resident's needs briefly and independently from the DST and because the LA MDT member is for whatever reason generally in agreement with the NHS members, I contend that it was written afterwards so that it matches the MDT recommendation or even written after the panel decision and after sight of their written deliberations. (Last part is only conjecture but it is based upon years of experience of such behaviour).

The CAP2 report that I hold, really only differs from the DOLS report in it's accuracy of content. The format is very similar.

Remember, they are written by the same organisation but for opposing reasons, (one to prove the need is high and the other to prove the need is low) and you get your reason as to why they differ so much.

I hope that clears it up a bit.

All the best CG.

A DOLS is still NOT as you allege, a report. It is a purely procedural requirement. A DOLS is written to prove not that the "need" is high but that the person cannot be allowed to leave the facility where they are resident. They can be and are challenged, and there is much pressure to complete them properly, hence the (probably over detailed for the purpose) example you quote.

As an example, my mother was deprived of liberty most of her time in care and DOLS forms were completed periodically. The emphasised the risk her behaviour posed to her safety (and that of others). But the detail provided, when translated into a DST and CHC National Framework Assessment format (as part of the review of her s117 funding - she wasn't on CHC but the framework used was similar) - meant that she actually scored pretty low.

As an aside, none of what you've described makes me think that the evidence of the very complete DOLS assessment actually differs in any material degree from the evidence you have described being used to assess your mother. They may seem very different to you, but probably differ little in practice. Also what you've described in the DOLS doesn't make me think that the score your mother will get is necessarily sufficient to qualify for CHC, (although what you've posted elsewhere suggests she might.)

PS I was wondering if you are an ex-police officer or Inland Revenue or Customs? Your style reminds me of individuals I've worked with from the police, revenue and customs - that's meant to be a compliment btw!

 

[Wirralson]

My belief (which I'm happy to accept may be incorrect) is that the DST has no status in law, but neither is it "unlawful".

It's an internal NHS management tool. As with any organisation who develops a spreadsheet as a management aid, and that's all the DST is, they are quite at liberty to develop whatever methodology and supporting document they wish.

C

Not so, although true at the time your case started. The National Framework and with it the DST have some legal status. SI 2012 No 2996 ("The National Health Service Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) Regulations 2012") requires that bodies (CCGs) carrying our their duties are required to "have regard to the National Framework". Link below

http://www.nhs.uk/choiceintheNHS/Ri...Documents/nhs-england-and-ccg-regulations.pdf


The relevant bit is Regulation 21 at paragraph (12). This may help you as your CCG has failed to do so since 1 April 2013 (when the regulations came in to force - no joke) your CCG may be in breach of statutory duty, which may assist any application for Judicial Review.

W