NHS Continuing Healthcare maladministration – where does the buck stop?

Hi Meggie - Many thanks for your post and we understand the frustration. Why not consider instructing a professional organisation to assist you with this. It can really take the stain out of the situation. See www.farleydwek.com They do provide some initial free advice and can offer no win no fee in appropriate circumstances. Kind regards

You should have a choice of care homes, Lynda. Presumably, the others cost more than the local authority is willing to pay. Keep in mind that you cannot be forced to pay top-up fees. This information from Independent Age explains more about that: http://caretobedifferent.co.uk/care-home-top-up-fees/

We hear many reports from families who have had similar experiences to you, Lynda, e.g. not being informed or involved in the Checklist, questionable dates of assessments, a few handwritten notes, scant (if any) attention to the question of consent, etc. Time constraints (no doubt caused by the incompetence of those involved) are no excuse for them excluding you from the process. No one should ask you or your partner to pay anything in care fees until the CHC process has been properly carried out.

Many people complain about the NHS complaints process, Richard, and it can be a hugely frustrating experience - to say the very least. You could approach NHS England and ask for an Independent Review Panel hearing, if you haven't done so already.

SD if the council recommended the move to nursing home and CHC was already being paid at the patients home then I would argue that the needs must still be beyond the councils remitnto provide for. The needs have got worse not better. Don't let the NHS try to remove the funding. It must still be valid.

Thanks for your kind words about the website, sd. Well done for standing your ground.

Hi sd - the CPN is talking nonsense. Continuing Healthcare (CHC) funding is not dependent on where a person physically lives (i.e. in a care home, at home or elsewhere), nor is it dependent on the qualifications of the person delivering the care. It depends only on care needs, not on how well they can be managed. See the National Framework page 21, paragraph 56 and 58: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/213137/National-Framework-for-NHS-CHC-NHS-FNC-Nov-2012.pdf Once CHC is awarded, it is reviewed initially after three months and then annually.

Thanks for your kind feedback, KD.

KD,
There is no second checklist requirement if funding already exists. However it does seem strange that hospitals do not necessarily know that, when discharging patients. So perhaps them not automatically doing one is a blessing of some sort.
As Angela wrote, the annual review is a full chc assessment just like last time. But watch out for poor nursing home record keeping and money saving assessors. Also, the MDT members will not necessarily be your friends even if they try to appear to be.
I would also take the last DST copy with you and try to ensure that all of the information on that ends up on the new version. That way they will have a hard time if it comes to an appeal.

The funding cannot simply be removed without proper review. If the funding is removed in this way, the assessors (or whoever removes the funding) are effectively saying that your father's care needs have fallen below the threshold for NHS care and that they are now 'just' social care needs. If your father's needs have not decreased in such a way, this would put the local authority in an illegal position - because they would be taking responsibility for care that was beyond their legal remit. So there must be a proper review of each domain, to ascertain whether or not your father is still eligible, and this must be done before funding is removed.

Whenever did anyone in power do anything to rock what is already likely to be a foundering boat?

That's a good point, Andrew.

Hi Andrew, Late reply. Soz.
Relates to the Drugs domain and the word 'relapse' If the drug is refused, late or withdrawn...... RELAPSE........ How can the need be permanently reduced? It is simply 'well managed'

Andrew. The term they use is disguising "a well met need". If the drug is not administered then the need is no longer met. The drug is meeting a need and even if unpredictability is lower; the Nature and Complexity and the need for Continuity of Care, (a hidden criterion), still exists.

Hi Andrew - sorry for the late reply. I agree - the phrase "permanently reduced" is nonsense. If something is reducing, but has not disappeared, then it could surely come back without close care. Regarding assessment scores, the reports we receive from families indicate that there is certainly inequality in the way assessors across the country make their recommendations. However, I do know of cases where relatively low scores have succeeded.

The assessors also do not understand that the clauses within the severe section and others too...... Have the word 'OR' but they insist that all of the circumstances described within each of the domain descriptors must apply.
That is of course untrue. Try writing the Severe section/score like this:-

'Requires administration and monitoring of medication regime by a registered nurse, carer or care worker specifically trained for this task because there are risks associated with the potential fluctuation of the medical condition or mental state,' [........ THIS NEXT OMITTED BIT CAN BE IGNORED TOO........]
'OR
Risk of non-concordance with medication, placing them at risk of relapse.'

We know what risk means. However:-
Page 53 of the DST reads:
'Concordance
An agreement between a patient and a health professional regarding the provision of care. Concordance and compliance are frequently used interchangeably.'
Can a patient with severe cognition agree with anything, let alone give permission to carry out any level of care at all?

This example would be best applied if the patient had 'severe' cognition levels recorded and was prescribed drugs other than simple or complex painkillers. And that they were administered covertly. (Indicates non concordance). Relapse into pain is difficult to prove and easy to correct. Yet missing out meds for psychosis or cancer treatment or epilepsy etc. will doubtless have unintended consequences that cannot be quickly corrected or planned for either. Either way, without cognition one cannot give or display genuine concordance. Accepting something when non cognizant is not displaying concordance either.

Assessors often make the 'mistake' of looking at managed needs, instead of the underlying needs.

In response Andrew, to something you posted above. It was in regard to carrying out another assessment instead of going with the assessor's affirmative result.
An IRP that I attended in 2012 stated that carrying out a second assessment (even though it was local policy), was not part of the National Framework rules. It short cut the appeals process and was implied by the Panel Chair, to be cheating. It was also observed that the original assessment result was being ignored because the appeal had been bypassed without addressing the appealed matters. There again they stated that it was an unnecessary intrusion when they already had a clear assessment that they were not permitted to argue against without expressing exceptional circumstances. No such circumstances ever being expressed.

Andrew, I have posted before. If one looks at each clause of the severe level within the drugs domain, each part is a stand alone clause. It says OR.
Therefore if one has cognition and pain that is treated with general simple relief, one could be said to score high. If one can refuse pain relief and then ask for it later then one is doing it to oneself. It is not refusing concordance or being unable to be concordant or risking relapse if one is refusing painkillers and then asking for them later.
If another receives meds that require advance consent from the patient (concordance is described at the back of the DST), and the other cannot give it and that those drugs if withdrawn or refused, would lead to a relapse of perhaps psychosis or Parkinson's symptoms, or Epilepsy etc. etc. (might also include pain with lack of cognition/communication), then the level is described within the last clause of the Severe section. I would argue that covert meds or those given to an unconscious patient in their best interest, are not being given with their concordance.
I would also argue that if such meds are seen to be so important that they would also cause a relapse if withdrawn. Ergo they comply with the wording of the Severe level in the DST. The NHS will of course deny this because when it suits them OR is also AND.

The whole process should be open and transparent, and the candidate's representative should be kept informed and involved at all times. We often hear from families that assessors have carried out 'assessments' or visits behind the representative's back, and this is something you can of course use to support any appeal.

Hi Andrew,
We have argued this for ages. It's a bit like having a three month long driving test. (without them telling you). If that happened then very few of us would hold a license. There would be such an outcry.
The Council send people to snoop. The NHS do it too. I have posted on this site that I have caught people randomly doing just this and when challenged they insist that they have a legal right to keep doing it. They turn up unannounced at a sick person's room and without telling them who they are, they interrogate them. (My father in law mentioned this and we initially assumed that it was new nursing home staff or his GPs). The classic response of an unsuspecting and uncomplaining bed ridden patient is of course, "I'm fine, thank you". Then, (in their minds. "I don't want to cause any trouble"), they minimise their own illnesses and their needs......... Job done and all without anyone from the home or the family to disagree or contradict the patient who often does not understand their needs, illnesses or the NHS CHC process at all.
I consider that it is unlawful intelligence gathering and there is no paperwork generated that I have been able to access.
The intelligence is used to assess when the best time in some patient's cycles is likely to produce the best result for the NHS.
Once they retract funding you'll never see them doing it ever again.
The National Framework concept of "more frequent assessments" for "some patients", only works one way, apparently.
At the June 2015 Independent Review Panel (IRP) for my mother, the NHS stated, on record, that once funding is withdrawn then it would be a waste of their and council resources to continue "visiting". So there you have it: On the one hand, they waste resources (cheat) with the foreknowledge that so doing will save their employers a lot of cash. On the other they discard the patient because the council care provided to them, alters their status and the person is no longer a NHS patient. Now that is strange considering that in most cases the much cheaper Nursing Care Contributions are paid out by the NHS.
In short: Clever people are employed at Directorial level by the NHS and their Commissioning Support Units (CSUs). If you were one of their underlings with a mortgage and car payments, would you simply do as they tell you? Many people would. Over time those are the very people, (and eventually only those sort of people), that are still employed within this process.

I suspect you're right, Andrew, that the CCG is trying to avoid acknowledging a positive funding recommendation. Reassessment should not be necessary.

Andrew they did this to my mum in 2011. The assessment should have showed two severe's they downgraded it we kicked off. They decided to reassess. The much later IRP decided that the second assessment as a solution was unfair because it did not address the grounds for the appeal against the original attempt to downgrade the domain levels. You must remember that the CCG (or more likely it's CSU) can only "verify" the work of the MDT. They cannot alter the DST. They cannot argue against the recommendation of the MDT unless they express exceptional circumstances. I would assume that the refusal letter did not contain any exceptional circumstances. Therefore there were none. The NHS likely, simply downgraded the levels to save cash.

Severe states: 'Challenging behaviour of severity and/or frequency that poses a significant risk to self, others or property. The risk assessment identifies that the behaviour(s) require(s) a prompt and skilled response that might be outside the range of planned interventions.'
High states: 'Challenging’ behaviour that poses a predictable risk to self, others or property. The risk assessment indicates that planned interventions are effective in minimising but not always eliminating risks. Compliance is variable but usually responsive to planned interventions.'

One requires interventions to be effective; the Severe score implies that those interventions are not effective.

The High seems to require that there is some conformance with instructions. I would suggest that a Severe score in the Cognition doamain indicates the Severe Behaviour domain, if Behaviour cannot be enhanced by the patient displaying compliance.

Take the phrases apart and look at what each little section means and then apply it to the minutiae of the patient's behaviour.
Good luck with your appeal.

Thanks very much Chris.

Incredible! So basically the NHS can do whatever they wish in order to get the result that they want!

What can one do if you discover the care home that one's loved one is in is basically writing care notes that are unfit for purpose?

We remember that the MDT co-ordinator commented specifically during the assessment that the care home's record keeping was not as detailed as it should be.

Thanks so much, Wendy.

Sue, Have a look at Jim's reply well above your update. It might give you an idea of what nonsense you have been told. It might give you another avenue of attack, assuming you have the energy of course. Good luck.

David,
It was done to my mum in 2011 when the social worker and the NHS nurse could not agree. They asked for 24 hour monitoring for a week after the assessment. In the circumstances it seems acceptable. I think that such practice is justified somewhere in the 2012 updated National Framework.

Although, if the evidence (you can ask for it at the nursing home), is very different to what the nursing home had recorded in the three months or so before the assessment then I would be wondering why that had happened.

If you visit every day as my dad does then much of what is missed in the official record can actually be argued. Then again the CQC recently booted the manager out because of their inability to keep records. e.g. she would report incidents and injuries involving aggression, in only one patients file.

At an IRP in June this year, the chair took copies of my fathers diaries and then held another private panel to read and insert them into the 7 hour long record before making her decision. She had the NHS read the files at the meeting we attended and then gave them the chance to just pack it in and pay up. They declined and took their chances and still lost.

Hello Carol, The answer to your question as above. An enema is not the same as a manual evacuation. You may find the following www.wirral.nhs.uk/...and_Proceedures_Nursing/NPC05Procedure for B...of interest as it gives clear definitions of bowel procedures such as enemas, manual evacuation and suppositories. It also describes nurse interventions, side effects, and complication, for example, danger of possible bowel perforation/laceration, and gives an account regarding Autonomic Dysreflexia which can be a fatal condition suffered by those with spinal injury. You will also find information with regard to Pressure Area Care and avoidance of complications that can and occur. Also describes Grading of Pressure Sores. You will find the information at www.wirral.nhs.uk/document_uploads/policies_Nursing/ Procedure. If I can be of any further assistance, I will try my best to help you. It is very important that you take care of yourself, though I appreciate how stressed and frustrated you must feel going through the shocking ordeal that is the NHSCC process. I hope the above is of support to you. Regards Wendy

The statement from the social services rep is so typical! If care needs are beyond the LA remit, there should be no self-funding and full NHS funding. It's maddening, isn't it?

Thanks for your comment, Miriam. Many families will certainly be able to empathise with your experience. Well done for persevering.

Hi Miriam, You've "been labeled as difficult": believe it or not, there is actually a power available to public bodies to ignore what they assess to be "Vexatious and Persistent complainants.
Here's an example of the NHS' version that states "Persistent complainants can take up a significant amount of NHS resources to deal with and can be stressful and demoralising for staff. " Shame. They get paid to spend the NHS's time and resources and with regard to our overall costs, we don't.
https://www.ntw.nhs.uk/fileUploads/1441811293CCC-PGN-02%20-%20Vexatious%20Complainant-V01-Iss2-IssuedJune15.pdf
It has been used against me even with the threat of a visit from the NHS's security team. (never for swearing or abuse; but for getting too close to the truth or threatening to complain). Whenever they impose it I notify everyone involved that I will not respond to invoices, correspondence etc. on the grounds that I have been told that my correspondence/calls are to be ignored. Catch 22 sometimes works the other way too.

Usually it's the verbal questions that are asked that give it away. Almost always, a person needing care will first be asked about their money. Reports from families also indicate that financial questions are sometimes asked in Continuing Healthcare assessment meetings. In as assessment meeting I sat through myself, the very first question asked was whether the person being assessed would be self-funding. This indicated either an astonishing lack of knowledge and training on the part of the person who asked, or a deliberate attempt to ascertain whether assets were available.

Hi David, Probably very difficult to do this unless you had financial assessments (means tests) done by the council prior to a first CHC assessment. I am with our council, arguing that data collected after a refusal to continue to fund was processed unlawfully because having won appeals that took two years, the care charges levied by the council never were valid and so the financial data collection and processing was unlawful too.
So far the council Data Protection Officer has had to keep referring the matter to a Ltd company that acts for the council in all of it's financial matters. I would argue that they are behaving unlawfully on that ground alone. The Ltd company does not want to know. They consider themselves above all of the rules and law that the council has to operate under.

I will be passing the matter to the Information Commissioners in the near future so that they can investigate.

Hi David, The Framework requires the DST and the reasoning for the decision to be sent "as a minimum". Yet our local CSU (the CCG's henchmen), refuses to do that on the stated grounds that they do it under signed for postage and many recipients are not at home to sign for it. They could of course simply send the DST etc. to the person in the nursing home where I am sure someone would be around to sign for it. I have reported here that I have received DST copies on memory stick that have been altered even after the date of the Eligibility Panel. I have also received forged DST's that claimed to be the original that denied funding when I already held a social worker's copy of the hand written original that recommend funding. The Framework denies anyone the right to alter a DST but sometimes they do it anyway.

It certainly does sound as though they are making things up as they go to suit themselves. Definitely complain in writing - frequently and vociferously.

David - there should be a social care report done as part of the CHC process. It's not you that has to do that, but the local authority (LA) team/social services. If you have not seen any such report, be sure to contact the LA, as it's a vital part of the process. This article may also help: http://caretobedifferent.co.uk/nhs-continuing-healthcare-assessments-2/ and also this one: http://caretobedifferent.co.uk/care-act-2014-helps-you-with-nhs-continuing-healthcare/

You're correct, Karin. This is a current assessment and not a retrospective one. The payment should be forthcoming - and from the original Checklist, as you say.

Karin, He should be eligible usually, from the date of his NHS CHC assessment. If it was very delayed after the checklist in 2014 then I would argue for a date nearer to that checklist on the grounds that you or he did not cause the delay. You appear to have done that on the phone. Perhaps you need to put it in writing too.

If he was released from a hospital without an immediate checklist or a CHC assessment then I might argue that he had continuing care needs that were clearly in existence and then confirmed in the checklist of 2014 and then the chc assessment. I might argue from closer to the date of the discharge, in that case.

I would do the same if a doctor had advised a move to an actual nursing home, on medical grounds. Especially if there was any significant delay in carrying out a checklist or chc assessment.

I don't doubt that you have been self paying or that the council has carried out a financial assessment and you are contributing by paying them. If so, how can that be correct when the NHS has accepted that the care needs are theirs to provide for and that the care is beyond the council's legal remit to provide?

If you have not done so I would suggest (and this is my tactic and my opinion so it is up to you), enquire about stopping payments and write to the home or the council with a copy of the letter from the NHS admitting that the costs are theirs.
It is disgusting to have been delayed so long by these people.
I hate to state it but you are likely due a mandatory 12 months review too. So you will get to do it all over again. Please don't let that thought get you down. Information should never be a burden.
All the best. CG

David your last question is a good one. So far our social services have been useless due to not even having an agreed dispute resolution procedure that the framework requires. Then they lie by claiming to use versions (that do not exist) in the interim.

The latest debacle is the senior data protection officer cannot gain access to all of the data collected from us because it has been sent to private companies that work for the council. Those companies do not want to play ball at all. Once again it would require a complex investigation from the Information Commissioners Office or the police as it is an offence to process data in some circumstances, let alone fail to lose it or lose access to it.

HI David - the whole process is supposed to be completed within 28 days. However, in my experience this rarely happens and families are left chasing and chasing the NHS for a decision. Sadly, it is also not unusual for emails, phone calls and correspondence to be ignored. It can be infuriating. Unless the assessors have stated that they need to gather further evidence, there's really no reason why they can't send their recommendation to the CCG straight away, save for the time it might take to type up all the notes. Many people would echo your thoughts about the way people operate in this process and the comparison with the private sector. Don't let the delays by the NHS force you into paying for care before a proper decision has been made.

Thanks for your very kind feedback, David. Regarding the positive recommendation from the MDT, the CCG should only reject that in exceptional circumstances. This may help - and although the article is about retrospective claims, the points are just as valid here: http://caretobedifferent.co.uk/retrospective-claim-for-care-fees-rejected/ The delays in assessments are completely unacceptable, and you're not alone in raising this as an issue. It seems that annual reviews take place fairly promptly when it's in the interests of the NHS to see if funding can be removed, but for people who have not yet been assessed, the lengths of time some people have to wait are an absolute scandal. Yes, I would certainly argue that this is maladministration - and people are also often wrongly forced to start paying care fees in the interim before any reliable decision has been reached about who is actually responsible for paying for care. This potentially puts local authorities in an illegal position, by effectively accepting responsibility for care that is beyond their legal remit (even if a person is self funding). There is still scope to reclaim care fees wrongly paid, although this is more limited now. However, if the reason those fees were paid is because the NHS failed to abide by its responsibilities to assess in a timely manner, there may be a legal argument to reclaim further fees. I have heard of instances where a CHC team will seem to 'weigh up' the likely repayment due against the decision of an award of current funding, but this kind of behaviour is completely unacceptable.

Like you wrote David,
the press does not seem to know much about this. I am afraid that it is so complicated that the press cannot unravel it and then write a quick story that would be easily understood or perhaps even believed.

No one is even interested that for around two years, Commissioning Support Units (soon to be privatised), the subcontractors to the CCGs, were making CHC eligibility decisions when the law denied them the right to do so...... The decisions were the sole legal duty of the various CCGs. Ignoring a Legal Duty is likely maladministration at the very least.
e.g. Would it be acceptable if your Bank's accounting and billing was done by a subcontractor? Perhaps by the toilet cleaners, buildings managers and photocopier services providers?

If what I know is true (if not then why has our local CCG/CSU finally altered the way it does it), then I estimate that perhaps 18 billion pounds worth of eligibility decisions in England have been made by the wrong organisations....... This is with the full knowledge of NHS England and the Secretary of State too.

Hi Carol,

It is the examination of all of a person's needs and then a comparison of them against the eligibility criteria to discover if any or all of the needs are complex, intense, unpredictable. There is also a barely mentioned (in the Framework) consideration required if the total needs indicate that continuity of care is required.

For example: Incontinence has social care and medical care components, such as: How long does it take to deal with? How many staff? Does it affect others? Is clothing removed by the patient? (Disinhibition behaviour). That one needs to consider the clean up not just of the patient but of the environment as well. How long does that all take? Where does it take place? Is it in a dangerous place? Do staff actually prevent it at times? How often does it happen? Does the clean up significantly delay other services to the patient or others? Does the patient actually wear incontinence pads? Do they refuse pads? What problems does that cause?

Much of the other issues in the DST can be approached in a similar 'nit picking' kind of a way.
If the CHC assessors try to minimise matters at assessments by insisting that they are purely 'social needs' then they are not assessing properly. The legal test of the council's remit to provide care is about all of the needs combined.

This may help: http://caretobedifferent.co.uk/care-act-2014-helps-you-with-nhs-continuing-healthcare/

It sounds like there has been a lot of impropriety in how the assessment process has been conducted, Carol - not to mention how unprofessional the assessors have been. I think you're right to be suspicious about what they are telling you. Regarding the social worker/local authority representative, these two articles may help: http://caretobedifferent.co.uk/care-act-2014-helps-you-with-nhs-continuing-healthcare/ and also http://caretobedifferent.co.uk/nhs-continuing-healthcare-assessments-2/ It's not unusual for assessors to suggest you don't take things further because there's little chance of succeeding. In my experience it may be a way to put you off and make you go away. If a person is not eligible for CHC, they should immediately be considered for Funded Nursing Care (FNC), which is the weekly payment - currently £112/wk - rather than being offered some arbitrary percentage that seems to have no basis. That indicates the assessors either don't know what they're doing, or they're trying to get you to accept less than your friend might be entitled to. You can still continue to appeal if you receive FNC. Before you accept anything, though, including any percentage, I would insist on the NHS providing written reasoning for the percentage. Also, make sure you state clearly in writing that any payment made that is less than full CHC funding does not indicate your acceptance of the funding decision and that you will continue to appeal. But first I would question on what formal basis they are offering 10%. It doesn't sound right at all to me.

Hi Barry. Here is Annex F of a publicly available report by ADASS. The association of directors of adult care and social services. It was written in 2007. It has never been rescinded. (Or so they told me). It also exists in newer forms within their literature. The document stems from their interpretation of the case law created in 1999:-

F1. Pamela Coughlan – Pen Picture of Clinical, Nursing and Care needs
F1.1 Pamela Coughlan was injured in a road traffic accident in 1971 and as result became tetraplegic (spinal injury) and wheelchair dependent. She retained some (very limited) use of her hands with which she could manoeuvre her electric wheelchair and write (with a pen strapped to her hand). She remained completely mentally aware, could access the Internet, converse freely and represent her views articulately. She had no cognitive impairment or behaviour that could be described as challenging.
F1.2 Pamela Coughlan was paralysed in the lower part of her body, with no movement in her legs, and limited movement in her upper torso. She required hoisting for all transfers however once transferred into a wheelchair she has a reasonable amount of independence. She required repositioning approximately 8 times per day to maintain skin integrity. She did not require a regular programme of active or passive physiotherapy or exercise, although being assisted to stand twice per week assisted with maintaining appropriate organ positions and strengthening her bones.
F1.3 She wore a corset during the daytime to keep her chest upright without which she would have had breathing difficulties. There were no night care issues regarding her breathing.
F1.4 She was doubly incontinent; needing intermittent catheterisation, every 3 hours as this proved the most effective way of keeping dry. She required manual evacuation of her bowels every second night.
F1.5 Because of her injury she was unable to maintain her core body temperature, which was unstable and variable, and consequentially, because of excessive perspiration, she required changes of clothes and the corset up to three times a day. Pamela was able to tell when she was too hot or too cold and therefore proactive monitoring was not required regarding this aspect of her care.
F1.6 Pamela Coughlan was dependent on others for all aspects of her personal care and daily living activities. She could eat independently using a spoon
ADASS/LGA Advice on Continuing Care October 2007
23
strapped to her hand provided that the food is cut up for her. Someone needed to hold a cup whilst she was drinking as her hand would spasm if she touched a hot cup.
F1.7 Clinically and from a nursing perspective she was stable with predictable needs some of which presented with medium risks e.g. regarding fainting if air flow was inhibited (managed by corset), spasm provoked by heat (e.g. hot cup), autonomic dysreflexia (very high blood pressure) as a result of pain or injury below the spinal injury site (T5/T6).
F1.8 All of her medication was routinely prescribed and administered by mouth; Senokot, Docusate, Calcium, Iron. Once her condition stabilised she did not require an allocated consultant nor require any interventions from ‘specialist’ healthcare professionals.
The court found that Pamela Coughlan’s needs “were primarily health needs for which the Health Authority is, as a matter of law, responsible”.
F1.9 Pamela Coughlan’s healthcare needs and her need for registered nurse care were neither complex nor unpredictable. However the court took the view that a) the quality and quantity (nature and intensity) of her health needs and interventions were such that she had predominantly healthcare needs and b) her need for registered or unregistered nurse care was more than incidental or ancillary to her accommodation needs and was not of a nature that a Local Authority could reasonably provide (i.e. they were not social care needs).

Copy and paste it and then look for and list the corresponding ailments of your loved one.

I did such at a June 2015 Independent Review Panel. They did not even try to argue it in support of the NHS managers that were present.

All the best.

I think many families would echo your comments, Barry.

Those paragraphs highlight that there is a limit for local authority care. The new Care Act can help with CHC - this article may be useful: http://caretobedifferent.co.uk/care-act-2014-helps-you-with-nhs-continuing-healthcare/

Hi Barry - National Framework page 50, paragraphs 2.1 to 2.3 describes the difference between a health need and a social care need, and you may find that helpful. https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/213137/National-Framework-for-NHS-CHC-NHS-FNC-Nov-2012.pdf The legal limit was also reinforced in the Coughlan case, as mentioned before.

Hi Barry - no, the Coughlan and Grogan cases, and all the other previous cases, are still just as relevant today as they were at the time they were fought. The local authority legal limit is key - and this legal limit (reinforced in the Coughlan case) should be the primary factor in any CHC eligibility decision. The Decision Support Tool is just that - a support. This may help: http://caretobedifferent.co.uk/nhs-continuing-healthcare-assessments-2/

Hi Paul - thanks for your comment, and I'm glad you're finding the book useful. That's always good to know. In the CHC assessment process, the only forms that should be used are the Checklist, the Decision Support Tool (DST) and the Fast Track. I know that some hospitals, certainly in London at least, also use a form called an HNA - Health Needs Analysis or Health Needs Assessment - but this does not negate the need for the Checklist, DST and Fast Track forms. The National Framework guidelines make it clear that these are the only forms that count. If you (or your mother) are acting on behalf of your father, you should receive a copy of every assessment form, and be involved in it's completion - and have the opportunity to see it and object to any omissions or inaccuracies. I always advice caution when it comes to signing such forms, because I have known assessors to use argue (falsely) that such a signature means that the family agrees with the outcome of an assessment - and yet the outcome of an assessment is not known until later, and assessors don't have the power or right to make the final decision.

When I say it wasn't possible to read some of the document, I mean it was illegible due to bad handwriting.

Hi Ellie - normally the Fast Track process is done when it's clear that a person is either in a period of rapid decline and/or at end of life. It's good that CHC has been put in place - as that's the whole idea of the Fast Track. It sounds to me, though, as if this is now turning into a 'normal' assessment process, which doesn't seem right at all. Also, if you have not been involved in the completion of the Checklist and DST, this is also incorrect. But those two things are not needed in the Fast Track process.

Christine, "The whole system is ludicrous"........ So it seems. So it likely is.

Just a thought...

If your loved one is in the same boat as mine, in that :
1. All that they own is a slowly accruing pension and perhaps a small amount in savings.
2. if your council is like mine, one that carries out a means test, pays for the care and then demands reimbursement.
3. If you do not have a Lasting Power of Attorney or a Deputyship.
4. If you are doing this out of principle as opposed to trying to preserve an inheritance. (nothing wrong with that either).

Then my advice would be to refuse to reimburse the council until all appeals are exhausted.
The alleged debt is not yours. The council cannot really go to court until all appeals are concluded anyway. It is the case that you cannot seek redress from a court until appeals are concluded, that must by all logic apply to a council too.
Even if 3. above applies to you I might still do it this way.

The reason? If the County Council takes your loved one to court, then insist that the CCG attends because even after appeals the NHS might have made an error that their appeals process could not address.
There is every probability that you can persuade a real judge to consider Ms Coughlan's needs in comparison with your loved one. The documents in the CHC assessment would likely be necessary in the case too.
There is every probability that you could display wrongdoing or even illegality by both the NHS and the council in front of a judge.

Bear in mind that throughout this process, the CHC appeals system does not allow anyone to address illegality or wrongdoing; junior staff at the NHS and local council often does not understand or are not sufficiently senior to be allowed to consider matters to be within the remit of the appeal. A real court would be obliged to rule on such matters.

So the trick is to list every reason that they are wrong. Include documentation. Include the law because it takes precedence over the National Framework. Then include the DST rules. The National Framework and Practice Guidance rules. And any other local procedural rules that you have uncovered. Don't forget the council's similar rules in all of this too.

I might add that doing something very similar will gain greater attention from an Independent Review Panel too.
So in a nutshell..... Describe each single point of dispute. Show why they were wrong by listing every supporting document that you can.
Then repeat over and again. My last IRP appeal documentation ran into over 80 pages of text without inclusion of the reference material.
Their reply ran to over 65 pages.

Of course, lawyers might well need to be used in any court action. If you feel strongly enough then you may think it better to spend the loved one's cash in an attempt to protect the cash from the automatic payment to the council that would happen otherwise.
I would rather give it to the lawyer than to an obviously recalcitrant council that seems to be in cahoots with the NHS in fallacious decision making in any case.

This has all been a personal opinion. I would in any case have a quick chat with a specialist who understands both the CHC and the council billing side of the matter.

It is also possible to defend against the council's claims in a court, considerably more easily (usually less expensively too) than trying to take them to a court over a series of infractions.

Just a quick one Christine, The recent IRP that we attended stated that inability to communicate was definitely a healthcare need in person with loss of cognition - on the grounds that were they to become any poorlier, or hungrier, or thirstier, or needed the toilet etc. they would not be able to tell anyone and then explain the circumstances thereby making treatment or care more difficult to provide. It was seen as unpredictable and complex and intense. For very obvious reasons.

Every care need that you can identify requires you to play up its obvious manifestations. Then you need to look at the "what if" aspect of the care need and "what if" the care is not given. What goes on after the need is met. The longer you look at it the more complex or intense the need becomes, so a long description of care is needed rather than just a single line in care home notes.

As for the LAs..... Don't get me started.....
Why the Taxpayers alliance has not cottoned on to this double taxation malarkey I have no idea. After all we all pay for the NHS. And many of us pay local council taxes too. For the latter to be allowing the NHS to look considerably less expensive than it is (potentially profitable) and a better prospect for private companies to invest in is a travesty. It also removes money from the LA's coffers that is supposed to be spent on local infrastructure and projects that benefit all local people and not just those that the NHS will not pay for. This is the dodgiest hiding of central Government expense that I can ever remember.

Hi Christine, This is just my opinion.

In the case of a self funder, I would definitely seek the best solicitor and barrister combination that my loved one could afford and blow the lot in an attempt to get the LA/NHS to behave. I would start with the LA's remit to provide the care. That was, after all, the basis of the Coughlan case.

That way, if fortunate, (unless you have chosen the locality's most expensive nursing home), you will get the NHS to start to fund, else at the same time you will lower the savings to the point that the LA has to get involved with the funding. (That of course all depends upon capital, assets and pensions etc.) Many people only have some small savings and a regular pension.

It seems bloody minded but in a similar case as mine, I would rather give it all (that part over £14,000), to lawyers than to the home and subsequently to the council in repayment for their involvement. I have been assured by lawyers that using the money to protect the money, as it were, is lawful.

Hi Christine,
I try to start with the local authority's (LA) remit. If you understand their limited remit to provide nursing care and accommodation in which to provide the care, then it all becomes clearer. In many circumstances, it is actually illegal for them to accept nursing care needs. Similar illegality for refusing to provide care cannot be shouted in the faces of the NHS.

One of course has to jump through the NHS' CHC hoops but if every argument that you make (ignoring procedural problems for a while), looks at the claims made by the NHS that care of any kind at all, is able to be provided by the LA, then you have a better ability to win, (If you can call it that), at an Independent Review Panel (IRP) at some very much later stage in the future. Nor would I pay the LA in the interim. (That is my way of doing it. You might choose to pay.)

At a recent IRP a Commissioning Support Unit (CSU) boss stated that a "MEDICAL NEEDS TOOL" was necessary because another IRP had told them to use one in making Eligibility Decisions. That of course is nonsense. They were likely told that the DST should be completed in such a way as to support the care of the patient..... a kind of skeleton care plan with the emphasis on healthcare and medical needs if you will.
Their response was to strip out all of the needs write them in a form and then to discuss only MEDICAL NEEDS. Which of course could be done by looking at and extrapolating outcomes from diagnoses alone. (which is not permitted in the National Framework). It was decided at our recent IRP that the CCG/CSU had indeed stripped out all needs that were not MEDICAL NEEDS and it was implied that it was foolish to have done so.

To give you an example: For the NHS to state at each domain of a DST that any need is complex but not complex and intense, does not alter the fact that they have admitted a need exists, (just at that one point perhaps), and that it is beyond the remit of a LA to provide for. They often use phases like: "There is some intensity but it is not complex."
That was bourne out at a recent IRP, that one does not need to have complex AND intense AND unpredictable needs. So if a single need in a domain is aligned with any one of the criteria then that starts to put the whole matter beyond the remit of a LA to provide nursing care.

I know there is so much more to this. It does however help when one looks at the LA and their role in this first. After all the Coughlan case that spawned the National Framework was taken up against a LA and not the NHS.

That's good advice, Miriam. Thanks for your comment. I imagine you know the process and all the guidelines inside out by now, given what you've had to go through. You're right that in many instances (and certainly according to many reports we receive from families) if you read the guidelines and familiarise yourself with the process, you'll often know more than the actual assessors.

The system is deliberately designed to be unwieldy and time consuming. It sometimes feels like that is all that I do....... But I have every sympathy with you, having been at this over and again for the same two relatives since 2009.

I think you're right, Christine, that it can all seem so daunting that many people do wonder if they can carry on. As I'm sure you're aware, a decision making panel should only overturn a CHC funding recommendation in exceptional circumstances, as stated in the National Framework page 31, paragraph 91: "...a [decision making] panel should not fulfil a gate-keeping function, and nor should it be used as a financial monitor. Only in exceptional circumstances, and for clearly articulated reasons, should the multidisciplinary team’s recommendation not be followed." https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/213137/National-Framework-for-NHS-CHC-NHS-FNC-Nov-2012.pdf

Keep going Christine. Bloody mindedness and logical argument will win out.

What an awful thing to be told, Jenette. That is indeed heartless. I'm glad you have a solicitor helping you.

Hi Jenette, Sorry it has been so tough.

There is an almost universal misunderstanding of the rules by even nursing home staff (even if they know any), I was told the same thing in an e-mail by my father-in-law's nursing home manager, a registered nurse to boot. That "CHC is only for patients with serious medical needs or that they are in the last stages of life". No surprise then that she kept her mouth shut and barely supported us and likely supported the MDT at the private session of the CHC assessment.

Firstly. A patient is expected to have the Nature of all of their needs, (not just medical needs), cross referenced and applied against the criteria of complexity, and/or unpredicatbility, and/or intensity and the need for continuity of care. There is also a requirement to establish if the total care needs are beyond the LEGAL remit of a LA to provide.

Separately is the Doctor-led fast track process for patients that are expected to die.

In addition to your CHC appeal, I would hope that your solicitor has contacted the council with his or a qualified medical person's opinion from a reading of the DST.

All the best, keep going.

That's good advice, Chris - and well done for sticking to your guns. Good point about power of attorney, too. The care notes are vital - and so often they're inadequate and inaccurate. I would advice anyone to check the care notes (daily care note and care plans plus any other reports or information that supports a case for funding) well in advance of any assessment, so that you have time to ask the care provider to update them if they don't reflect your relative's needs.

Hi, As usual everyone is having the same troubles as have been ongoing for years.

In reply to Chris above: The NHS cannot refuse medical records including CHC records if a family member asks for the info and that it is sent to the person who is the subject of it..... i.e. to the patient. Medical records may be held at many places and require payment of about £50.00 maximum. The CHC records should be entirely free because being able to hold them in your hands is Framework requirement.

In addition to that, The National Framework requires a comprehensive description of the reasons for a refusal and a copy of the Decision Support Tool as a minimum, after a CHC assessment. So if, they, like our CCG demands that the patient asks for the DST then they are deluding themselves and are actually breaking the National Framework.

At a recent Independent Review Panel (June 2015 IRP), (third success for my mum and I don't believe that she is any worse than most peoples relatives on this site), it was stated that the CSU (soon to be privatised in 2016), that works for dozens of CCG's in the region, does not send DSTs because many people are not at home to sign for them.....duh! My mum and father in law's nursing homes have very nice receptionists that sign for all sorts during the day...... Neither of my relatives goes out unless they are going to hospital.
The NHS seeks to win at all costs, careers are likely made based upon the latest nonsense in the vein of cost savings..... nothing else matters and in that they will lie lie lie. There appears not to be any sanction for such lies and deliberate mismanagement within the National Framework.
One needs the lengthy distraction of maladministration law or even to go for civil fraud charges if facts and law are recklessly misstated.

If you search around the Information Commissioner's Office (ICO) website you will doubtless find their interpretation of the law and case law too regarding third party applications for data.
It states quite clearly that a person close to the data subject can request the data to be sent to the data subject. There is nothing in that interpretation that allows them to refuse on the grounds that the patient has no cognition.
After all, when a loved one dies (the ultimate in lack of cognition), bills and correspondence still arrives and someone (not always an executor), is expected (POA or not) to deal with the matter.

One can deal with a loved one's troubles, "In their best interests". It usually involves discussing matters with a medical or legal professional so that a consensus to solve an issue can be agreed. It takes lots of repeating. For example my father-in-law collapsed in hospital a few days ago.... immediate NHS reaction.... He has no legs..... he has a brain injury....... he is 76 years old...... he's in here with gall bladder troubles..... He does not have a "DNR" So will you consent to allow us to let him die please? Or implications close to that. He is in intensive care again because once again no one actually listened to us when we stated that he was not this humorous chap..... that he did in fact think that he was in the pub and he really was waving a ten pound note about in the hope that the nurse would get him a pint, "and one for yourself". He even told us where the doctors kept the pool table and that he was playing against one earlier. Not bad for a man with no legs! The reason, he is infected and three days of intravenous antibiotics has never solved the problems. Last time he was on a prophylactic tablet dose for months..... But what do relatives know?
This has happened on every admission to hospital in 8 years. He's is here today,because we argue "in his best interest" for his wishes to be resuscitated to be met when hospital staff are all for pulling up the bed sheet over his head. (P.S he does not have dementia but it appears so when he is on morphine, or infected). On a good day he can do the crossword in his paper without writing down the answers (arthritic hands), .... that's more than I would want to try.

If your relative has a state pension one can apply to the DWP for "Authority to Act" in pension and benefits matters. Don't forget that in many cases it is mainly their state pension that will be targeted by the local authority (L.A.) if CHC funding is stopped or refused. You would have a right to refuse to act until such time as the L.A try to take (without a POA, not you) your loved one to court for the money. It is also the case that if funds have built up, it might be better to spend some of them in their best interests by engaging a specialist lawyer. Better the lawyer get it perhaps, than the L.A. Just a thought.

The L.A tried the final court threats four months ago. Their "special Projects Team" wrote a lovely letter quoting Court Procedure Rules and my need to adhere to them whilst failing to give the correct address and telephone number for a reply. Then at the L.A, having layered barriers of under powered underlings that were not permitted to give me an address or phone number for the person at special projects either. The time that I took would have cost my father-in-law around £90.00 if a lawyer had made the calls.

I asked them to take the matter to court. That I would require the NHS to attend because they could equally owe the funding. That the entire CHC matter would need to be heard in open court before a real judge and that perhaps more inhibiting case law might be generated to thir disadvantage..... The limited remit of an IRP to alter the CCG's recommendation has always been an issue with me even when very obvious forgery and fraud has occurred. To date I have not heard from the LA's special project's team..... I believe that for a while at least, they are hammering at others with less obvious will to hammer back.

Wishing you all the best and luck.

That's good news, Peter. Thanks for your comment.

It sounds as though there have been several mistakes made in your mother's assessment process. Rosemary, not least that there are no notes available. There should have been comprehensive notes taken at the assessment meeting (recorded on the Decision Support Tool) if it was a multidisciplinary team assessment and you should have had a copy of those.

What a difficult situation, Linda. You mentioned that you're not considered next of kin because you're the younger sister. I'm not sure that's correct - although I'm not an expert on this as a specific thing. Do you have power of attorney? If not, you may want to consider applying for a deputyship order. You're right that there often seems to be a conflict of interest when it comes to care providers and Continuing Healthcare. As you say, people who are self-funding pay the most.

You have my sympathy Linda....my sister and I are at the beginning of that long road with our Mum.....I would like to ask where you found out that NHS Funding was not on a par with Self Funding? This would maybe explain why our Care Home Manageress has been so denigrating, to the point of rudeness in filling out the forms to get assessors to come to the care home and see Mum....we insisted she signed the forms and included our opinions of Mum's condition which I'd typed out on a separate sheet ....Mum had been given mostly Cs and a couple of Bs, whilst in our opinion she had at least 3 As, and example of which was one of our As was for Cognition (Care Home Manageress had given C) and this for a lady who knows nothing and nobody - hardly speaks and makes no sense when she does speak and is suffering from rapidly worsening Vascular Dementia...anyway just received the letter saying Mum not suitable for NHS Continuous Health Care, so they are not even sending their assessors!!

Thanks for your comment, Sue. What an appalling experience you've been having. I'm so glad you have the MP helping you - and that she seems to be able to make some difference, even if she can only do so much. You're quite right - the whole thing is way beyond belief at times.

Val, make sure that you are not contributing to his care needs from your own savings or from your half of any joint accounts.

I wish you well with the appeal, Val. I'm sure many people reading your comment will empathise all too well with what you're saying. The whole thing can be so frustrating - to say the least. I'm glad you've had support from your MP. (Keep in mind that the information on Care To Be Different relates to the CHC system in England - although the broad principles are the same in Wales too.)

Thanks for your comment, Jill, and your kind words. I'm so glad you've been able to secure CHC funding. That's good news. Thanks for the YouTube link, too. Yes, Luke Clements' videos are very helpful. Wishing you well.

Thanks for your comment, Elspeth. The comments from the assessor are unbelievable - and yet all too believable, sadly. They show ignorance at best and contempt at worst, in my view. I wish you well with your complaint/appeal. Let us know how you get on. I completely agree with you that incorrect assessments and the playing down of needs not only jeopardises funding but also puts people at risk of neglect.

Thanks for the link, John.

What a dreadful experience, Karen - and sadly one that many families can empathise with. I agree with you that needs are often played down - even when it's painfully obvious that a person is seriously ill. Have you thought of making your case more public via the press? (I'm not suggesting you definitely should, but it's just a thought.)

John
ref the Council's reply to your challenge to its care charges. Nursing and/or other healthcare services can only be characterised as social care when those services are no more than incidental or ancillary to the provision of accommodation. But before accepting responsibility for her care and raising any charges for social care, the Council is required under S22(1) Care Act 2014 to be satisfied that the nursing etc.,services are "merely incidental or ancillary" to its accommodation etc services. Has it done so? As understood, your position is that the nursing services ARE more than incidental or ancillary to the accommodation and that, as a consequence, your mother is eligible for NHSCHC. From what you say, I would agree. Given that the Council has charged your mother for care, it should be asked to provide written evidence to show that it has complied with S22(1) and on what basis it considers the nursing etc services to be "merely incidental or ancillary". It should have as it otherwise wouldn't be in a position to raise charges. Someone, somewhere in the Council must have sanctioned the charge.

The next step to consider is does the Council really understand what is meant by "incidental" and "ancillary " services. I'm not convinced that, on the whole, councils (and the NHS for that matter) do. But this is the crux of the matter. If your mother was "discharged" from hospital with long-term healthcare care needs which require the provision to her of nursing and/or other healthcare services AND which could only be provided to her in accommodation other than her own home then it is clear that her aim was to receive nursing etc services rather than accommodation. It is important to note that the (care home) accommodation is required in order to facilitate the provision of nursing services - this is why S3(1)(b) NHS Act 2006 exists (see below). The provision of nursing etc services constitutes an aim in itself and is NOT a means of better enjoying the accommodation. If it was the Council would be right. On this test, the nursing etc services CANNOT be characterised as an ancillary service to the provision of accommodation and she is eligible for NHSCHC by virtue of regulation 21(7)(a) of SI 2012/2996. On a primary law approach, your mother is eligible for nursing services under S3(1)(c) AND accommodation (which includes social care) under S3(1)(b) NHS Act 2006. In short, NHSCHC.

I would be grateful for some advice. I have been trying to get retrospective continuing healthcare for my late Dad since 2012. It has been a long and difficult process for the family. We have recently received a letter saying that my Dad did not qualify for funding. However, when I looked at the DST the MDT found that he did qualify. When I questioned the NHS they said they had overruled the MDT recommendation. I looked into the matter and discovered that the National Framework states that it is not the job of the CCG to overturn MDT recommendations. When I explained this to the CCG they told me that the National Framework was written for ongoing cases, and not for retrospective cases. What should we do now? It has bee a long process and I am not sure we have the energy to take it any further. Thank you

Thanks for your comment, John - and for your advice to others. You're quite right that it's vital to keep notes of everything. This article may help too: http://caretobedifferent.co.uk/how-keeping-a-journal-helps-in-a-care-funding-application-and-appeal/ You're also quite right to refuse to pay care fees until the CHC process is complete - as it's not yet clear who is responsible for funding. It sounds as though there as been some appalling maladministration in your mother's case. Well done for standing your ground so far and in trying to get hold of records and correspondence. Not easy.