We are often asked “what is the ‘well-managed need’ principle?”
This remains a difficult and highly controversial topic that is generally misunderstood and misapplied by both Clinical Commissioning Groups (CCGs) and families alike. You can use this principle to support or decline an application for NHS funded care, and your approach to the issue largely depends on which side of the fence you are on.
The different interpretations and application of this principle are directly attributable to the distinct lack of clarity in the National Framework.
So what is the ‘Well-Managed Need’ Principle?
The National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care (revised 2018) seeks to provide clearer guidance on the ‘well-managed need’ principle, but in reality, does no better than the previous 2012 edition of the National Framework.
The National Framework, as it is known, sets out the processes and principles of NHS Continuing Healthcare Funding (CHC). It consists of 167 pages of practical guidance and support to CCGs when carrying out their assessments of an individual’s eligibility for CHC Funding.
When making a decision about eligibility for CHC Funding, the National Framework states that CCGs should not ‘marginalise’ (ie undervalue or minimise) a health need just because it is successfully managed. In short, just because a need is under control doesn’t mean that you can disregard it when assessing an individual’s eligibility for CHC. Otherwise, any intense, complex or unpredictable healthcare needs could be overlooked or underrated upon assessment, just because they are being better managed. This outcome could result in a lower score in one of the 12 Care Domains (usually “Behaviour’ ‘Nutrition’ or ‘Medication’), and in turn affect the overall outcome and chance of the individual being awarded CHC Funding.
Remember: Just because a need is under better control (ie well-managed), doesn’t necessarily mean that it has gone away – it may still exist, but is just better handled – that’s all.
The National Framework establishes that only if the healthcare need has been permanently reduced or removed entirely, such that active management of the need is no longer required, should it have a bearing on CHC eligibility.
Tip: If the CCG seeks to play down or dismiss your relative’s needs at a CHC assessment on the basis that they are ‘well-managed’:
i) Ask them exactly what they mean by this in terms of your relative’s specific needs?
ii) Ask them to define the phrase ‘well-managed’?
iii) Quote Paragraph 63 of the revised 2018 National Framework which says that a well-managed need is still a need – see below:
“NHS Continuing Healthcare may be provided in any setting (including, but not limited to, a care home, hospice or the person’s own home). Eligibility for NHS Continuing Healthcare is, therefore, not determined or influenced either by the setting where the care is provided or by the characteristics of the person who delivers the care. The decision-making rationale should not marginalise a need just because it is successfully managed: well-managed needs are still needs (refer to paragraphs 142-146). Only where the successful management of a healthcare need has permanently reduced or removed an ongoing need, such that the active management of this need is reduced or no longer required, will this have a bearing on NHS Continuing Healthcare eligibility.”
The concept of ‘well managed’ needs is also dealt with in more detail in Paragraphs 142 – 146 of the National Framework, which we have set out below for your convenience. The key phrase that “well-managed needs are still needs” is repeated again:
“Well-managed needs
142. The decision-making rationale should not marginalise a need just because it is successfully managed: well-managed needs are still needs. Only where the successful management of a healthcare need has permanently reduced or removed an ongoing need, such that the active management of this need is reduced or no longer required, will this have a bearing on NHS Continuing Healthcare eligibility.
143. An example of the application of the well-managed needs principle might occur in the context of the behaviour domain where an individual’s support plan includes support/interventions to manage challenging behaviour, which is successful in that there are no recorded incidents which indicate a risk to themselves, others or property. In this situation, the individual may have needs that are well-managed and if so, these should be recorded and taken into account in the eligibility decision.
144. In applying the principle of well-managed need, consideration should be given to the fact that specialist care providers may not routinely produce detailed recording of the extent to which a need is managed. It may be necessary to ask the provider to complete a detailed diary over a suitable period of time to demonstrate the nature and frequency of the needs and interventions, and their effectiveness.
145. Care should be taken when applying this principle. Sometimes needs may appear to be exacerbated because the individual is currently in an inappropriate environment rather than because they require a particular type or level of support – if they move to a different environment and their needs reduce this does not necessarily mean that the need is now ‘well-managed’, the need may actually be reduced or no longer exist.
146. It is not intended that this principle should be applied in such a way that well-controlled conditions should be recorded as if medication or other routine care or support was not present (refer to Practice Guidance note 23 for how the well-managed needs principle should be applied). The multi-disciplinary team should give due regard to well-controlled conditions when considering the four characteristics of need and making an eligibility recommendation on primary health need (refer to paragraph 59).”
Unfortunately, Paragraph 143 above gives only one flimsy example of well-managed needs! In our opinion, this example is grossly inadequate for such an important and controversial topic, and does not really go far enough to assist CCGs or families in explaining the concept clearly. Given that this is such a widely quoted principle, the revised 2018 edition of the National Framework missed a great opportunity to clarify the issue beyond doubt. In fact, the 2012 National Framework example in Practice Guidance Note 11 was marginally better, but also lacking in detail and definitive examples as to how the concept is to be applied practically.
More clarity, please!
Due to the lack of clarity and explanation, this is where it gets tricky. For example:
1) The ‘well-managed needs’ principle is most commonly discussed in the ‘Behaviour’ Domain. If an individual displays challenging behaviour but is prescribed anti-psychotic medications to successfully manage their symptoms, is this a well-managed need?
2) If an individual is resident in an EMI Dementia Unit with specially trained staff who are better able to deal with their challenging behaviour, is this a well-managed need?
There is no straightforward answer to either of these questions.
Both CCGs and families will often refer to the ‘well-managed needs’ principle when it suits their own position:
- CCGs use it to reject claims for NHS Continuing Healthcare Funding on the premise that the needs are less complex, intense or unpredictable because they are being better-controlled (ie well-managed).
- Whereas, families will quote it to support their relative’s claim for free NHS fully-funded care (ie just because the need is being contained and well-managed, doesn’t make it a lesser need). They will argue that, unless the condition hasn’t been permanently reduced or eradicated completely, then there is still a justifiable need for ongoing care intervention (to keep it under control).
We recommend that you consider whether the challenging behaviour has been removed completely, and also, what level of skill/intervention is needed to keep it ‘well-managed’. Ask yourself, if the either the medication was withdrawn, or if the specially trained/skilled staff were removed, would the problematic behaviour would return? If the answer to each question is undoubtedly “yes”, then, in that sense it is a ‘well-managed need’.
However, due to a common misconception, many families believe that their relative must be entitled to CHC Funding, arguing that if you removed their existing care intervention (eg didn’t manage their diet, feed them or assist with mobility etc), then they wouldn’t be able to survive unassisted. But, doesn’t that apply equally to anyone in a care facility?
For example, take the ‘Nutrition’ Domain. If a patient was not fed by staff, they would be unable to feed themselves and would almost certainly starve to death. The Care Plan provides for a carer to assist or feed the patient, and that results in an adequate dietary intake, stable weight and no nutritional risk. Is that a well-managed need justifying CHC Funding? Yes, it could be. However, beware! The CCG may take a contrary view and argue that the provision of diet and fluids is probably more of a social care need than a healthcare need, and the management of the need is unlikely to involve particular skill or require nursing input.
Similarly, it is commonly raised by families, specifically in the ‘Medication’ Domain, that it is only prescribed medications which are managing the patient’s needs. However, millions of people take prescribed medications every day to manage various healthcare conditions – the medication is keeping the symptoms under control and there are no healthcare needs arising from the diagnosed condition. So the ‘well-managed need’ argument would probably not apply here either.
When applying the ‘well-managed needs’ principle you cannot ignore management of the individual’s underlying daily routine healthcare needs which also have to be considered. So, for example, if an individual is taking anti-psychotic medication to help control their unpredictable physical and mental behaviours, hallucinations, talking to objects and imaginary people – the fact that the medication still has to be prescribed and administered by a healthcare professional to control behaviour does not take away the underlying challenging care need. On the contrary, the need still subsists, but is now better managed. Hence the slogan – “a well-managed need is still a need.”
In addition, Paragraph 188 states that, “When undertaking NHS Continuing Healthcare reviews, care must be taken not to misinterpret a situation where the individual’s care needs are being well-managed as being a reduction in their actual day-to-day care needs. This may be particularly relevant where the individual has a progressive illness or condition, although it is recognised that with some progressive conditions care needs can reduce over time.”
Therefore, CCGs should not ignore ongoing routine Care Plans, support and interventions needed to provide controlled care for an individual. Nor should they try and argue that a reduction in the care needs means that the situation is now well-managed and so can be discounted or ignored, when assessing eligibility for CHC.
In short, just because a need is well-managed, it does not necessarily entitle the CCG to refuse or withdraw CHC Funding. It is only one factor of many to be considered as part of the overall CHC assessment process.
One other such factor is the care setting which may influence the level of care required. Paragraph 145 above, and repeated in Practice Guidance Note 23, “How should the well-managed need principle be applied?” states:
“23.1 Care should be taken when applying the well-managed need principle. Sometimes needs may appear to be exacerbated because the individual is currently in an inappropriate environment rather than because they require a particular type or level of support – if they move to a different environment and their needs reduce this does not necessarily mean that the need is now ‘well-managed’, the need may actually be reduced or no longer exist. For example, in an acute hospital setting, an individual might feel disoriented or have difficulty sleeping and consequently exhibit more challenging behaviour, but as soon as they are in a care home environment, or their own home, their behaviour may improve without requiring any particular support around these issues.”
Both these sections of the National Framework recognise that an inappropriate care environment may be a contributing (exacerbating) factor to be considered when assessing needs. Sometimes, an inappropriate care setting can produce a false reading by increasing anxiety levels (eg disorientation) and the need for increasing care. For example, an individual with cognitive impairment may exhibit worsening behavioural issues in an acute hospital setting or unfamiliar surroundings. But, what would happen if the stressor was removed or the care setting changed for a different, more familiar environment? Once back in more familiar surroundings, is any reduction in their challenging behaviour due to the fact that their needs are now better controlled and being ’well-managed’ (ie are there still healthcare needs that should be CHC funded by the CCG)?
Instead, the National Framework appears to encourage CCGs to look beyond this and consider whether the change in environment has actually reduced or even removed the challenging needs entirely – in which event, it may no longer be a case of a ‘well-managed need’ (suitable for CHC funding) – but one of low or no needs. This outcome depends on which side of the fence you approach the issue and the result will, of course, have a direct bearing on the eligibility assessment for CHC.
In conclusion
The latest version of the 2018 National Framework only adds to the confusion of what is a ‘well-managed need’.
The NHS created this phrase, and should either make the principle much clearer for everyone, with a full explanation of what it entails with worked examples, or else, just abandon this phrase, as it currently serves no real benefit. A mere few paragraphs dedicated to such an important concept, which is used as a trump card by both CCGs and families, surely needs much greater clarity and detail, so that it doesn’t remain highly contentious and frequently misapplied.
Remember: Unless the healthcare needs have been permanently reduced or been removed completely by the better-controlled (‘well-managed’) care intervention, then stand your ground if the underlying healthcare needs still subsist. Quote Paragraphs 63 and 142 of the National Framework that a “well-managed need is still a need!”
Let us know if the CCG have used the ‘well-managed needs’ argument to try and justify ineligibility for your relative’s CHC Funding, and if so, how did you respond?
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My Mother-in-Law, who suffers from Vascular Dementia, was committed to a mental health unit in July 2019, under Section 2 of the Mental Health Act, as a result of violence towards family members. Over a month later we attended a meeting held under the Mental Capacity Act 2005, where we were told that my Mother-in-Law was fit to be discharged into a high residential, self funding, care home and was asked what her financial situation was. We objected to disclosing this information on the grounds that no initial checklist assessment for continuing healthcare had been carried out. We was told that she didn’t need one as she would not reach the necessary criteria for healthcare. We insisted on an initial checklist being carried out, which was, some days later, without our knowledge or presence. She was turned down for continuing healthcare and I was told that there was no appeal procedure. In October 2019, I submitted a request for a second initial checklist to be carried out, on the grounds that the first one wasn’t carried out correctly. I explained that my second request was not an appeal against the first decision, but a request to the local NHS CHC team to carry out a second checklist assessment, as is allowed under the NHS Guidelines for Continuing Healthcare. Ever since then my request has been lost in the system. It was initially registered as a complaint, but not investigated. In January 2020, I received an apology for the request being dealt with incorrectly, but it was still not forwarded to the appropriate NHS CHC team for their attention. I therefore registered a formal complaint against the NHS in January 2020. I received a response from the complaints team that my request would be forwarded to the appropriate department for their attention . In May 2020, not having received any response to my complaint, I wrote to the NHS, asking them to expedite the matter. They responded last week, again apologising for the delay, stating that my complaint had been lost in the system, but still nothing about what has happened to our second request for another checklist assessment. In the meantime, the NHS have held a discharge from hospital meeting for my Mother-in-Law, which we refused to attend on the grounds that she could not be discharged from the hospital before the question of continuing healthcare and any appeals, had been resolved. They ignored us and have decided to discharge her into a care home of their choosing, despite our concerns that it would be dangerous to do so as a result of Covid 19 in care homes. My Mother-in-Law has now been in the Mental Health Unit for ten months as a result of the NHS still not not responding to our request for a second checklist assessment. The family have Power of Attorney for financial matters, but not for health. Where do we go from here?
Hello Michael,
You have come to the right website to reach out for help! There are lots of informative people who can offer free help and guidance. It is only their opinions but I used this forum to successfully secure full funding for my late father at NHS Independent Review.
You are right to stand your ground over the shambolic way in which your MIL’s case has been handled. They have not been following the National Framework. A checklist threshold is intentionally set low, in order to ensure that all those who require full consideration of their needs have this opportunity. Whatever the result of the checklist, the decision including the reasons why the decision was reached should be communicated clearly and in writing to your MIL and you as their representative. At this point you should have been provided with details of how to challenge the decision as you have a right to ask the CCG to reconsider the decision. To be told you could not appeal is WRONG! You were denied the opportunity to challenge the decisions and put forward your reasons for eligibility.
The apologies for lost complaints is shameful! I urge you to be vigilant with all your correspondence, be it email or paper. It’s going to be a difficult journey trying to navigate CHC especially in these times, but you must be persistent.
I would continue to demand a Checklist and answers for the complaints that you’ve submitted.
In the meantime, download the NF and read everything you can about the process.
Good Luck
Hi Micheal,
During any CHC funding disputes, you do not have to pay a penny, until the NHS resolve the dispute.
Which could years if you have to go through IRPs, so stand your ground. If you have a Financial PA, then you have the right to state that this would be fraud to cease moiney from her estate without “due process”, and a breach of her Human Rights not to have access to a fair system and illegally taking any of her estate away.
Read up on ; Human Rights for Protocol 1, Article 1: Protection of property. You can also insist that the CCG go to the Court Of Protection(COP) to submit process to try and aquire funds from her estate.
You could also insist on a “Mental sectioning 117” process, perfroomed by two docuors as well, which secures CHC health care funding.
You didn’t say if your mother-in-law is now in an EMI care system?
Also confirm if Social services did apply legislation for your mother-in-law? the “Coughlan” test case, and request the assessment from this. Is within the NF documenation, to be applied first and foremost,that Social services cannot provide any care beyond their “legal level of responsibility”.
A EMI care system is a well manged 24×7 locked down institutionalised facility, providing “Safeguarding” techniques all well above SS remit.
A FOI request from my local social services revealed this Q&A response :-
Q- Can XXXXX Social Services provide constant 24 x 7 social care (night and day) to patients within any location or setting and for an indefinite period?
A- Yes, for limited, identified cases. However, a Council can take resources into account when deciding which option to fund and arrange.
The above response is open to question – several years within EMI care system is NOT limited period – maybe the initial EMI respite period/the first several weeks are free as well, for the purposes of a “limited period”
I also assume you have watched the enlighting youtube video, on what can also be done.;
Ian Perkin vs the NHS over funding for his mothers care – https://www.youtube.com/watch?v=FTEsCg0AnTI
Good luck in pushing the SS/CCG for information, stating you will not be paying a penny for Health care.
Hi Michelle,
Thank you for your kind comments,
I understand you wanting to appeal appeal appeal,
But your comments reminded me l have been appealing continuously for nearly 6 years.
What most CCG ‘s do if you dont quietly go away ,is to brand you as a vexatious complainer,none of their complaints are properly investigated as the next step they usually take is to write back to you and inform you that the CHC assessment was carried out successfully, if you are not happy with our reply you can write,to the health ombudsman.
We all know what that means months of waiting to see if the ombudsman accepts your complaint, meanwhile the family are paying for the care of their relatives, and their estate is shrinking,or a person like me are paying our care Bill’s.
Now if and when you get to that stage you need to write 2 letters or send
2 emails to the local authority addressed to the director of adult social care ,
Stating that my relatives care is above the mearly incidental and ancillary line,and it therefore illegal for you to fund it,this information comes from the Coughlan court judgement in 1999.
Therefore please send my relatives care Bill’s to the CCG as they are responsible from now on to pay the Bill’s.
Then write to the chief executive of the CCG,with a copy of the letter you sent to the local authority,stating you will probably be hearing soon from the Local,authorities.
Watch their attitude change all sorts of threats will accrue namely your relative will be evicted from their care home,we will take you to court and so on,of course none of this will happen,why because they will do anything to avoid that type of publicity .you can inform the care home you are in a civil disagreement with the LA/ CCG/NHS,and tell,them to send the Bill’s to the NHS,later on you will find the NHS will pay the Bill’s or the LA with the NHS. Will share the bills,because taking you to to court is the last thing they need because they know in your defense you will be pointing out the law in the Coughlan court judgement
Just in case you wonder what l will do? I will do everything above in my comment section.
Hi all
I appreciate your comments and l have a good hope of getting legal aid,if not l will try for pro bono,l hope that being on pension credit should qualify me ,l went to the cab a year or so ago,and the lady issuing the advise,stated legal help is very expensive l said l know,when l explained l was on pension credit,she said l dont know but l will check if you would be entitled to legal aid.
She did her check and told me it looks like you are entitled to legal aid.
Look l am well aware of the NHS and LA’s ignoring the law,and l fully understand that some law firms do not do their jobs properly,that’s why Angela, recommends farley drek because we dont all get together and do it in a huge way the NHS are laughing.
But thinking back to Pamela Coughlan, she put at risk her compensation money from her accident to go it alone against the NHS,if l am able to get my case to court,one voice spelling out the illegal criteria ect of the NHS,is better then many voices spending years at IRP’s appeals the ombudsman,and complaints to councils and the NHS,at best it will result in another check list then the illegal criteria will then be applied in the DST again they have had us running around in circles for YEARS!
I for one s sick of it l need to go to court for the publicity, as for evidence, one of my sons,has assured me it will take him 3 wheelbarrow trips to,court to deliver to the solicitor all the evidence you have acquired over the last six years mum.
My family has long given up telling me to give up,because they know l will see it to the end, by the end they know l will never give up.
We need to set of a legal,bomb so to speak.
If l get to court,l hope that raising this illegal criteria with the judge will lead to a court decision,that this criteria is illegal,and that has already been stated in the Grogan judgement.the Grogan judgement was in 2006 a year before the NHS framework guidelines came out,at the time of the Grogan judgement all PCT’s had their own,criteria ,and in the new framework guess what the DOH put in their criteria ,the same criteria we have today it was likentheymwerebsticking one finger up in,the air and saying this to Coughlan judgement.
It really is unbelievable that for so many years the CCG /NHS have been a allowed to carry on breaking the law.
Hi Valarie,
Thank you for sharing your personal circumstances. I admire your determination in taking on the local authority. I hope you do get your day in court and your son does get the wheelbarrow out! We all know that the LAW is repeatedly ignored and claimants struggle with the complicated/subjective process that is CHC. My aim as a contributor is to continually urge people to appeal, appeal, appeal. So many families new to the process are frightened off because of the authority that those administering it seem to have! CHC’s think they can rewrite the National Framework and undertake MDT/DST’s to deny eligibility using their own criteria. They can’t! If only everyone shared your determination and passion, I’m sure many CCG’s would be overwhelmed with appeals.
We all have to keep this issue in the Spotlight, even more so with the current crisis!
Hello following the chat with interest have no intention of allowing the MDT, telling me it’s their criteria that they follow,last year l told them to adjourn the meeting, stating that l,would send them the 2018 framework guidelines, the Coughlan full court judgement, and the Grogan court judgement.
With appreviations along side and the legal books l obtained this information.
The nurse assessor looked flabbergasted, but she did adjourn it a fortnight later recieved a email,from the CCG stating my DST will be a little longer as the continuing healthcare nurse had resigned , the only reason l think she resigned is because she read the information online l told her where the best sites were to acquire the information.
Then my social worker rang l had a long discussion with her,and she went quiet,l then emailed the director of adult social services and gave him the knowledge of how to carry out the DST,and stated to him that l was well over the line and into NHS territory so it was illegal to fund my social careit was at that point that l informed him l was no longer going to pay my contribution to my care,that was just over a year ago.
I doubt they will ever take it to court,because both the LA/CCG dont want to let me loose in any court room,because they know what l will be telling the magistrates, the situation at the moment, is that both the LA /CCG are not communicating with me the LA is still,paying my Care costs,and they are all sending me emails when l email them,stating l am out of the office ect
This goes to prove that they know they should not be deciding NHS continuing healthcare, because the criteria are not legal.this is not me being a legal person, its because l now know what the law is,it makes a great deal of difference if you take books written by solicitors into court
I really think you have to take action like this,and refusing to pay your social care shows them you mean,business.
Hi grislaine,
The reason why l will not be using their criteria is because it’s not lawful you need to check this out by going to the Grogan case ,the judge found it unlawful,and states that the Coughlin case is the law to follow,
To further help you out print out the nurses and midwifery code of the RCN.
It states in there that the nurse is to obey the law of the land and Coughlan is still the law of the land.
Hi Grislaine,
Thank you for your reply but its precisely because the NHS with their criteria, and the CCG ‘s standing by the criteria saying this is what it is decided on is the reason why persons are assessed by this criteria.
Continuing healthcare is not decided on the nhs criteria its decided if you qualify by law,and that law is still the benchmark for CHC,whether the NHS likes that distinction of how it has to be carried out or not.
I took the view in books on nhs continuing healthcare that if one stands backs and looks at the criteria by the NHS,it not only sets the benchmark higher than mearly incidental and ancillary,but in each section of the DST one would have to be dead to qualify on what they have written down
I am in palliative care, and talking to the palliative care nurses they have told me fast tracks on patients with less than 6 weeks to live are turned down by my CCG,so bearing in mind these patients are dying it certainly looks like my CCG are going by,their criteria!
I have been told by the law society l should qualify for legal aid,so l will this time round go for an official review,if l am not granted CCG on these grounds that the DOH’S criteria in the framework guidelines are illegally applied in assessments instead of what the law of the land states in the Coughlan court judgement.
I have also written,to the director of adult social services at my LA and have asked him why is he funding clients care who are by their disability/illnesses,are well in the NHS territory,and charging them for care,
Reminding him what they only can fund in social care,as CHC is decided on a health need criteria (eg the judge in Coughlan stated if you have health needs the NHS covers all the costs of your care)as expected he has yet to reply to me. Also if l am turned down again for NHS continuing healthcare, myself and my 3 carers / PA’s will be pushing me in my wheelchair up and down the front of the CCG with placards and leaflets for the general public
I will be informing the public all about continuing healthcare through a megaphone telling them about how to apply for continuing healthcare, and l hope that people will be more informed about CCG as the CCG’s dont want CHC advertised like this.
Over the last year l have refused to pay my contribution to my social services care on the grounds that the NHS should be funding me.l have invited them to take me to court,l have not received any court summonses yet,
The reason why l have not been taken to court is because they know l have obtained over the last five years,law books on social care and NHS continuing healthcare, and l would represent myself in court from sections of the law from these books.
For example did you know if you refused to pay your LA for your social care,they cannot stop your care the only way they can hope to get you to pay the care Bill’s is to take you to court,just for the record since l,stopped paying for my care over a year ago,they are still paying my direct payments .
You would be correct that l obtained this information out of the books l bought.l have also bought Angela Sherman’s book how to get the NHS to pay your care.
I also suggest that you type in Luke Clements resources, he is a solicitor who teaches health and social care law at leeds university,l have the upto date version of one of his books,and also type in another legal charity called CASCAIDr it’s a legal charity who will give you advice on anything you want to know on CHC and social care,and it has a large selection of commissionsers decisions on both social and NHS care as you can see l think,we all need to get educated and a bit more proactive as regards the way continuing healthcare is administered at the CCG’s.
Finally my protesting outside my CCG will be hard for me because of my health problems, (l have 31 separate illnesses and massive side effects from my medications) but that will not stop me doing all l can to get the care l need from the NHS.
The phrase ‘active management’ is key. What is active management?
What is a ‘health need’?
They stray away from nursing care which is any care by any carer given to someone physically, perhaps mentally incapable, to the concept of health need’. Food is required for health, to argue the matter. Being fed is nursing.
I might argue that any care given that is equally available as a necessity due to incapacity in a hospital is the same outside.
Ergo any regular, repeated or unexpected care given, is to provide for a ‘health need’ and it will always be in the form of ‘active management’.
Because there is no such thing as inactive management of a health need meeting any need is perforce, active management.
Hi Chris-G,
Agree entirely with your comments. Withdraw “active management” or “managed needs” in any setting and deterioration is inevitable. I argued this point with a CHC assessor at a LRM and remember asking, what would happen to my late father if I decided to remove him from the setting, and leave him on the street corner and withdraw all the nursing care and interventions to keep him safe” I was told that was a ridiculous hypothesis.
Actually, my scenario isn’t ridiculous in the current climate, as we have seen in the news with the Spanish Army finding care home residents dead and abandoned in their beds. Yes, you might argue that many died of COVID, but isn’t it also the case that some of them will have died because all care/health needs/nursing being withdrawn?
Deterioration is a reality if you withdraw even the basic health need of being fed, hydrated, washed and your continence needs dealt with. And this doesn’t even touch on the impact of mental health. Add to that all the other complex health issues of mostly elderly residents then it’s my opinion that the needs then become, Complex, Intesnse and Unpredicatable!
The deadly impact of COVID is shining a light on the Care Sector and on the process of CHC and all that is wrong with it.
Isn’t it absolutely shocking and disgraceful that it has taken a pandemic to highlight just how underfunded and under- rated the Care Industry is. All Governments have failed for the last two decades to address this issue. Now the public must keep up the pressure on Government to ensure it’s kept at the top of the agenda! We must have change!
Thanks to Admiral Matthias again for all the work he has done so far!
Very much so. What you observe is true. However as others state here, you build on evidence of the key indicators. And so much more besides. You have play their poisonous game to the end.
For example someone I know received a large amount in restitution.
At a recent IRP in an attempt to regain the previous years, I made a comparison against what is known about Coughlan and other cases including some of my family who were continually funded.
The chair was briefly dismissive until I pointed out the framework where it requires such comparison and that decision makers are bound by precedent unless they express exceptional circumstances based on evidence and not judgement and then asked him to explain how the person’s needs had increased in the last year’s of her life compared against the evidence in records of a far more fraught and injured person when they first entered the nursing home.
In short. I asked why she could not be her own comparator.
He took a long time before he answered.
I also questioned the NHS advisor on the panel as to how she and a doctor would treat a patient with a given illness, barring total risk of immediate death (which might be exceptional circumstances), unless she and the doctor were following set down procedures based on comparison with what had worked before.
This was my prelude to arguing precedent in decision making. Something that is not understood by NHS and council staff is that precedent is required to be considered or as the court’s would have us believe, there can be no consistency in overlay decision making.
So to ignore Coughlan at the IRP level is to open the door to eventual county court action to recover money. A court that will insist that precedent is used and argued before a genuine arbiter.
I try without stating it, to get this across to IRP members… That this will not go away.
I might just add that at the recent IRP I mentioned, the IRP or NHS managers would not postpone so that the family could attend and say their piece.
Instead they wanted some very elderly relatives to purchase iPad technology, install the internet and attend by screen on TEAMS.
This they required with just a few days notice.
Time will tell if my lone advocacy over a screen has helped.
Hi Chris-G
Any court action will be extremely costly! The only people that make money out of this is the lawyers.
Like so many on this platform I was incensed by the way in which the law was continually ignored during my late father’s case. Unless you can convince a firm to take your case on as a no win no fee basis, you’re pretty much on your own. We initially went down the route of lawyers, but quickly realized that any fees incurred could not be claimed back as part of CHC. In some instances the cost of a case may outstrip the cost of recovering fees! Moreover, they do not argue a case on the law!!! They will appeal a case as set out in the National Framework. I know this as that is what happened in our case. We paid for work that I could and did myself. Nothing in the appeal from the specialist firm mentioned Coughlan or Grogan.
The only way forward as I see it, is to support people like Admiral Matthais and Victoria Derbyshire in highlighting the injustice of CHC.
I sympathize with all that you have said, but I would urge everyone to think very carefully before embarking on this route. Just my humble opinion.
Good Luck!
“but quickly realized that any fees incurred could not be claimed back as part of CHC”. Doesn’t the legal principle apply that the loser of the case must pay all the winner’s legal costs? If you know you will win…
Hi. The court action mentioned is in the county court. It would be against the council after going through their complaints and ombudsman procedure. And of course, the entire CHC nonsense to their ombudsman.
I might envisage a short period of cost so that the percentage sum paid to the court to begin a small claim is minimised.
The council is the only organisation subject to legal decisions in CHC matters. Coughlan was about the legal remit of a council to provide and to recharge for nursing care.
They have a legal duty to ensure that care is within their legal remit to provide and recharge for.
The NHS CHC part is led by the organisation that has no levers to attack on similar legal grounds.
I have tried for years, when councils are involved in pay – recharge situations, to get them to take my relatives to court for non payment. It could be argued in self payment cases that their situation is the same because the care is decided to be within their legal remit or the NHS would be paying.
So far no council has acted on their threats. This might be due to my outlining the likely defense strategy that would involve calling the NHS and council to explain to a judge, how care needs that, when compared with periods when CHC was paid, and of course the same comparison with the legal precedents, Coughlan etc. were legal for a council to provide for.
Lawyers do get involved in CHC matters. But I have yet to see a lawyer take on the council’s.
It seems that everyone gives up by then.
Hi Chris-G,
I admire you determination and your knowledge. How long have you been dealing with these matters?
I hope that you continue with your fight for justice, but I fear that most ordinary folk haven’t the means, time or energy to take on these organizations. In my own case it took almost four years to successfully appeal CHC. The inordinate amount of time that I spent on it can never be repaid, but I did get Justice!
Hi Chris-G
Agreed!
I have followed families posts/comments on this platform for a number of years now and I can’t think of anyone that has been successful in court action against a council or the NHS with regards to the Law/Coughlan/Grogan etc.
Perhaps CTBD can advise?
I would hope that any court action be it at County Level or High Court CTBD would be sharing this information to help others.
My personal opinion is that is that is a huge undertaking and financial risk to families who have already paid extortionate amounts of money to fund their loved ones care and therefore are calculating the risk of paying for legal action, which is by no means guaranteed. The legal might of those representing the NHS and local authorities would undoubtedly be greater than the average law firm.
I’ve thought long and hard about pursuing legal action especially for myself after the stress that impacted my own health, following almost four long years of battling my CCG and recovering my late father’s fees at IRP. I concluded that it I wouldn’t be able to finance such action without the risk of loosing my home!
The Law with regard to CHC is repeatedly ignored & manipulated by those administering the process but until Government is forced to deal with this issue then sadly people will continue to suffer the injustice.
I wish you well in your
Legal action and look forward to reading your posts.
Kind regards
M
Michelle Wetherall wrote:
“Hi Chris-G
Agreed!
I have followed families posts/comments on this platform for a number of years now and I can’t think of anyone that has been successful in court action against a council or the NHS with regards to the Law/Coughlan/Grogan etc.”
My understanding is that Case Law is built on precedent. If there had been court action which had found against the principles of Coughlan etc, then surely we would know about it and it would have had huge ramifications on the National Framework guidance? That’s why I doubt that there have been any court defeats in the way you describe. More likely any failures were due to it being judged that they did not meet the conditions set by Coughlan.
Hi Andy,
You are “spot-on!” I am concerned that some families are focusing all their energy for appeal at pursuing the legalities of CHC. I was trying not to get into any argument or heated discussions about the Law, which is why I always ask CTBD to advise otherwise. I post my humble opinions just to try to be helpful, nothing else! I haven’t anything to gain from offering my experiences. I successfully concluded my late father’s case in December 2019 with full restitution, together with the a full refund of the 20% tax of the interest on the refunded monies withheld by CCG for HMRC. This was no easy task, that went on for almost four years and was detrimental to my own health and well being.
It concerns me to read about Court Action, when it is quite clear that it would take a monumental effort from someone like Admiral Matthias or a combined action to actually take on the might of the NHS/CHC,
not to mention the cost to pursue it, that could take many, many years!
If organizations such as Age Concern, The Alzheimer’s Society or Parkinson’s UK haven’t stepped up to challenge CHC and the LAW, what hope is there for people like us?
Families of claimants haven’t got years and years to pursue the Law. I guess a high proportion of claimants die during the process of CHC. My dear dad died 18 months before mum was finally reimbursed.
So, that’s why I am always cautious about what I say on this forum, other than to continually encourage families to appeal and like you become very knowledgeable about the NF, in order that you can be well-informed to present an overwhelming case at a CHC appeal.
The nurse assessors involved in my father’s case, were nurses NOT lawyers or specialists in CHC.
They simply transferred information from nursing records to the DST. They lacked the analytical skills required to apply the K.I to prove a PHN.
The IRP is the last chance to get it right!
Michele, any money paid out must belong to the patient…
As such, I might take a gamble as anyone working in someone else’s best interests or with poa, actually has a duty to protect the other person’s money.
Tell a council that wants a recharged sum that you are spending it on lawyers to fight them and it reduces the money they can claim back for care.
No one should be using their own cash. No one should expect a large legacy. Unless they protect their loved ones cash.
Just a thought.
Andy, Michelle.
I make an entirely theoretical case for starting a small claim against the council, of around six months for self paid or council recharged care fees. This involves paying a small upfront percentage of the amount claimed. If every second person administering a case did this, the courts and councils would likely collapse.
This could only be done via a court once complaints and council ombudsman process has been undertaken, and even this would appear to require the completion of the CHC appeals process first or perhaps concurrently. Courts seldom allow action if appeals etc. processes exist.
Our personal cases involve council’s recharging and our refusal to do it for years after CHC had been withdrawn in two cases.
For six or more years, council’s chased us for money after it first became due and due to different staff doing it, we sent and resent the outline of the case we would argue if THEY took it to court… Pleaded with them that they did so… I wanted to help with some potential new case law if you get me…
No one ever took us up on it…
After six years, I believe, they cannot begin in a county court. Ergo, we now owe them nothing. Nor have we heard from them in either case, this year.
As for starting our own cases… I would, using a computer, simply list on a blank CHC decision support tool what is known about the ombudsman, care and court cases mentioned in the Framework and repeatedly quote at each domain, what is recorded at sec 157 of the framework.
Then I would make a very repetetive comparison with my case.
The council is contributory to the assessment and can appeal the decision themselves.
If they did not do so then they agreed the assessment outcome. They are the people directly subject to the Coughlan decisions owing to the creation of legal limits in care provision.
My comparison of cases and the sec 157 insistence that the decision makers make reference to what is known about the precedents when making decisions, would, I believe, be what has stymied my councils.
The framework actually insists that legal and operational precedent is taken into account. Because in law one needs very exceptional circumstances to ignore what went or was done before.
Although that insistence in obeying decision making precedent described in and existing as it’s own case law because of many legally quotable cases, is diluted by comments decrying the law and insisting that nothing can replace the (non legally defined) assessment process. The extras at sec 157 are really nonsense because they have little validity in law. The law does not say how this all works, only that there should be CHC assessments when required.
Like I wrote, as far as starting or defending a claim, it is entirely theoretical. But accepting that, why did two council having been given the outline, (more than twelve times in total), and the comparison evidence, fail to take action?
Good luck to you all.
We all know from Pamela Coughlans court case that the four criteria sections were placed in the framework guidelines, to blunt the Effect of the judgement of the court,the law society the RCN and many other disability groups,know this criteria is unlawful,a way the NHS and the government, hope to find a way around the Coughlan judgement. I get angry that we have to have our health needs measured,against criteria which they use to deny funding to very ill people,l was about to have my second DST when the covid 19 pandemic occurred,so l have no idea of the date when,it might be held.
When it is held l have told my CCG that l am recording it, they were not happy and reluctantly agreed.
As we go through the sections of the DST,and the nurse assessor mentions the sections of the particular domain,l will state this criteria is not lawful regarding the Coughlan judgement,and l expect the panel to remember that in all their decisions around DST,s that the mearly incidental and ancillary criteria resulting from the Coughlan court judgement is the lawful way for the NHS,to make all decisions on Continuing healthcare.
Will state that in every domain,and when the MDT state we will go out the room to make our decision l will state to them that your decision has to be made factoring in,the law of the land established by the Coughlan judgement.
The framework actually cautions practitioners about using their limited knowledge of the relevant cases such as Coughlan.
Then it insists that they only make decisions while taking account of what is known about those cases and others within their experience.
Somewhere around rule 157… If memory serves.
As such, an article by an IRP chair on this site that expressed a dislike of comparison with Coughlan etc., was in fact to have ignored one of the very few rules in the framework that is reinforced by law.
Law requires decision makers in almost all environments (council planners for example), to use precedent.. e.g. what went before. That is why the framework includes the requirements to compare Coughlan etc. against a current case.
Hi Valerie,
The whole process of CHC is subjective. At the beginning of our CHC journey for my late father, I felt the same anger as you are feeling now. I read so much about the cases involving Pointon/Coughlan and Grogan but in the end it mattered not at the IRP. I hear what you say about it not being lawful but from my experience it is a waste of precious time in pursuing this avenue, unless you are prepared to do so in a court of law, which will be costly and by no means successful.
Everyone who contributes to this forum knows that the Law is circumnavigated using the National Framework. I think in the Article with a IRP Chairman it says, something along the lines of Don’t use Coughlan as the NF is considered by leading legal authorities to be compliant with it.
Basically, it’s pointless trying to argue this point.
I would urge you to Prepare your evidence using the Key Indicators. Gather all the care notes and go through them meticulously and apply this using the four characteristics and you will have in my opinion have a far better chance of success at the MDT. Again i think the Chairman in the recent article said something that really resonated with me and that was this area isn’t done very well! Who he was referring to I’m not sure, but from my experience none of the nurse assessors we met with, were knowledgeable in this area. They summed up my father’s needs using the Key Indicators in 6 sentences! Disgraceful! My submission was in much greater detail and demonstrated to the IRP that my father did indeed have a Primary Healthcare Need. I am only using my experience to try and help others succeed, so please accept my opinion as just that! An opinion!
Good Luck.
Hi Michelle, I delayed my appeal for Independant Review Panel due to Covid-19, but I am now finally putting together a detailed submission. I have written a lot on the 4 Key Indicators and have tried hard to demonstrate high severity, complexity and unpredictability in my mother’s needs. But I am struggling with this paragraph from the NF: “Each of these characteristics may, alone or in combination, demonstrate a primary health need, because of the quality and/or quantity of care that is required to meet the individual’s needs.”. How do we know what is sufficient quantity or whether quality is high enough, if it the thresholds for these are not defined anywhere?
Hi Andy,
Good news that you postponed the IRP. Whilst Covid19 is a wicked disease, it’s certainly given you and others the time to research and prepare your appeal. Keep reviewing what you have written, so that you take out any emotion and keep focused on the KI’s. You only need to prove a PHN through one KI.
There isn’t anything set down about what is considered sufficient quantity or quality. Again it’s all subjective, but if you can evidence the requirement for your mum to have certain nursing/care interventions through out the day to keep her from deterioration then you need to highlight this. Likewise, if you mum has dementia then you need to link all the evidence to this. Focus on Intensity, complexity and unpredictability. The panel will know the Nature of your mother’s conditions. So what is intense about the interventions, what is complex or unpredictable about her care. Think about each hour of the day and what happens to keep her from deterioration. I remember taking a week of care from my dads notes doing exactly this.
I finalized my appeal with a page which summed up the Primary Health Care Test. It was at this point I carefully entered my father’s Parkinson’s disease prognosis. Which given the fact he had died in an emaciated state just 8 months earlier, was appropriate.
It isn’t easy to help from afar, but you are best placed to know exactly what interventions are needed hourly, daily etc to keep your mum safe. There is so much help available. I researched some random websites about Parkinson’s disease/dementia and whilst a lot wasn’t helpful, I did use some of what I learnt to present at IRP.
There seems to be a lot of debate going on at the moment about the law and Coughlan etc, but I would advise you not to use this at IRP. You will be talking to people who are well informed about the law regarding CHC, so unless you are prepared to instruct lawyers, then you are wasting your time and also “P****** “them off! Everyone knows that CHC needs reforming as it’s not fit for purpose but I see this as your one and only chance to get it right. It’s the end of the road, other than the Ombudsman which quite honestly is a waste of
time. I attended my IRP with respect for the panel, with confidence and humility. To be angry about the process and law will not help you to succeed.
Good Luck
Hi Michelle, “There isn’t anything set down about what is considered sufficient quantity or quality.” I did manage to find something when checking the reference given the National Framework to the Care 2014 act. I found this:
143. However, subsection (1) provides that a local authority may provide some healthcare services in certain circumstances, that is, where the service provided is minor and accompanies some other care and support service which the local authority is permitted to provide and is of a nature that a local authority would be expected to provide. This reflects what has become known as the “quantity and quality test”, arising out of the case of R v North and East Devon Health Authority ex parte Coughlan [2001] QB 213 (“Coughlan”).
So I just need to demonstrate that the multitude of health services she is receiving cannot be considered as minor! Sounds simple, except the CCG deliberately mislabels everything as Social Care. So I am also including a section analysing the definitions for Social Care and Health Care, drawing clear distinctions between the two.
As a continuation of my previous question, if “quality” and “quantity” of interventions is not defined anywhere, what is to stop the CCG from arbitarily setting the bar to whatever level they want?
Andy,
Perhaps this does happen in some cases, but from my experience this didn’t happen.
You have to show what interventions are taking place during a 24 hour period and to what extent they prevent your mum from deteriorating. .Again it’s all subjective. My interpretation of how many interventions during a 24 hour period is considered intense, will differ from the next person. So whilst I understand your question, all you can do is demonstrate is what is happening to your mum.
Good Luck!
Hi
My mother is in a care home and is being well cared for however she is 86 years old and has vascular dementia, type 1 diabetes and osteoporosis. Despite good care she still has frequent falls due to her becoming disorientated and forgetting that she cannot walk unaided. Can anyone tell me whether the fact that her insulin has to be administered by a health practitioner and is under constant review constitute a ‘well managed need that still subsists’?
Thank you
Hello Ghislaine,
Are you in the process of CHC? It is difficult to comment or help without knowing more about your mother’s situation.
However, from what you have said so far, I see no reason to ask for a Checklist for CHC to be completed by a clinician.
This website is very helpful for learning all you need to know about “Managed Needs” and the process of CHC and the National Framework.
Good Luck!