How relevant is the Coughlan Decision Today?

How relevant is the Coughlan Decision Today?

The Coughlan Judgment remains the single biggest legal landmark case in the area of NHS Continuing Healthcare Funding.

The Law Society stated: “The Judgment in Coughlan clearly establishes that where a person’s primary need is for healthcare, and that is why they are placed in nursing home accommodation, the NHS is responsible for the full cost of the package.”

Background

Pamela Coughlan was seriously injured in a road traffic accident in 1971. She sustained a spinal cord injury, causing complete tetraplegia (with sensory and motor paralysis) and in need of full-time care.

The accident left Pamela Coughlan with severe physical disabilities including partial paralysis of her respiratory tract. She can speak coherently with mental clarity, is able to use an electric wheelchair to mobilise by herself, can use a computer with voice technology (but can’t operate the keyboard), can eat with a leather strap tied around her right hand to hold a spoon in place (provided her food is cut up), and is able to drink with assistance (someone holding the cup).

What is often overlooked is that Pamela has Autonomic Dysreflexia – a life threatening condition which can result in sudden death. It is caused by ‘noxious’ stimuli – commonly bladder and bowel distension – below the level of the spinal injury. The stimuli messages are blocked and can’t get past the spinal injury, resulting in rising blood pressure (hypertension) until the stimulus is removed (eg the bowels are evacuated). Here’s a helpful link that explains the condition in more detail:

https://www.rnoh.nhs.uk/our-services/spinal-cord-injury-centre/medical-management-advice/autonomic-dysreflexia

Pamela is doubly incontinent, has high ‘Continence’ needs, requires frequent administration of suppositories, intermittent catheterisation every 3 hours, and manual evacuation for every bowel movement. Failure to manage her complex and unpredictable condition can be fatal.

You really need to read the full extent of her condition to understand the totality of her care needs. The Spinal Injuries Association have helpfully set these out in a lot of detail, and you can visit the link below for more information:

https://www.spinal.co.uk/wp-content/uploads/2015/08/Summary_of_Pamela_Coughlans_Care_Needs_For_Comparison.pdf

The Funding issues

Until 1993 Pamela Coughlan received NHS care in Newcourt Hospital. The Hospital was subsequently closed and Miss Coughlan was moved to a new NHS facility at Mardon House. Pamela Coughlan (and other patients) were promised that Mardon House would be their ‘home for life’. However, in October 1998, in breach of promise, the Health Authority decided to shut Mardon House, leaving the patients and Pamela Coughlan to find alternative accommodation.

In 1999, the NHS Health Authority tried to pass responsibility for Pamela Coughlan’s care needs to the Local Authority (via Social Services) by reclassifying her health needs as ‘social’ needs.

There is a critical distinction between ‘health’ needs and ‘social’ needs and it’s all to do with who finances ie who pays for the care package!

Healthcare needs provided by the NHS, must be provided free of charge at the ‘point of need’, and are not means-tested. Social care is provided by the Local Authority and is means-tested – meaning that you may have to pay for some of all or your care.

By reclassifying Pamela Coughlan’s chronic condition as social care needs, it meant that she fell into the auspices of the Local Authority funding. Her previously free package of care would now be subject to means-testing, with the outcome being that she would now have to pay for her own long term care.

Pamela Coughlan brought her case against the NHS and argued that funding for all her care needs (including food and accommodation etc) should be fully-funded free of charge by the NHS (and not subject to means-testing by the Local Authority).

In 1999, after a lengthy court battle, the Court of Appeal found in her favour, and ruled that her nursing care was the sole responsibility of the NHS. However, the Local Authority can provide some nursing care, but only when that is not the ‘primary health need’, as that responsibility falls on the NHS. This principle is now known as the ‘Primary Health Need Approach’.  

Read: Primary health need’ made simple – what does it really mean?

The Court found that unless the nursing care is:

1. ‘merely incidental or ancillary to the provision of the accommodation; and

2. of a nature that an authority whose primary responsibility is to provide social services can be expected to provide’…

then it is the NHS’s responsibility to provide for that individual’s care, even if they have been placed in a home by a Local Authority.

It was held that Pamela Coughlan’s needs were clearly of a scale beyond the scope that the Local Authority (Social Services) were expected to provide and so should be fully-funded by the NHS.

Coughlan raises hope for thousands of others battling the NHS!

Pamela Coughlan’s courage and success in fighting for her rights has since given nationwide encouragement to many thousands of people in a similar situation – who have been shunted from the NHS and subjected to Local Authority means-testing – placing them at risk of losing their lifetime savings or being forced to sell their home to pay for their care.

If this has happened to your relative, then you MUST ask for a reassessment urgently, otherwise your relative could be needlessly paying thousands of pounds every month for their care which could be funded by the NHS, free of charge. If your relative has already passed away then you can request a retrospective review of their care needs as a refund may be due!

Miss Coughlan said that “If you think you should genuinely be funded by the health service and you have similar needs to mine, or more, then you will win.”

Watch her interview here : https://www.youtube.com/watch?v=YaMXowPWxis

People going through the funding assessment process quite rightly refer to the ‘Coughlan’ case in support. This was an outstanding result and clarified the boundary between NHS and Local Authority funding.

Some years later, the Coughlan Judgment led to the introduction of the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care. The National Framework is designed to streamline the assessment process as to eligibility for NHS Continuing Healthcare Funding (or ‘CHC’) – a fully-funded package of free NHS care for ALL your relative’s care needs (including accommodation) if they have a ‘primary health need’.

The National Framework first originated in 2007, was updated in 2012, and was only recently revised in October 2018. It puts the principles of the Coughlan Judgment squarely into guidance for both NHS Practitioners and members of the public to consult when seeking CHC Funding.

Some families directly compare their relative’s care needs to Pamela Coughlan as automatic justification for entitlement to CHC Funding. Whilst Coughlan undoubtedly sets the benchmark in this field, those who have already been through the NHS assessment process for NHS funded care, will know, that in practice, it is not quite that simple.

It is vital to remember that each case has to be looked at on its own merits. No two cases are going to be exactly alike.

This is the critical bit. The National Framework indicates that a full assessment for CHC Funding is to be carried out by a Multi-Disciplinary Team using the Decision Support Tool. NHS Continuing Healthcare is not just about the scores allocated to each Care Domain recorded in the Decision Support Tool (and hence direct comparison to Coughlan), but the overall totality of needs, taking a holistic approach, and looking at the interaction of those needs in conjunction with the 4 key indicators (Nature, Complexity, Intensity and Unpredictability).

Therefore, although Pamela Coughlan secured NHS funding based on her particular care needs, it is suggested by some, that if her needs were to be assessed against the modern National Framework, she would be found ineligible for NHS funding.

That said, the Court of Appeal decision in Coughlan is still as relevant today as it was in 1999.  It enshrines in law the principle that if your relative has a ‘primary health need’, then it is the responsibility of the NHS to pay for every penny of their care needs. But how they achieve that funding is determined by the assessment processes set out in the National Framework.

The National Framework does not replace the Coughlan ruling, but embodies Coughlan, such that its principles form the core essence of the National Framework.

The National Framework is guidance, whereas Coughlan is law.

Remember: An assessment for CHC Funding should always take place before any discussion over finances and paying for care, and before any Local Authority assessment (means-tested). Read our blog: So will you be self-funding?

You can read more about the Coughlan Judgment in Annex B of the National Framework (pages 152/153).

In summary:

Whether the NHS or the Local Authority fund your relative’s care package, the decision should be based on healthcare needs and not financial considerations as to who should pay for care.  If your relative has a primary health need, then following the Coughlan Judgment, their care package should be funded in full by the NHS, and they should not be asked to contribute a penny. Coughlan is relevant and that is the approach you need to take.

Please share your views and leave a comment here…

For more information read our helpful blogs:

New to NHS Continuing Healthcare Funding? Here’s a guide to the basics you need to know

16 useful tips you need to know at the beginning of your CHC journey

Apply for NHS Continuing Healthcare Funding if your relative has a ‘primary health need’…

Your mum has ‘social’ needs, so she won’t get CHC funding…

50 Comments

  1. Philip Knowles 1 month ago

    Is the Coughlan test not now incorporated into statute law? I refer to Regulation 21(7) of the NHS Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) Regulations 2012 (SI 2012 No 2996). This provides that…

    “In deciding whether a person has a primary health need in accordance with sub-paragraph (5)(b) a relevant body must consider whether the nursing or other health services required by that person are :

    (a) where that person is, or is to be, accommodated in relevant premises, more than incidental or ancillary to the provision of accommodation which a social services authority is, or would be but for a person’s means, under a duty to provide, or

    (b) of a nature beyond which a social services authority, whose primary responsibility is to provide social services, could be expected to provide

    and, if it decides that the nursing or other health services required do, when considered in their totality, fall within sub-paragraph (a) or (b) it must decide that the person has a primary health need.”

    Unless the Regulation has been amended – and I can find no trace of any such amendment – Parliament intended that paragraphs (a) and (b) above should be applied disjunctively, i.e. only one or the other test needs to be satisfied to establish a primary health need. Paragraph 58 of the National Framework, however, treats the test for a primary health need as conjunctive, asserting that both limbs must be satisfied. But that is not what Regulation 21(7) says. My wife and I are currently at the independent review stage seeking CHC for my (now late) father in law. None of the NHS personnel with whom we have dealt thus far seems to have heard of this Regulation or, if they have, they are studiously ignoring it. Indeed, NHS England quite clearly states in its independent review guidance that the panel does not intend to deal with legal arguments. The Regulations surely take precedence over the National Framework, yet the NHS appears ready to ignore the law as laid down by Parliament and even refuses to engage with representations on that issue.

    Am I barking up the wrong tree, or is there a difference here between statute law and the National Framework?

    • Andy 1 month ago

      I can’t help on the question of statue law, but my understanding is that the National Framework is just guidance and Case Law takes precedent. When I researched Coughlan I understood it to mean you only need to meet one of those two conditions, but the National Framework is rather ambiguous at best, or seems to imply that you need to meet both.

      • Care to be Different 1 month ago

        That is correct Andy. Kind regards

    • Andy 1 month ago

      I just looked up the regulation you refer to and it is interesting that it uses the word ‘or’ instead of ‘and’ that is in the National Framework. If I was you, I would take a screen grab and provide it as part of your evidence.

      • Philip Knowles 1 month ago

        Thanks Andy. Very much appreciated. I’ve downloaded a copy of the Regs from the statute law website operated by the Government, so will use that at the hearing. Insofar as para 58 of the National Framework suggests that both criteria need to be met, that is, in my view, wrong in law. However, the guidance issued by NHS England on the conduct of these “independent” review hearings states that they will not hear any legal argument, which strikes me as extraordinary. Doesn’t Professor Luke Clements state that the question whether a person has a primary health need is ultimately a matter of law? If we’re turned down, it will have to be an issue for the Ombudsman, I guess. Failing that, it’s judicial review, although the cost of that is prohibitive.

        • Paul2 3 weeks ago

          Hi Philip,
          I am almost at the end of my PHSO complaints regarding the ineffective IRP review process for my parent. Yes, the IRP panel will not consider maladministration or points of law. Even when the the Couglan and Grogan law cases are definedand referenced within the Nation Framework.
          I just received a final PHSO review of my compliant for the IRP handling and decision, and they didn’t even reference the law cases that I stated was not used by the IRP panel. I would also conclude that the remit of the PHSO to provide independence is flawed and a waste of taxpayers money.
          My next option is now to write a “letter of final action” to the CCG , with the intention of going to court, stating that the CCG had committed Fraud( but not professional misconduct). The taking of money without due process from our parent. I worked out the money they took so I will use the small claims court to retrieve the money back that they had overpaid for their EMI care home fees.

          In my parent’s case, I maintain that the day they entered the locked down 24×7 EMI care home ( mental ward), and against their will, they were above the “legal responsibility of care” that can be provided by social services. It is certainly not a ” incidental or ancillary to the provision of accommodation” . It will take a lot of effort to prepare, but once they hear all the evidence before and after within the EMI care system, it will be worth it to present this in front of a court to decide this important failure within our EMI care system.

          • Geoffrey Fergusson 3 weeks ago

            Interested to hear your comment and well done. I would love to know the outcome of your money claim against the NHS. I’ve just had my IRP decision (ineligible). They did not answer my written questions regarding the law which states the NHS is responsible for my funding. The CCG also would not answer the points of law. I’m not surprised by the Ombudsman review. I think you are doing the best thing other than publicise the fact that the NHS are acting unlawfully and other parties are complicit in this.

          • Philip Knowles 3 weeks ago

            Thanks Paul. At the IRP hearing this week, my wife and I did argue that, as my father in law was discharged directly from hospital into an EMI unit – without the family being given any real choice – it followed that he required care which was more than incidental or ancillary to the provision of the accommodation and certainly well beyond what social services could be expected to provide. We now await the outcome. If we’re unsuccessful, the Ombudsman will be our next step before we consider what, if any, legal action we take. Good luck with the county court proceedings. I think you may find that an allegation of fraud will have to be supported by some pretty cogent evidence of bad faith or misconduct. We all know that the whole construct of the National Framework is designed to protect the NHS budget by making it as difficult as possible for people to receive the free healthcare to which the law entitles them, but proving it is, unfortunately, quite another matter.

          • Paul2 3 weeks ago

            Hi there Phillip Knowles,
            Sorry to hear about your father-in-law to go into EMI. Some suggestion just for starters when someone has to go into EMI and my experience which was too late for me. Hope this helps:-

            Remember the two care systems; “NHS services” (being free) and “community care services” (you pay). So, ask them if it is classed as “community” care then why is that person locked away from society(community) 24×7, with loss of their freedom, within a EMI section ward , and that is so special for their nursing and health care needs to warrant this level of security?

            Ask the LA to confirm how their human rights were considered and not breached for entry into a locked down 24×7 section.Were is the medical evidence, GP, consultant’s report to action this against their will? Refer them to mental section 117 for two doctors to section them, ask why they cannot be considered.Keep pushing. If they are sectioned under 117 then care is free.

            Do not pay a penny – Whilst “NHS funding disputes” are ongoing you do not have to pay a penny until fully resolved.Part of the process. Also see the youtube video https://www.youtube.com/watch?v=FTEsCg0AnTI
            By Ian Perkins for inspiration.

            EMI care implies a Deprivation of liberty – Requires a MCA DOLs assessment needs to be undertaken. Lost of freedom to the patient.
            Also the National Framework Capacity section – item 74
            “Where the individual concerned lacks mental capacity, decisions about their accommodation must be made in compliance with the Mental Capacity Act 2005. An Independent Mental Capacity Act Advocate (IMCA) must be appointed where the statutory requirements are met.”
            and ,
            “Best Interest Decisions” section item 77:-
            Where the “Best interest’s decision” should be recorded” – This does not exist. It was never undertaken or explained to the family the processes required in placing our mother in a locked down 24×7 EMI system, against her will. A breach of her freedom of rights.

            If you are paying for EMI care , then write to the care home manager to transfer them to the residential floor as you are now a paying customer you want the best. Get in writing why not and what is special about their nursing care needs not to move them. Keep pushing for the real reasons in writing.

            Get handover documentation from LA to CCG before any CHC assessment takes place ( especially behind your back)

            If they are in LA social services care, then make sure you get their formal handover documents over to CCG, to allow any CHC assessment to go ahead. Ensure you are invited to sit in. Ensure you ask the question are the LA now over their “legal responsibility of care” to look after them within an EMI ward.Refer them to the standing orders, the law points at the meetings. If they are then any NF DST tools is immaterial. Ask then are the recording of approx 39 care home records that will be required for the patient’s day to day tracking and monitoring, now be above the legal responsibility of care by the LA.
            Check out the “Code of Practice” for Social Care Workers, and ensure they are following it in every detail.

            Get the LA social care review for them – is their FACS( Fair access to Care Services ) rating now CRITICAL- a danger to themselves and others around them.
            Refer to “Prioritising eligibility for care and support – Guide 33”
            Table 1: FACS bandings and eligibility criteria for the individual

            Ask the EMI care home , as to how they are intending to stop violence /incidents on my family member and Safeguarding? Don’t you think safeguarding is above the level of care and skillset for LA to provide.

            Check the EMI care home “Residents Handling Assessment” Form on their first entry day- with a question ” Does resident understand the reason for handling?” see the answer is Y or N

          • Paul2 3 weeks ago

            Phillip,
            Forgot to mention. I think the reason why we had partial success at our second IRP paen ( only 13 years late, from the date our mother went into EMI !), was we had solictor representation at the 1st IRP review – as our mother was on pension credits they could represent her free. The second IRP was on a no win no fee basis, so the Solicitors knew of a likelyhood of winning ( wll partial win).
            Remember also:
            That a well managed need is still a need – Use the “OTHER” domain score, to put all the other information in, even maladministration. Even the reference to law, standing orders. Also what the “criterias” section of the IRP panel’s remit is. Normally at the end on their report/review. My IRP did not mention it even when I told the PHSO as an invalid IRP assessment. Ensure it mentions the Coughlan law points for Criteria. You should see a “Criteria” reference to the National Framework. I ensured that all my points on the law were minutes at the IRP, even though they panel stated that “it was not relevant today”. So the IRPs personnel are not being trained correctly, or told to specifically ignore the law points as detailed within the NF.

            Also further to nursing care with EMI: – How can social services provide a level of care at all meal times to ensure patients are eating and swallowing correctly and not chocking, Also not “pouching” food, to chock later on. How can social services ensure their fluid level intake is also being monitored at meal times and during the day. All the necessary to to day monitoring and small nursing activities that show the “sum is indeed greater than the parts”, for preserving life with constant 24×7 nursing care.

          • Philip Knowles 2 weeks ago

            Paul – thank you very much indeed for taking the trouble to provide such a great deal of useful information. We now await the result of our IRP hearing. I would suggest that the NHS’s refusal to engage with representations on matters of law can properly be the subject of a complaint to the Ombudsman. I expect that’s where we’ll be going next if we’re turned down.

    • Deb 2 weeks ago

      Worrying development here in NW with some CCGs holding ‘reviews’ until they get the answers they want and can downgrade domains. They’re not waiting for clinical or medical reports or even opinion and those making the decisions aren’t qualified to do so.

  2. Jim 4 months ago

    The NHS and local authorities don’t (or perhaps choose not to) understand the incidental or ancillary test and, as a consequence, set the bar far too high .

    The legal test for economic transactions is “…. a service is ancillary to a principal service if it does not constitute for customers an aim in itself, but a means of better enjoying the principal service supplied…”. The DST scores should inform this test. So its a matter of (1) translating these scores into the required nursing and/or healthcare services and (2) to determine whether those services are –
    (a) a means of “better enjoying” one or more of the elements of social care – para.51 of National Framework – and which puts them under the Care Act 2014; or
    b) “constitutes an aim in itself” and is so separate from (and has nothing to do with) any other service. The services fall under the S3 NHS Act 2006. Where a person requires nursing and/or other healthcare services which cannot be provided to the person in his/her own home but in “other accommodation” (S3(b) NHS Act 2006) – care home – then, in reality, the accommodation services are a means of “better enjoying” – or facilitating – the principal service – this being the nursing services (S3(c)) and/or other healthcare services (S3(e)) of the Act.

  3. David Gallone 4 months ago

    I do not entirely agree with this article by Care to be different. Autonomic Dysreflexia is a diagnosis of a condition caused by physical injury. I have read a transcript of the Coughlan case and this was never mentioned by the judges. The likely hood for this is that Continuing Health care is not based on a diagnosis of a condition but on the need for care. A quality quantity decision for a condition that does not have to be complex nor unpredictable. So if an elderly person suffers from severe constipation and is unable to excrete their stools because they become impacted and they do not have the strength to do so as a healthy individual does or suffers from retention. This in terms of level of care required and symptoms experienced is similar to Pamela Coughlan’s condition of Autonomic Dysreflexia but may be due to the consequences of stroke or immobility this can also lead to sepsis and be fatal or cause another stroke. Pamela Coughlan wrote a letter of declaration of what her daily needs were and she was judged to need care of a wholly different kind and well beyond the level of care that social services can legally provide. Pam’s signed letter of the 17th of October 2000 listing her daily care needs is to be found on http://www.nhscare.info the website in which she collaborates to campagne for our legal right to continuing health care. The letter is in the link for “advice to solicitors” and it`s called PAMSDAY.pdf. There is also a video of Pam getting arround in her wheel chair. May God bless her in the work she has done and is still doing to help us all in spite of her condition. The secretary of state has deliberately introduced complexity to the system to fraudulently deny us our legal rights. The National Framework is still incorrrect today and does not follow case Law. LAW HAS PRECEDENCE OVER GUIDANCE. Successive governments are continually kicking the can down the street and nobody has done anything over this issue in almost 20 years. Never give up and get specialist legal help if you need it. Good luck

  4. Andy 4 months ago

    Well I got the completed DST in the post yesterday with confirmation that my mother’s funding was being cut. I feel like I have been mugged. Their whole argument for non eligibility centres around what is a health need and what is a care need, together with the question of who is administering to those needs. My mother needs maybe 30 interventions over a 24 hour period to administer her substantial health needs (they scored 1 Severe, 4 High, 5 Moderate in the domains), but somehow they class them as care needs. Page 17 of the National Framework, section ‘Health need and social care need’ couldn’t be clearer on the difference, but they choose to ignore it.

    • M.Wetherall 4 months ago

      Hi Andy,
      I’m sorry to hear the news. With one severe and 4 highs as well as the 5 moderates it still falls with the indicative guidelines as to the threshold set. The DST assets a clear recommendation of eligibility to NHS CHC where there is one domain recorded as Severe, together with needs in a number of other domains or a number of domains with high and or moderate needs. This indicates a PHN. (Please CTBD correct me if I am wrong?)
      I’ve gone through exactly the same circumstances, even to the point of one domain being left unawarded throughout the entire process right up to IRP. I am just working on this area presently! Even at the Individual Review Challenge they wriggled out of not making the award in the empty domain, by saying it could not be agreed and that it did not matter! ( i was absolutely livid with them using terms like it doesn’t matter! It does matter! This is my relative!) They said the outcome of the assessment was to use the four key indicators.
      Andy, I would definitely appeal the decision. You have a good platform to move it forward with your mum already being in receipt of funding. Do your homework on the 4 Key Indicators as this seems to be the focus. Compare the latest DST with the previous one and highlight any changes. I guess there wont be many. If there is a slight change this will probably be due to your mum’s needs being successfully managed (doesn’t mean that the needs aren’t there!)
      Remain focused and challenge them all they way! The rely on folks giving up, so they can protect the budget!

      • Andy 4 months ago

        Hi M.Wetherall, I think the section in the National Framework on domain scores, is worded in such a way that they have some wriggle room. My experience is that after spending a lot of time scoring each domain at the MDT, they then pretty much ignore the scores given.

        The previous DST also found her ineligible (unfairly in my view), but a week later she had a major heart attack and I somehow managed to persuade her GP to raise a fast track application, which they promptly rejected, even though the National Framework says they cannot unless for very special circumstances. I then had to fight for them to reconsider and was very surprised when they finally granted fast track funding.

        So it is a constant battle.

        • M.Wetherall 4 months ago

          Hi Andy, it is a constant fight. Your case is so familiar to me. We had same set of circumstances with my late father being Fast tracked because he rapidly deteriorated with bed sores/significant weight loss/immobility etc etc and all in this in a assessment hospital bed!!! The CHC tried to deny funding just as they did in your case but like you I protested and fought until they backed down.
          It has been a long road to get to IRP but I have just posted on the latest article about IRP and hope that it will help you to keep fighting for what your mum is entitled to.
          Having been fast tracked your mum has by virtue already been identified as having a Primary Health Need. To withdraw that without a robust rationale respecting the NF for managed needs is an abuse of those regulations.
          All I can say is keep working on your case and good luck.

          • Andy 4 months ago

            Hi, I’ve raised a complaint to the CCG’s Chief Officer and got the Cambridge MP to write a letter asking they take my complaint seriously. I doubt it will make any difference, but it is worth a try.

    • Deb 4 months ago

      Hello Andy You must appeal. Unfortunately 1 Severe category isn’t enough but 4 high and 5 moderate with 30 interventions in a 24 hour period should be, although be prepared for it to be suggested as ‘predictable’.

      • Andy 4 months ago

        Hi Deb, Yes I will appeal, but I expect to be turned down at the Local level. Hopefully things will be different when I finally reach the IRP.

  5. Andy 4 months ago

    Yesterday I attended an MDT for my mother and their recommendation will be that she is not eligible. They will cut her funding that I previously fought hard for via the fast track after she had a heart attack (they tried to reject the fast track too). At the MDT they scored her as having 1 Severe, 4 High and 3 Medium needs, while I scored her far higher. They are supposed to be expert but were very confused by the difference between a Care need and a Health need and the reasons for their decision are easily contradicted by clauses in the National Framework. When I see them clearly violating both the stat guidance and case law in reaching a flawed eligibility decision, is there anything I can do other than just take it on the chin? Am I forced to accept paying Care costs again and lodging an appeal which goes to them to reject after many months, or are they any other options?

    An MDT feels like a kangaroo court where I am the defendant and the CCG is prosecutor is also the judge. I don’t know whether an Independent review is any fairer, but I have no faith in getting any sort of justice at the MDT, Local Resolution Meeting or Local Resolution Panel. You have to go through a lot before you can get to the independent review stage.

    The ‘Primary Health need’ test looks like a low bar, as very few people enter a Care home mainly for the accommodation with health needs a secondary concern, but CCGs seem to set their own bar at an arbitrarily high level that has nothing to do with the Primary health need test – yet pretend to adhere to it.

    • Care to be Different 4 months ago

      You are correct in all that you say but don’t give up! Please do get in touch if you’d like to chat it through with us. We do offer 1:1 support. Kind regards 0161 979 0430.

    • M.Wetherall 4 months ago

      Hi Andy, don’t give up if you honestly believe your mum has a PHN. We have been through exactly the same since April 2016. We have fought a hard battle with small victories along the way, but the campaign still goes on!
      This week I have received the result of the IRP held earlier this year. They have found the original decision was UNSOUND!
      My late father was found ineligible for CHC in August 2016……6 weeks later his condition had deteriorated and he was then funded through the Fast Track stream of funding for CHC……this being withdrawn 3 months later!.
      The IRP have found that my late father was and this is their words ” Therefore the IRP decided that during the period covered by the DST completed on 2nd August 2016, Mr ****** WAS ELIGIBLE for 100% funded NHS Continuing Healthcare.”
      The stress has been horrendous but to now be told that dad should have been funded from the very beginning just adds weight to the case we are pursuing.
      It’s not the end for us as the fight to recover dad’s fees will go on, but all I can say to you and everyone else is READ READ READ the framework! Stick to it religiously.
      Keep comprehensive notes of everything!
      I can not begin to tell you how many hours I have spent on fighting this, but I did it for dad!
      He had a PHN. He suffered terribly in the end with Parkinson’s disease and advanced dementia. I presented the case to the panel at the IRP and presented them with a document which I focused heavily on the Key Indicators. Interestingly the IRP didn’t alter the scores of the domains but completed the domain that had been left unscored (P&E) throughout the process. The focus was the KI’s which the assessors had failed to do as comprehensively as I did.
      The IRP criticised the quality of the assessment process and quote ” The local resolution panel had opportunity to put matters right but failed to do so”.
      So I’m now waiting to see what the CCG have to say about it.
      They will be putting me through another appeal no doubt, but this time I’m in a better position with the decision from the IRP.
      It shouldn’t be like this. I should not have spent the last two years of dad’s life fighting for what the IRP have now concluded was his right!!!!
      Andy, take a break for a few weeks and come back energised and focused on the next stage of appeal. The folks on this site will help anyway they can. It has been my saviour when I’ve felt overwhelmed. Thanks CTBD !

      • Elesnor 4 months ago

        Well done, don’t let it destroy you though. It destroyed me and I lost the war, cos that’s what it was. Mum had no local social worker no one knew her, the care home were 100% behind The council who took me to court.

      • Andy 4 months ago

        It is reassuring that the IRP can be independent and produce the right result. Congratulation on your latest triumph in your long fight.

        • M.Wetherall 4 months ago

          Thank you Andy! I just wanted to let you know that it’s worth fighting on! It is by far the biggest challenge I have taken on. I sought the help of a solicitor in the early days of the appeal but quickly realised that I knew more about dad ‘s case and the NF/MDT/DST/FTT/IRP and due process than the solicitor who was being paid to present an appeal. I quickly dispensed with the solicitor!
          Andy, if you are certain that your mum has a PHN then you can do it yourself. Much the same as Probate and Power of Attorney…..you don’t always need a solicitor if you are confident enough to tackle paperwork and have the time! Go through the domains and document everything that you have. Don’t forget to get all the reports from your mum’s consultants and specialists treating her. Once you have done that and and you have scored highly (you don’t necessarily need Priority or Severes but this will help) then focus on the 4 Key Indicators…..they are by far the most important areas that determine a Primary Health Care Need. Check out Professor Luke Clements too! His work in the area of CHC is very helpful.
          I’m no where near finished in this fight because I know the CCG are going to come back to me and offer me yet another appeal for the period that they withdrew my late father’s funding after the FTT. I have put myself in a better position with the result of the IRP but I have a long way to go, but I’m not giving up!
          It’s almost like a game of chess now!
          Such a terrible thing to say, when we are talking about our loved ones!
          Sadly for us dad died during the process and I had a cardiac arrest ( the NHS were absolutely fantastic for me and I can’t praise them enough for the care I received. I’ve been contacted so many times by news agencies wanting to publish my story but I’m holding this Ace Card!) On the other hand, the care my father received at the end of his life was disgraceful! The NHS should hold their heads in shame at the way in which our elderly are being treated and the way in which they are unlawfully making them pay for care which in many many cases should be paid for by the NHS.
          So Andy, don’t give up! That’s what CHC/CCG’s want you to do! So many are operating systems which are in direct conflict of the NF and need to be challenged and held to account.
          They investigate themselves, quite often using the same people who have been involved in the process throughout. Quite how this is independent and transparent I do not know! So be careful! Know who you are speaking to…..record times dates and of course the all important Name and status of that individual. They will manipulate to gain the advantage!
          I hope I have helped you focus.
          Good Luck!

          • M.Wetherall 4 months ago

            Thank you for your kind comments Elesnor! I’m sorry to hear your story. It is a war! I feel like I’m playing a game of chess in the life of my late father. How awful is that! A game!
            Families up and down the country should not be going through this, but until the Government/Media focus on the injustice of CHC and the operating systems of individual CCG’s it will continue.
            Good Luck and best wishes for your future.

  6. James Allison 4 months ago

    Shame we have had no response from Teresa Fletcher who started this discussion.
    I do hope that she has taken on the advice of those who offered such good responses.

    I pray that she has and that her son was not forced to leave Buer Avenue at 6.00pm

    • Care to be Different 4 months ago

      We have replied to her direct. Kind regards

  7. James Allison 4 months ago

    WELCOME.
    Welcome to this special edition of News from the Ombudsman.

    Today we have launched our annual review of local government complaints for 2018-19.

    The report shows we registered 16,899 complaints and enquiries over the period, more than a third of which were about Children and Education Services, and Adult Social Care.

    Over the past year we have upheld 58% of the cases we have investigated. When we do uphold a complaint we make recommendations on how councils can put things right. Councils accepted and put in place our recommendations in 99.4% of cases, demonstrating that the sector recognises and is willing to put things right when they go wrong.

    • Deb 4 months ago

      Unfortunately we have increasing numbers of people who feel very let down by the LGO with a clear failure to look at the whole complaint, too much reliance on the councils giving the full facts and the LGO understanding of the short-comings of social services and social workers.

  8. Debbie Wolf 4 months ago

    Has anyone else had experience of an MDT comprising of only a Social Worker and a CC nurse assessor? Whilst, I understand that this meets the minimum requirement of the guidance (ie two healthcare professional from different disciplines), health care professionals who are known to the person or are involved directly in their care are not invited to attend. Is this normal practice?

    • James Allison 4 months ago

      Can you clarify what a CC nurse assessor is. If the CC stands for County Council then the Social Worker also works for the County County. If it stands for Community Care Nurse Assessor, then they work for the NHS.

      • Care to be Different 4 months ago

        Hi James – I think it should say CHC Nurse – Continuing Healthcare nurse assessor from the Clinical Commissioning Group. Regards

    • Deb 4 months ago

      This is standard practice now and actually against the rules as neither are specialist to the persons condition illness or disability. We’ve also heard about brokers attending DST and CHC MDTs commenting on people’s clinical presentation and contributing to their categorisation. This is also against the rules. It must be challenged and the appropriate people attend the meeting. http://www.gmna.co.uk

      • Debbie 1 month ago

        Thank you. I have just received confirmation that my father does not have primary health care need and funding is being cut. This is despite the fact that his needs have increased in two domains. I will certainly challenge them on the fact that the appropriate people did not attend the meeting.

        • Care to be Different 1 month ago

          Hi Debbie – sorry to hear that. If you would like to discuss it with us please call us on 0161 979 0430 Kind regards

  9. James Allison 4 months ago

    Hello Teresa,
    I am not a solicitor, but a retired Welfare Rights Lawyer but still dealing mainly with claims and Appeals for Disability Living Allowance, Personal Independence Payment and Attendance Allowance for those over 65. I used to Work for Wigan Metro many years ago.

    In essence, in my opinion, he should have been given two months notice and a Court Order obtained because in my opinion this is an ‘eviction’ and is also a breach of your son’s rights under The Human Rights Act 198 see this link http://www.legislation.gov.uk/ukpga/1998/42/schedule/1

    You really need to see a solicitor today as soon as possible today, to obtain an injunction from a Judge against CareTech to stop his removal from Buer House. Your son could always refuse to leave, and they cannot physically throw him out, as this would be assault and you could call the Police.

  10. Sandra Mackinnon 4 months ago

    I have tried to get CHC for my mum, she has many health problems and now vascular dementia I was told that her needs were social and refused CHC but I am doing an excellent job of meeting my mums needs!! At that comment I didn’t know whether to laugh or cry!
    Why is Dementia not recognised as a terminal illness? It is a disease of the brain which is dying?
    Why do we have to fight for every little thing, it’s hard enough doing the caring without having to fight the ‘ticky box brigade ‘.

    • Meggie 4 months ago

      Hi Sandra, I couldn’t agree more. Taking care of someone is hard enough without having to fight the system. Sadly, the excellent care you are providing your mum will effectively make her care needs invisible. In my experience “health and care professionals” within the NHS and social services are completely unable to grasp the “well managed needs” principle. We cared for my Dad, who had Alzheimer’s, and neither the social worker nor the CPN, hospital doctors, etc seemed able to understand that he was only clean, properly dressed, well fed and safe because he received constant care – from us. That he would be wandering the streets at night half dressed, wandering out of the house and getting lost and distressed, overdosing on powerful psychiatric drugs or not taking them at all, wasting police time with constant 999 calls, shaking with fear because of frightening hallucinations and delusions were simply incomprehensible to these “professionals”. Without exception they described him as clean, smartly dressed and polite and could not see beyond this. I wish you well with taking care of your mum whatever you decide to do regarding CHC.

  11. Keith Hull 5 months ago

    Hi Teresa,

    It sounds like the only thing that will stop this move – beyond mass local action – will be legal action (although I am not a lawyer). I would consider contacting a law firm that is experienced in dealing with “Court of Protection” matters, since even though your Son may not lack “mental capacity” to take his own decisions, I would presume the underlying principles in your case are not dissimilar, and so should be well-known to solicitors who undertake that kind of work.

    Although I’m living in Wales, a quick internet search suggests that Messrs McCarthy Bennet Holland, who have an office in Wigan (26 Bridgeman Terrace, Wigan, WN1 1TD. Tel 01942 206060) appear to be very experienced in such principles. They should at least be able to point you to someone who can help. Why not give them a call? The initial discussion will undoubtedly be free (though do ask at the outset!), and you may get very helpful facts, information and action, from a phone call to them – regardless of your financial circumstances.

    I will check my emails throughout the day from early morning onwards, and if I can help further, I will be happy to do so.

  12. Geoffrey 5 months ago

    If the care company pulls the care then I think the NHS or Social services will have to provide the care for him where he is living and wants to live.

  13. Geoffrey Fergusson 5 months ago

    Has he got an assured tenancy ? Regardless, you could tell the NHS that If they try to move him without his consent or a court order ,which can then also be appealed against, you will have the NHS charged with assault or kidnapping. Try and get some legal advice as well. Even from Citizen Advice Bureau.

    • James Allison 4 months ago

      Hi Geoffrey,

      I agree with you 100%. They are also breaching Teresa’s son’s Human Rights. There’s a link to the Human Rights Articles on an earlier post I made. Again, an afterthought; contact the “Wigan Observer” News Editor is
      Charles Graham
      Phone: 01942 506271
      Email: charles.graham@jpimedia.co.uk

  14. CCFTV 5 months ago

    Hi Theresa

    Can you contact us Care Campaign For The Vulnerable.

  15. Elesnor 5 months ago

    Oh my God, that is terrible. Let your local paper and tv station know- it might capture their attention. You have nothing to lose. I guess a suitable lawyer could help but mega money. That’s what they bank on. Hampshire county council took me to court for payment of care home costs – which I had withheld as immediately prior to moving into secure dementia home mum had received continuing healthcare funding, the only change was the lock on the door! Anyway the paid a barrister approx £60000 to fight me, who couldn’t afford legal assistance but did have right on my side.
    Please try to stay calm – your Son needs you strong and healthy. I am so sorry

  16. Peter 5 months ago

    This is all very well, but the reality is entirely different. My late mother Betty Couch was blind in one eye, virtually blind in her “good” eye, crippled with arthritis, etc. I fought the NHS for years and ultimately went to court, lost and incurred costs.

  17. Teresa fletcher 5 months ago

    I am in absolute despair and need help. I need to publicise our story to the local community.
    My 23 year old son has Duchenne Muscular Dystrophy, hus condition is terminal. He’s been bed bound for 12 months and his life expectancy is now in Gods hands.
    He is currently living in supported care accommodation in Buer Avenue in Wigan. This is run by a company called CareTech. I have spent the best part of 12 months there as I need to be with my son. Without any actual grounds or official notifications I have been told I must leave the property by Wednesday 31st July.
    They have told my son his care will be pulled as of 6pm Wednesday. They have said an ambulance is booked to remove him from the property anytime from 2pm on Wednesday.
    This is clearly spoken by an official NHS worker.
    My son is clearly stating he doesn’t want to go into the suggested residential care home. He’s 23 not 83.
    Please can you contact me and support my son and I.

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