Flawed: NHS Continuing Healthcare Independent Review Panels

Flawed: NHS Continuing Healthcare Independent Review Panels

Flawed: NHS Continuing Healthcare Independent Review PanelsFurther insights into lack of impartiality: flawed NHS Continuing Healthcare Independent Review Panels

We were recently contacted by Peter, who previously worked as Chair of an NHS Continuing Healthcare appeal panel.

(We’ve changed his name here.)

Peter told us about a new practice by his own CCG that raises even more concerns about the fairness of NHS Continuing Healthcare appeals.

He recently had to go through the NHS Continuing Healthcare funding assessment process personally on behalf of a relative. His relative was fully funded for a long time through Continuing Healthcare, without any problem, but at the last assessment the assessor said that his relative no longer qualified.

Peter advised the CCG that he intended to appeal, and requested an NHS Continuing Healthcare Independent Review Panel (IRP) hearing.

He then received a telephone call stating that the appeal would be held locally – and he was surprised when the original assessor attended and stated that she would be handling the appeal herself. It was hardly independent. Peter wondered if the CCG hoped this would stop the family proceeding further.

The assessor stated that she had reviewed the situation and had not altered her opinion about removing funding from Peter’s relative. She also advised that it was not worth taking things any further.

Peter wrote to the Chair of the CCG expressing his concern at this ‘IRP’ not being independent. Had he not known the proper appeal procedure, it’s possible that he and the family would have had to simply accept the decision.

He received an unhelpful response, but the family was subsequently invited to a new review. This was held at the CCG’s offices and was dealt with by the manager of the original assessor. The manager discussed the case and confirmed the original decision would stand, i.e. funding would be removed.

Again, Peter suspected the CCG hoped this would stop them going any further.

However, Peter informed the manager that the family was unhappy and would continue with the appeal. His relative needed full 24-hour care at home, and now her health had deteriorated further.

An appeal of the funding decision was arranged, but this was postponed several times. The reason given was that “there was not a Chair available”.

The family wanted answers to their questions about the lack of independence in all this. They were informed that the CCG had altered its procedures and, from now on, appeals would be dealt with by an in-house member of staff – as had happened with Peter’s relative.

Unfortunately, Peter’s relative died, and he decided not to take the appeal any further. However, it left him wondering how many other families have just accepted this supposed ‘new process’ without question.

It’s not unusual for a senior member of staff to initially review the funding situation – but it’s deeply concerning that it involved the same person who carried out the actual assessment because there was a complete lack of impartiality.

On account of his background, Peter is aware that CCGs do not like appeals, as these are both costly and take up much time. It would however be interesting to know how many families are coming up against the same problem when requesting an IRP and how widespread this ‘change in procedure’ might be.

Have you been in a similar situation? Did you actually get to an NHS Continuing Healthcare Independent Review Panels outside your local area – and was the Chair independent?

We’re interested to hear whether other families have also experienced such flawed NHS Continuing Healthcare Independent Review Panels. (Please avoid mentioning any specific names of CCGs or local areas.)

Read more on NHS Continuing Healthcare Independent Review Panels

Read more on NHS Continuing Healthcare appeals

107 Comments

  1. Andrew 20 hours ago

    Does anyone know whether a GP practice in England taking on a new patient, particularly a new patient who is a British citizen that has lived abroad for a few years and has relevant medical records abroad, is obliged either under their professional codes of conduct and / or legally to obtain the new patient’s old medical records from their previous GP practice in the UK and foreign doctor?

    Thank you.

    • Paul 15 hours ago

      How long they been out of the country – NHS Legacy will hold their records if before 2013

    • Chris-G 14 hours ago

      Andrew,
      I would imagine that (having lived abroad myself), the GP would do what mine did and obtain the records from my last UK GP. We lived in a jurisdiction that made patients responsible for their own records and as such I was able to pass them to the new UK GP to fill in the gap. If not then I imagine that someone if not the person you are helping, knows a little about what health needs were treated abroad if not the entire details. Such info with approx. dates would enable a GP to add them on in some way as reference if not entirely complete records.
      If the foreign GP is known to you then perhaps they have the records, if the system there was not designed for records to be kept by the person you are helping.
      I don’t think the emphasis is on the new GP to do anything except track down records from the last UK GP…. It would appear unfair to expect them to go globe trotting as a last resort.

    • Clare 3 hours ago

      Andrew, I can’t say for certain how things are now, but 17 years ago when I returned to the UK after 25 years in Australia. I was not asked for my medical records. Neither was I asked for the extensive medical records of my profoundly disabled daughter. I gave the GP a detailed run-down on all the family’s health history, including medications and she took me entirely at my word. I don’t know if that was just a fluke or common practice. When our things were finally shipped from Australia to UK, I was able to provide some of my daughter’s records that I had kept filed, which the GP accepted willingly but it wasn’t necessary for me to do so as far as she was concerned. I don’t know if this will be at all useful to you but hope that it helps somehow!

  2. Jenine 2 weeks ago

    Hello Chris G
    Can you explain why the appeals process has to be exhausted before a right to sue Arbitration has to do ” what is says on the tin”? Sounds to me Independent Review Panel is a re-run of the local appeal not independent and the same false rubbish quoted from the Decision Support Tool. Count me out !!! If I sue what will the Courts say? If arbitration isn’t fair or reasonable then surely you cannot be bound by its decision? Also the Courts will be bound by the Coughlan decision not the National Framework. If the Continuing Healthcare is retrospective then it is a monetary claim. I do get the Local Authority (LA) argument and that it should be easier to prove care beyond LA limits but what if the LA don’t sue us? You have an ongoing debt hanging around and also our own care fees which have still not been repaid.

    • Paul 2 weeks ago

      Because it’s part of the scam – delay & misdirect is the name of the game – Duty of Candour goes out of the window with their integrity

    • Chris-G 2 weeks ago

      Jenine,
      Much of what I write here is my considered supposition but it is backed by legal experience and good knowledge of the Framework and it’s Laws. There is some logic applied to what I understand of other law too.
      Advice and a Legal Opinion can be sought via a Barrister if you have the skills to instruct them (Demonstrate The Case), yourself…. Otherwise you would need to lay everything out for a Solicitor to look at so that they can instruct the Barrister. Get a legal opinion even if you feel confident to construct the case and to take the matter to court yourself. Remember…. All judges were once Barristers. Their opinion barring an unknown reason for a better case for the defence, will indicate if grounds exist, to act.
      To answer your question…. The appeals process is a formal process and under Administrative Law any decision that has a formal appeals process cannot be challenged in a court…. Until the entire appeals process (Decision through to Ombudsman), has been exhausted. The CHC process is deliberately designed to prevent court action and to generate failure at every turn, because those failures become ammunition against any determined complainant, to a court…. The failures in appeals cloud the issues…
      The Framework divides appeals at IRP level. For example it splits the session into Appealing the Evidence of Needs and then the Procedural Methods used….. so even ‘Procedural Error’ … Law Breaking and ….. Criminality, has to undergo appeal in the same way as a challenge to the evidence of needs. This is regardless of if it appears deliberate as was the case that happened from 2010 until 2017 in my mum’s repeated assessments and appeals.
      Criminal examples can be stressed (and backed by the written Criminal Law too), in appeals but they will only act on them if you make it plain that you do not want a Magistrates Hearing at this time and then clearly link the criminal act to the Framework Breaches. Here is a good link to get you started because simply knowing the words of the Law is not sufficient……. https://www.cps.gov.uk/legal/d_to_g/fraud_act/
      It is also a way of ‘threatening’ the chair and their panel, because to have heard a criminal accusation and then fail to act on the link to the failure in procedures is tantamount to assisting the alleged offender or even to commit the act after the fact. The Chair arguably has a ‘Legal Duty’ to hear your evidence and accusations (even if they cannot act and decide upon them). A IRP Chair would likely be guilty of a criminal offence to refuse to hear accusations of criminality if it is linked to the matter in hand.
      e.g. Extremely perhaps; if you had video footage of a named CHC individual striking your loved one during an assessment…. It would be bloody foolish to ignore the criminality and so also ignore the fault within the assessment process under consideration. So, an altered DST for example, is proof of a criminal act; the item you hold is a forgery if you also hold the substantially different original. To ignore the criminality and then the failure in the process would be to condone the criminal act and that makes the Chair complicit in the criminality, (if you ever got to a Magistrates/Crown Court to prove it).
      e.g. The Framework States:-
      ‘40.2 CCG decision-making processes should not have the function of: […]
      • completing/altering DSTs […]’
      For anyone to alter a medical record is an offence. The DST forms the care plan. it is clearly a medical record. See half way down this determined FOI request with Police: https://www.whatdotheyknow.com/request/police_response_to_falsification
      For anyone to Knowingly and Dishonestly make a false representation is a criminal offence when done in a financial matter. See: http://www.legislation.gov.uk/ukpga/2006/35/contents
      To (substantially) alter a document and hide the original whilst making a replacement is criminal forgery. To do the same to your own or your employer’s financial advantage is again, Fraud and Forgery too. See: http://www.legislation.gov.uk/ukpga/1981/45
      People have tried to get decisions Judicially Reviewed and have had the Judge refuse to do so solely because they consider (with likely no experience of the process) that the appeals process is all encompassing. (The process, the Needs Evidence, The Coughlan Levels for Councils, The criminal Law, etc.)
      We know that an all encompassing process and appeals are not the case when remarks like…. ‘I cannot discuss law’. Or, ‘Criminal matters cannot be addressed here’. Or …… ‘The Coughlan case is very old and has been replaced by the Framework’…. ‘I cannot comment on whether something is criminal’….. ‘I wouldn’t know if a council top up requested of a spouse is illegal’…. And oh so many more….. Even including ‘We will continue the IRP without you if you insist on leaving now’. (Having failed to properly carry out a MDT assessment, the IRP cannot go ahead because the Law requires such; and also a legally made DST to be in existence before an IRP can actually sit legally. What they would be hearing is an illegal process without admitting their part in taking that illegality further).
      So having covered that and not explained so much more….. In my mind many years ago it became apparent that the much less well resourced and less capable council would be a better target for any court action….. Some here have even commented that the money grabbing lawyers for the council do not know the CHC process when they start action. It is also the case that ‘Coughlan’ was a claim against a Council………
      Why attack the council? (Appeal the NHS too of course).
      They do not have any appeals process that you need by law to adhere to, in regard to their acceptance of the NHS’ CHC decision. You are excluded from their decision making process.
      If it can be shown to be a faulty decision then it is a way in…..

      The NHS assessor’s and Council rep’s incorrect procedure during the MDT and subsequent Panel Phase (if any), is the key here….
      If the council accepts an incorrectly made decision then they would struggle to avoid an outcome via the court, in your favour. Judicial Review seldom demands an overturning of the decision but it is usually what happens. Or else a much more serious and expensive court action ensues that is already risky because of the JR findings of error.

      Criminal matters can be brought up by referring to them in that way whilst demonstrating that they are, (regardless of that court’s inability to rule over), actually against the rules. And very seriously so because the procedural errors represent ‘Prima Facie’ evidence of criminal acts.

      Note: Ours Council did not even have a legally and Framework required interagency CHC appeals process to dispute NHS decisions with the NHS from 2007 until 2012 and then again from 1.4.2013 until I caught them again in Early 2014. IRP records show this is true. Letters too.

      Whilst a complaint is required in regard to their wrongly accepting care needs, it is not an appeal. There is nothing requiring you to formally appeal to the council within the CHC process.
      A refusal to act in your case upon complaint allows Judicial Review of THEIR original decision to accept care needs beyond their legal remit and if you want it complicated, their refusal to act as a result of your doubtless complex and detailed complaint that is sown with examples of Civil Law, Criminal Law, Framework Rules and Court Precedents too.
      Also a JR of their exceeding of the Coughlan Limits is reasonable. Regardless of if they fund or you are self funding.
      Also JR regarding the recharging of funding (if they contribute to cost of care needs). Because they are doing that upon faulty decision making having failed to use their own appeals process in support of your loved one.

      The logic is to avoid any mention of the NHS except to state that their, (Perhaps still being appealed by you), decision has been accepted by the Council and it is the council’s decision to accept the care needs is itself faulty……

      In that last regard….. https://www.adass.org.uk/adassmedia/stories/Publications/Guidance/commentary_oct07.pdf is useful because at Page 22 onwards, there is a ‘Pen Portrait’ of Coughlan and her needs. It can be sliced up and your loved one’s care needs inserted to allow a direct comparison of your loved one’s needs.
      Because it is a creation of the Social Services Managing organisation for Adult Care Directors, It cannot really be dismissed as something that an unidentifiable someone once placed on a Blog. In that light….. Make a copy on your computer, just in case it disappears from the internet….. Things do when they become inconvenient…….

      I won’t go too much into the similar methods available to combat a civil claim for the funding to be paid to the council….. Almost everything discussed and more can be written out and sent to the council as a warning that they will be challenged and that the entire case will need to be heard regardless of any appeals processes….. Their claim will also allow you to get the NHS into a court to answer if they behaved lawfully. This si required because if it is judged that they behaved unlawfully, then how could you owe the money being claimed.

      This is also because the organisation claiming the cash, can only do so because they worked with the organisation that has failed to do things properly….. And by attacking your non payment has kicked in the door to the courts before CHC appeals have ended.

      You could argue that they cannot claim the money until the appeals have ended….. I doubt that would work because technically the money is owed and refundable if they are wrong….. However, one arguably commits a criminal offence if attempting to take money that is not one hundred percent owed…..

      You can read the ADASS report (link above) that actually suggests that any money taken under appeal …. is kept in an interest accruing account and not actually used to pay for the care. (Until I presume, such expenditure becomes lawful).
      I very much doubt (having acquired the records), that (even having refused to pay) that such would ever have occurred in my mum’s case. Ergo the money being claimed was seen as 100% theirs when in three IRP cases it was subsequently proven not to be.
      In any financial transaction, it is not for you to prove that your money is yours…. Anyone claiming it must by law be confident that it is in fact theirs to invoice and then take.
      Having a formal refunds policy makes it apparent that there is doubt as to the ownership claims made by the Councils or the refunds policy need not exist.

      Refunds policies are contrary to the criminal law which makes it an offence to retain a false credit. In short…. ; you get a bank statement showing a million extra pounds has been paid in that is not due you…… If you keep it or hide the fact let alone spend it, then you commit a criminal offence. Having a policy does not over ride criminal law….. Ergo, if an outcome involving council staff is appealed with the NHS, then to invoice and take the money would appear to be a matter of poor timing….. Even if there is an entitlement to invoice for it.

  3. Kate T 3 weeks ago

    I am currently awaiting an Independent Review Panel (IRP) for a retrospective review of Continuing Healthcare (CHC) funding for my late mother. NHS England sent a request to the CSU back in May for all documents to be sent to them. I have repeatedly e-mailed the CSU myself to ask why it still has not been done. The latest “excuse” is that the senior team member works from home! I was promised these documents 2 weeks ago. The IRP cannot be convened without any documents. What can I do?. I am extremely frustrated after 3 years of this tortuous process.

    • Chris-G 2 weeks ago

      Kate T, It is not at all unusual even in cases with living patients that NHS England send the docs with a couple of weeks to spare….. At that point I usually tell them to cancel the Independent Review Panel (IRP) and rebook it for some time later……. If these people can take so much time and get paid to delay matters as they do then I demand the right to have a similar period in which to amass data (that they haven’t sent), and to write up further representations to the IRP chair.

  4. Jenine 3 weeks ago

    Paul 3 weeks ago Reply
    The National Framework is bunkum – it’s a tool that looks like it’s the definitive rules but it’s only for the NHS to misdirect delay and confuse people – The law is what applies.

    If the IRP cannot deal with matters of law then what is the point of this arbitration when it cannot address the key case law on the primary health need principle.All we are doing is complaining about the application of the Guidelines only .The definition of arbitrator is of an impartial person being asked to make a decision to resolve a dispute.So what if this person(s )are not independent or agreed by both parties? You have not properly arbitrated? therefore you cannot be bound by it.And the decision is not final anyway as there is an option to appeal to the Ombudsman.My point in all this is, the only solution is Court action as the only impartial view you are ever going to get on this merrygo round.And further to Chris G on paying the LA debt , we were asked to pay the debt upfront ( By LA’s solicitors who incidently despite offering training on the Care Act don’t actually understand its content or having taken on the case have any knowledge of CHC matters and the law , never mind any understanding of the National Framework.)we were then asked to reclaim from the NHS.Would you pay a £10K gas bill you don’t owe and claim it back? I don’t think so….

    • Paul 3 weeks ago

      Once the IRP is complete take immediate action with a lawyer and you will win – this is instituionalised fraud – top to bottom – Govt through to CCG – I wish I was joking

      • Chris-G 3 weeks ago

        Also in this instance, if the council is involved…… Their decisions also require scrutiny. Especially if they take on the partial funding of and recharging for the care. To do such a thing when exceeding their clear legal limits is verging on criminal and is provable as civil fraud at the same time as the main action in proving care needs were beyond their legal remit.
        The way in is to challenge them in a court on the very clear grounds that care needs (in most cases) very obviously exceed those of Ms Coughlan and others in her case. (Again! The argument is with the Council not the NHS).
        That being true, they cannot have taken the Coughlan case (and the Framework requirements and the relevant parts of the Standing Rules Regulations in that regard), into account before agreeing to take on the care from the NHS.
        The intricacies and complexity of the DST in regard to needs and the assessment process almost becomes irrelevant, (except to report process failures by the Council and the outcome and to use the Needs described in the DST (and other records), as being above those of Coughlan), once this point is reached.

        • Paul 3 weeks ago

          Ha – almost all of the time the council don’t get involved after the Local Appeal which actually invalidates anything at that meeting – reason is don’t want LA exposed to patients representatives – The NHS ‘decide’ what is LA limit and are wrong 99% of the time

          • Chris-G 3 weeks ago

            Paul, Many years ago I began to explore how so many people that want a court action, could do so. The NHS process is hidebound and requires the need to appeal and ombudsman etc. Very time consuming and complex. No court action is possible until all of that is done and if it even looks (after 3+years ) that you would win then they, via the appeals process, let you get funding for another year as if you had cleanly won the appeals.
            However…… It was the social service that had a limit of care placed upon them by their own laws of inception and later the Coughlan and other cases.
            * In that regard… I consider it quicker to first complain to them that they have exceeded the limits of their legal remit. They cannot ignore an official complaint.
            * Do a subject access request of the council and chase them when they ‘forget’ that most council’s also use subcontract accountants and invoicing companies, lawyers too; all of whom are obliged to respond to the council with the data but often don’t.
            * Then complain to their ombudsman too. If it is ignored and the social do not appeal against the NHS’s decision …….
            * Then the courts are open to decide that if by accepting the care needs, (and this also applies for self funders that have been rejected by the process because their needs are not considered to be healthcare needs), that the council has broken the law by agreeing that the needs are within their legal remit to provide for…. self funders are included in this because they except for their wealth would have required a Council’s assistance and still at some point (Reduced to £23,000 assets or less), could call on them.
            * The court would hear a comparison with others such as Coughlan, or indeed your own previous funding scenario (if funding is removed)…. Because that usually shows little if any change in needs that shortly before, the council had considered to be beyond their legal remit but now do.
            * The need to go through the NHS Continuing Healthcare appeals process still remains. But positive action taken against the council might well win the day if their decision to accept the funding is theirs/the patient’s is adjuged to be beyond that remit.
            It seems to me that this is the best way to go about a pre-emptive court case, because one cannot do such against the NHS and in any case they will cloud the issue with the medical issues as opposed to the genuine level of all of the needs, social or health that is supposed to assessed as to their Nature, quantity, quality etc. .
            All the best.

          • Chris-G 3 weeks ago

            To follow up my last, Paul, You appeal to the NHS for decision they have made.
            There is no appeal procedure for the decision that the Council makes….. The decision to accept the NHS’ usually faulty decision.
            That is what should be challenged…, The council’s decision that care needs are within their legal remit.
            And because here is not a right of appeal to the council…. Complain and then prosecute.
            They have no defence within a defined process as part of the NHS Continuing Healthcare National Framework to protect against that… or so it seems to me.

          • Chris-G 3 weeks ago

            Some more logic…… Judicial Review (JR) is time constrained from the date of the original disputed action. It is difficult to even get a JR against an NHS Continuing Healthcare funding decision while including the NHS as respondents. It would be quicker and simpler to ask for JR against the council’s position in making their decision to accept the NHS’s decision, a clear copy of which you hold, because they do not have (or appear to have), the same protection (within the National Framework), in regard to answering appeals…. Their decision to accept the care needs could possibly be Judicially Reviewed in an application made very soon after the NHS’ refusal letter is received.
            This I believe, is a route that needs exploring with a Barrister.

    • Chris-G 3 weeks ago

      Jenine.
      The IRP can deal with matters of relevant law. The Standing Rules Regulations etc. for example can be used to reinforce an argument. If they (as they will) try to fob you off, then having stated that law is being broken you have to have the flexibility to demonstrate that it is also against the framework rules that they can adjudicate on.
      To explain with a single example… even using criminal law as a starting point to state that for the local appeal to have ignored the civil law that requires a Multidisciplinary Team (MDT) to consist of more than one person; and to then add that if the ignoring was deliberate then Fraud has occurred and if it was negligence then it was surely misfeasance in a public office.
      Then when such matters are brushed aside, you need to reiterate and link the matter by mentioning the lawful form and the framework description of a MDT.
      And then reiterate that to have ignored your appeal observations made in the same vein, was tantamount to Fraud or Misfeasance.
      In short you can get them to listen to the legal argument by linking it to the misuse or ignorance of framework rules.
      I don’t understand how you can pay a debt to a council ,upfront…… If money was owed and the assessment process was genuinely unlawful or seriously flawed, or even if the appeals process was incomplete, then the Council can threaten but not act…. You cannot take a council to court or the NHS either until the appeals process is exhausted. What is sauce for the goose is sauce for the gander. and local council lawyers chasing cash (without CHC knowledge and skills), eventually get it that they will lose in the court once the NHS who could as easily owe the money also in the same case, face a judge to explain how they have made a decision without following the process lawfully. How they have made the council act unlawfully. How the council has acted unlawfully when refusing to perhaps appeal on your behalf using their own procedures.
      Then of course the council loses also because they are only then able to be shown to a judge to be providing funding and care that is beyond that of Ms Coughlan’s care. (her case is a legal precedent and her needs when compared with your loved one’s would certainly be less and the Framework does clearly state that her needs are beyond the legal remit of a council to provide.

      • Paul 3 weeks ago

        Chris – As you know this is both incorrect and correct at the same time – The IRP rules state that they will not discuss the Law – However I am sure they know the law and raising the fact that to fail to award at that point would undoubtedly be unlawful is pretty wise !! All CCGs commit fraud & breaches of HRA ‘unavoidably’ on a daily basis – When they do this those staff members are committing jailable crimes

        • Chris-G 3 weeks ago

          Here’s a list for some attempt a brevity Paul:-
          Jan 2010 Three copies of Decision Support Tool (DST). 1 Handwritten: 1 Almost exact Typed Transcript: Made by Multidisciplinary Team (MDT) to FUND.
          * Primary Care Trust (Now CCG), Panel wrote own DST declining Funding.
          * They also typed their ‘rationale’ for refusal. Then over ruled themselves in pen to award TEMP’ FUNDING.
          2010 Three months review. Panel member that created false DST undertook review.
          * She used false DST as the basis and attempted throughout to lower scores that were already false.
          * Told if she did not pack it in we would take matter to the Police, She created an identical DST of the false one.
          * Her rationale stated that funding would be short lived.
          2011 Same ex Panel now assessor formed MDT and reassessed.
          * Domains argued by Social and not agreed at MDT.
          * DST sent to Panel with question marks and no recommendation but mentioned inability to agree.
          * Panel completed DST by striking out the higher ‘SEVERE’ scores that should have been the default position.
          * Panel Chair even initialled his changes. Then created his own DST to hide his changes.
          * Panel Chair wrote internal NHS accounting forms to alter existing funding. Stating ‘no dispute’ at MDT.
          * Three different DST copies were used here. 1 for Social: 1 for PANEL: 1 by Panel as sent to us.
          * Police Financial Crimes Unit. Wrote. ‘There is Prima Facie Evidence Of Forgery And Fraud.’
          * Police eventually (2 years) gave up because they did not have time for two cops to learn the National Framework.
          * Council chased our refunding. Told over and again to take us to court. They never did.
          * Council warned that they had been defrauded according to Police.
          * Social Worker investigated without seeing our evidence replied: ‘I cannot find evidence in our files’.
          * 2013: Independent Review Panel (IRP) refused to discuss Forgery/Fraud. But had to accept that it was a very risky breach of procedures.
          * IRP told that to failure to overturn this would be to become complicit in the offences ‘after the fact’.
          * IRP had to increase domains under disagreement at MDT and censured the NHS for the breaches.
          This is just one of my relatives under the regimen and for only a period of around a year. As the bottles state….. ‘Now rinse and repeat’.
          This kept up until the last in April 2017 for my mum.
          * MDT agreed funding with their first and last words of assessment.
          * Commissioning Support Unit manager altered DST and sent his version and recommendation to CCG.
          * CCG manager declined to continue funding based on falsified evidence.
          * Social Worker never got a copy of the altered DST. Was holding the original DST and agreement to fund.
          * Social refused to appeal in own case.
          * Social immediately invoiced for care.
          * Mum passed away (within days of the refusal to fund) due to inability to eat due to Alzheimer’s & aspiration
          * 1 of 4 short lines of the rationale stated ‘There is no evidence of food aspiration.’
          * DST stated several times that she had been hospitalised just days before MDT for aspiration.
          * Mum was on ‘Fast Track’ whilst being fraudulently refused CHC due to a false DST and recommendation again.

          • Paul 3 weeks ago

            It’s the Wild West – I don’t buy that NHS Continuing Healthcare (CHC) teams are ignorant of the Law – it takes little time or effort to see Pam Couglan’s level of nursing needs albeit it is deliberately ‘missed out’ of the National Framework. It is specifically mentioned in last line of AppB that her needs were “clearly of a scale beyond the scope of Local Authority”. It’s the only salient line in the thing. Virtually everyone ‘qualifies’

          • Chris-G 3 weeks ago

            I agree. But the Framework is the NHS’s (well ignored), Bible. It seeks the non existent Primary Health Need. All needs relating to the care of a sick/injured/diseased person are the responsibility of the NHS. At least the definitions state that.
            The matter of the Coughlan case was an argument with the Social Services. It is no coincidence that the assessment process is led by the NHS even though the Coughlan case established limits for Social Services. It is a deliberate attempt to make one organisation compete with the other to prevent illegal acts in decision making whilst making one (ironically; the NHS), more dominant and better resourced.

    • Chris-G 2 weeks ago

      No Jenine, I wouldn’t pay it….. We are still intermittently arguing after almost two years since my FiL died. The amount is considerably greater than 10k. We refused to pay since a lone assessor recommended to remove his funding back in April 2013. He was awaiting and putting off re-amputation of a failing leg amputation that due to infection clouding his mind (and intermittent MRSA that held up the op’), kept causing him to change his mind (without anyone telling us). Then he collapsed after the eventual re-amputation failed and they sent him home to die with two inches of thigh protruding from his exploded surgical wound. (We saw it explode when the stitches began to be taken out.). Liver cancer and general decline due to infection and the the need for repeated amputations and repairs did for him and all while his needs were adjuged by a lone assessor to have been within the legal remit of an absent social worker, to provide….. Yeah Right!…..

  5. Shirley L 1 month ago

    Hi everyone.
    Long story short I am almost 5 years into this process. Went to Independent Review Panel (IRP) last October and most of what was discussed never made the report. They very conveniently left out anything that would have been seen as favourable to my Mum’s case and when I pointed this out to the NHS England representative I was told that “the report is not verbatim”!!! I then pointed out that if the report also represented the minutes of the meeting, (which they said it did) then it should at least be an accurate account of matters discussed. My case has now been with the Ombudsman for 7 months and just heard, surprise surprise, “complaint not upheld”! As a very brief summary Multidisciplinary Team (MDT) meeting took place January 15, Mum’s weightings 2/3 Severe 3/4 High and the remainder Moderate and Low. These weightings were then lowered at a closed door meeting 6 days later, for reasons that have never been explained other than a fabrication of intimidation by myself because I dared to produce a copy of the National Framework and questioned what they were saying, especially regarding well managed needs. The original Decision Support Tool (DST) documents which I watched both the nurse assessor and Local Authority (LA) representative have (by their own written admission) been destroyed so I have had no chance of proving what the original weightings were. The IRP flagged up that the fact that the nurse assessor destroyed the original DST would not have passed an audit trail, however they have done nothing to address this issue. I wonder how many others they have done this to. The Ombudsman has also done nothing to address this. Following his draft report he invited me to let him have my comments. I sent an 11 page letter detailing failings in the process, ie the LA representative not knowledgeable regarding my mother’s needs, no coordinator assigned, weightings lowered with no explanation, and the original DST destroyed/ not kept by both members of the MDT.He has refused to comment on any of these issues. This is all apparently fine with the Ombudsman!!!
    I am now starting a further complaints procedure with them. My advice to anyone approaching IRP is to take very detailed notes and / or record the meeting, as my experience is that not everything discussed will make their report, especially if it is in your favour. The saga continues. Any pointers of how to approach the next step would be appreciated. I understand that I can request complete electronic copies of mum’s files from both the LA and CCG but am unsure how to do this.

    • Paul 1 month ago

      Shirley what is your mothers condition ? This doesn’t make any sense whatsoever – are these scores yours or theirs ? What was the Ombudsman asked to look at ?

      • Shirley L 1 month ago

        Hi Paul

        Unfortunately Mum passed away in August of last year but I have continued with the fight because I felt what the CCG had done didn’t ring true.
        Mum had late stage Alzheimer’s, heart failure, atrial fibrillation, osteoporosis, was doubly incontinent and had numerous bouts of thrush, odeoma to her legs on a regular basis.
        I attended the initial Multidisciplinary Team (MDT) together with one of Mum’s regular carers. Exactly what I have said happened. The MDT agreed weightings at that meeting albeit a difference of opinion regarding behaviour domain. Weighting all agreed otherwise . I even asked them to reiterate at the of the meeting to make sure I had it right. The next thing I know is that they held a closed door meeting 6 days later to which I was not invited, they informed my advocate the day before, but had no intention of letting me go to that meeting. I have protested at local resolution, local panel review and Independent Review Panel (IRP) to no avail. The reason the CCG said they held a closed door meeting was a total fabrication of intimidation (yes , that old chestnut!). Weightings were pretty much all lowered at that closed door meeting, some by more than two levels. No explanation given.

        I requested copies of both nurse assessor’s and LA rep copies of the Decision Support Tool I saw them both complete at the initial meeting, I know exactly what weightings Mum was awarded . However both copies were, as I said, both lost/destroyed/not kept … very convenient of course. I have subsequently got nowhere during the appeals meetings. It was flagged up at IRP but they know exactly was has gone on here as do you and I !!! IRP made recommendation that CCG keep original documents in the future. Hardly helps my Mum, and of course they will probably do exactly the same thing again.

        All of this pointed out to Ombudsman but he gave me no option other than to investigate my complaint regarding procedure in a form that just disputed domain levels and that I felt Mum’s needs were above legal remit of social services. He has of course agreed with IRP that Mum did not have a primary health need and has done nothing to investigate any failings in process. I am naturally going to challenge this.
        In light of the National Audit Office report in July almost all of the things listed in their concerns happened in our case. How are they getting away with this???? This whole scenario is a nightmare. (Hope this makes sense). I will add the IRP raised some of the weightings but they were never going to put them back up to those agreed at initial MDT for obvious reasons!

        • Paul 1 month ago

          Simply the they get away with whatever they can until their actions are assessed against the law – it’s quite honestly the Wild West – The National Framework has no legal basis and is used by CCGs as a defensive tool to avoid paying for care – have you compared your mothers position against what happened in the Pointon case ?

          • Shirley L 1 month ago

            I have come to that conclusion too Paul. Thanks for the suggestion re. Pointon case. I know of it but will give it a thorough read. . As I have said before on this website this whole scenario is a National disgrace. Huge thanks to Angela for keeping the momentum going.

          • Author
            Angela Sherman 1 month ago

            Thanks for your kind words, Shirley.

      • Dom 1 month ago

        Hi Shirley, Sorry to hear your struggle and I am not surprised by the CCG’s actions as I am experiencing what I believe to be a whole tale of potential failures with the of CCG and NHS England, by the sounds of it they have already informed/appointed their solicitors even prior to IRP meeting.

        In terms of retrieving data I would certainly advise doing a Subject Access Request (SAR) under the 1997 data protection act. its likely to be £50 for NHS and £10 for Local Authority and if they comply then you should have every document related to your mothers case. You can also request the case file under the ‘Access to Health records’ under the Access to Health Records Act 1990 which I do not believe there is a charge.

        As I said, If it was me I would issue SAR’s to both CCG and LA as they would have a deadline of 40 days to respond under the Information Commissioner’s Office (ICO) set criteria.

        You will probably find a template letter online and you may want to request all data relating to your mother but also yourself and anything relation to the claim.

        I would also advise you also look at the Freedom of Information Act (FOIR) as as long as the question you ask does falls under a question for a FOIR reasonable response, then the CCG will be obliged to respond.

        Apart from loosing the DST, ask for a copy of the ‘Evidence File’ and a ‘Needs Portrayal’ as they would had to create the DST upon the evidence they had gathered.

        Remember, the quicker you issue the SAR the quicker you will get the docs and I would also say you should telephone the ICO and get advice on the lost or destroyed data as I think it should of been held on file for at least 6 years before being destroyed. They are really service helpful and will provide you guidance.

        I hope that helps
        Best wishes
        Dom

        • Shirley L 1 month ago

          Thank you so much for responding Dom.
          I am very grateful for the advice and will act upon it ASAP. I cannot express how useful this website has been to me and it is good to know that there are people out there willing to offer help and advice. My sincere thanks to you all.

          • Author
            Angela Sherman 1 month ago

            Thank you for your kind words about the website, Shirley.

          • Paul 1 month ago

            Just keep on keeping on – Remember nursing care is free always has been and always will be unless they change the law – the national framework assessments panels are all smoke and mirrors designed to hold you back – always attack from the angle of what cannot legally be provided by the local authority and use the case law available

    • Chris-G 1 month ago

      Shirley,
      Sorry about your mum.
      However, to answer one of your questions.
      Make a ‘Subject Access’ request for her DST copies in electronic and paper form from either laptops used or the central servers upon which they were likely loaded. There are likely paper records filed too. Also ask for the minutes of the assessment meetings, if they kept a record.
      Ensure that you request explanations as to the reasons for (if) any excluding or omitting of data and an outline of what that excluded data record was about. To explain: My CCG/CSU could not format and print the original typed computer copy of the DST. Nor could they send it electronically. The second copy turned out to be opened for around 15 hours straight from the time of it being first opened (according to hidden metadata on the file). I concluded that the assessor had recreated the DST from memory to create version 2 that I was sent.
      Also request any and all references to her name and/or NHS number in both electronic and paper form. This should include emails too. Such as between managers and the social services.
      The right to this data is enshrined within the Data Protection Act. I would insist that as you are executor that you are entitled to see it. Do this same thing from the Social Services too.
      There will be a cost for each set of data and the internet will confirm the maximum charge.
      They can refuse if to do the work exceeds a certain number of hours…. So don’t let them confuse supplying her entire medical record with what you are requesting….. Keep it relative to CHC assessment matters only.
      You mentioned an advocate during your description…. If they were a trained professional then they should have been invited to the MDT meeting held 6 days after the original assessment.
      I note that the domain scores were downgraded at the second meeting. You need to discover if this was solely attended by the MDT members of the original assessment because for anyone else to be involved is a local procedure and it is not a correct procedure. The higher of disputed scores at a MDT assessment should be accepted and only if exceptional circumstances have been outlined, could anyone other than the full (original) MDT change them. For anyone else to change a MDT’s recommendation (even to lower the default raised argued scores), is to break the rules. It is potentially criminal too. Money is involved in the outcome of breaking those rules and that is Fraud.

      • Shirley L 1 month ago

        Hello Chris
        Thank you so much for your comments and suggestions . I have today received a complaint form from the ombudsman’s office customer care team, which will give me the opportunity to present any further evidence which may get them to change their decision and you have given me plenty of fuel for the fire. It is my opinion that something very untoward has gone on throughout this whole process and I was at least hoping for some fairness from the Ombudsman but it appears to be a case of same old same old so far ! I still have plenty of stamina for this and am not down and out yet. This has become a matter of principle!!!

        • Chris-G 1 month ago

          Hi Shirley L,
          If you use the form, I would suggest that you are not led by it. Use ‘see attached page (x)’, etc. and then avoid the medical conditions in favour of naming them and then breaking down the care needs (so called social too), into constituent parts. Feed in the positive observations of the ‘fake’ DST where it helps. Argue the fake (with common sense/evidence), when that helps too.

          Make as much of the procedural failures (one at a time) even if you have to keep repeating the entire law or Framework rules broken. (I use italics and bold for references within the body of the page/paragraph). This makes the case that if an action in part, is against the rules the rules must be outlined. If another part of the same action breaks the same rule, then include the exact same reference. Other failings later in the ‘appeal’ might well require exactly the same reference. (I do this because so many decision makers fail to look at appendices and enclosed references). As such the wordy document you create cannot be ignored or misunderstood. Do not be worried if it numbers dozens of pages….. If it is all relevant then a parting shot could be to mention that none of this process to decide on needs is adjudged so far to have been complex or intense etc. So why is the appeal enclosed so necessarily detailed and complex? And why is it so much more detailed than the original DST? And why were so many rules/laws broken, if understanding and correctly applying them is not complex or intense?

          • Shirley L 1 month ago

            Thank you so much Chris. That’s very helpful. It’s kind of you to spare the time to provide me with this invaluable information. It’s such a minefield!

    • Chris-G 1 month ago

      The Ombudsman has made a potentially fatal error here regarding the destruction of the original DST and council assessment copy…..
      q. Was that the copy that was altered six days later?
      q. If not then was it the copy that the decision maker used to refuse funding?
      q. If a second copy was presented to the decision maker then the decision made was not legally made because the Framework requires that the DST created at the MDT assessment (that included everyone) be used to ‘inform’ that decision. Note: You formed part of the MDT as a representative. As a non professional, your scores should have been noted even if later ignored during the private session that should have included all professionals. (Even care home professionals in my experience, get to work on the final MDT domain scores). To alter matters without their presence is an error.
      q. Was the destroyed version the originator of the copy sent to you in refusal to fund?
      q. If not then were you told a lie regarding the outcome of the assessment?
      Comment. The Framework does not allow the alteration of a DST. However, extra work can be done by the original MDT (including professional advocates too) but that work should not be to disfigure or to remove any part of the original DST because some of what is recorded is your and you apparently missing advocate’s input. If it is removed or ‘enhanced’ at some later date without your acceptance, then your words have been falsified.

      There is so much more to this.

  6. Jenine 2 months ago

    I think Chris G’s handwash scenario makes the key factors clearer. But they insist on all key factors applying, not an And or Or. Has anyone tested the belief that you cannot take to Court without going through the entire arbitration process.Surely the courts have to allow some reasonableness of upwards of 5 years. For instance for a car insurance complaint you would write to the insurer who has to reply within around 3 weeks, then arbitration if you are not happy, this IS completely independent. Court action could follow that. This whole process could take you around 3- 6 months. I know I used to work in insurance. So if we are given a date for IRP around a years time, we will test this for you, without a solicitor since we know more now than any solicitor could do. It is up to the Courts to decide whether the arbitration process is long enough. We have had enough and are at breaking point.The Local Authority still want the “money” for care and are using bully tactics despite being out of time to sue. If we spend the money paying lawyers then so be it. Then, if the case is to be heard before IRP, then I very much doubt they will want to waste thousands on lawyers, we will see.

    • Author
      Angela Sherman 2 months ago

      Keep in mind that with the 4 characteristics that are considered as part of a Continuing Healthcare assessment (Nature, Intensity, Complexity and Unpredictability), you only have to show characteristics of one of these, not all of them.

      • Andrew 2 months ago

        And the “nature, intensity, complexity and/or unpredictability” criteria overcomplicate this entire process. It was a throwaway comment made by Lord Woolf who gave the leading judgement in the leading CHC case of R. v. North and East Devon Health Authority Ex Parte Coughlan. The Court of Appeal did not rely on this criteria when they delivered their judgement.

        The actual test formulated by the Court of Appeal was what is the quantity and quality of healthcare need required by the individual? And is it lawful for those needs to be met by a local authority?

        In Coughlan it was agreed that Ms Coughlan was receiving low level, “routine” nursing care. Her health needs were at the time of the judgement “stable.” The Court of Appeal found she was eligible for CHC.

        I am not a fan of the confusing “nature, intensity, complexity, unpredictability” factors. They do overcomplicate the real issue. But I guess we have to live with it as the people who assess have to do so.

        • Paul 2 months ago

          In respect of Ms Coughlan, her needs were clearly of a scale beyond the scope of LA services……

        • Chris-G 1 month ago

          It’s unfortunate that the Decision Support Tool contains the criteria for eligibility because the Standing Rules Regulations at Sec 6 (LAW) mentions it’s mandatory use. So as far as ignoring the criteria, they are, without definition, actually (by implication only), written into law.

    • Chris-G 2 months ago

      Jenine,
      This is why I often fight with the council as well as the NHS.
      They want paying for what they have spent. Yet they did not appeal matters in their name, when asked by us, even though adequate grounds existed for them to do so. In our area, they twice failed to even have an agreed process for disputing from before 2009 until mid 2014.
      Such example for their appeal being, the clear nonsense of the NHS excluding one eligibility criteria by using another to excuse the action. (The complex but not intense rubbish).
      Or the NHS overturning the council’s recommendation and written statement that care needs were beyond their legal remit to provide for.
      This is why we never repay the council and await the court action, which although often threatened, has after many years (9), so far failed to materialise.
      We actually plead with them to take it to court because it is easier to attack from within a legal defence. (I usually include a written ‘skeleton argument’. To explain: Trying to bring a case against the council is complex. But turning up with legally assisted counterclaims and demands that the NHS are also there to prove that they do not actually owe the funding in our place, are all complexities that the council do not want.) Also. Look up your rights on the internet, to claim costs in your own right too…… Something like £19.00 per hour for your relevant time which could be argued in the circumstances that lawyers do not know this stuff, also includes much of the study time required to gain your competence in NHS CHC matters.
      The matter has to be proven by the council (and the NHS if you call them to appear too), who will have to answer before a real judge, why very obvious wrongdoing was not challenged by them and by so failing, have they spent taxpayer’s money correctly? Are they invoicing with accuracy? Does having a refunds policy in case they are wrong actually admit that they probably are? etc. etc.
      Some form of arbitration and meetings regarding the identification of only the issues in dispute will be required by the court before a hearing, at which point you will get a genuine council lawyer and not a teenaged ‘help line’ lackey, in front of you.
      They would be stupid to fail to see the stupidities of the people they represent.
      They would be equally stupid to continue to a court case, unless they genuinely discovered some major flaw in your case. At which point it would have to be made obvious to you. Thereby enabling some manoeuvring if you had merely erred in your choice of events and/or words and/or court precedents.
      In a civil court accusations against specific individuals, of criminal acts are entirely possible but will be ignored except so far as the criminal act when described, is generally a civil offence too. It is also possible to require individuals to attend if they had a role in any kind of decision making or involved in wrongly applying the Framework.
      And to agree with what you wrote: (and as I was advised by solicitors), it might well be better to spend the money defending the money, rather than simply paying on demand of the council.
      Lastly. If you do not have financial power of attorney you are generally protected when acting in a best interests capacity, so that no cost accrues to you if you act to protect the money. If costs or awards were made against you… then in fact they would be the responsibility of the person being represented (or their estate), and not the representative.
      That is how it was explained to me. But wisdom suggests that current legal advice might be sought to confirm that liability issue, at least.
      My position is to await the council court action and after any meetings to establish disputed ground, I would create my own ‘skeleton arguments’ (not forgetting the references in various annexes). Require the NHS to attend on the grounds that it is they that should have paid and not us. And wherever complicated as far as timings and court rules are concerned, I would employ legal services to carry out that part of it.
      Some of what I write is rhetorical. I do have sound reasons for it, too long to explain.
      However, it is also possible and legal to get a legal opinion regarding your defence from a barrister without doubling the cost and involving an instructing solicitor…. You would be doing the instructing and informing, if you get me?

      • Andrew 2 months ago

        Chris

        In our case the person from social services who was part of the MDT and DST we are challenging wasn’t even a qualified social worker, but a general nurse. We have found out subsequently that this individual completed a social services report on the same day that the MDT completed its assessment and the recommendation to the CCG on our Loved One, having agreed with every recommendation made by the nurse assessor. This person from social services who was part of the MDT says (having been informed by the nursing home that our Loved one has assets) that our Loved One should self fund.

        • Chris-G 1 month ago

          Andrew, if both MDT members were from the same profession (and the Council’s nurse was not trained in providing social services in accordance with their own regulations), then I might argue that it was an illegal assessment.
          The Framework requires differing medical professionals. At other points it states that ‘crucial’ face to face meeting between the social services rep and the NHS rep be undertaken at the MDT stage. It also requires council qualified staff to remove funding as part of MDT.
          No one should be deciding how you pay for care at the time of the MDT meeting. It is needs that should be being assessed.

          • Andrew 1 month ago

            Thank you Chris

    • Chris-G 2 months ago

      Jenine.
      Another problem with going to court, perhaps for Judicial Review of a bad series of decisions etc., would be that JR requires that all of an established appeal procedure be gone through before seeking legal redress.
      This has been confirmed in failed JR requests by the judges involved.
      However; as far as if, (non criminal), law breaking that is clearly expressed is denied by untrained non legal personnel, I have often wondered if that would put matters beyond the Local and Independent Appeals Process. Because they usually write that they cannot deal with matters of law, only the Framework etc.
      Especially as my experience of Independent Review Panels is that they refuse to discuss breaches of law at all, unless, (I still do both), the breaches of law are expressed as breaches of procedure.
      I use phrases such as. ‘they broke the law of ZXZ etc. Which point is entirely Judicially Reviewable according to lawyers, but as this panel will not deal with such accusations, I might point out that the problem is also a breach of QWQ etc. within the Framework. Perhaps the existence of the law is the reason for the existence of the rules that have been so cavalierly treated by the NHS/Council’.
      You can do this for almost every infraction of Framework rules because they are usually supported with civil court precedents, administrative or criminal law.
      For example: our last refusal to fund by the CCG was left unsigned and without even a name of the decision maker typed at the bottom.
      Administrative law states that it is not a legal decision simply because of that failing or desire by the CCG to avoid naming the decision maker who will be easily contactable directly, by their name and the CCG/NHS email tags, common to all of their staff.
      You get my drift…. Laws are broken and without making a threat at Independent Review Panel (IRP), you are putting the IRP chair (often a lawyer), on notice that you will eventually go to court (if they ignore you), and on some very safe grounds too.

      • Paul 2 months ago

        Never been tested – a class action / deputisation may be the remedy here – The NHS is operating outside the Law and Joe Public is denied speedy resolution by an institutionalised system of misdirection deliberate delays & outright lies.

        • Chris-G 1 month ago

          It might be possible to challenge the Framework on an academic basis. It would require Judicial Review (JR) of each and every annoyance within the Framework without actually personalising it. (Because the appeals process is supposed to allow you to do that).
          However, without the ability to demonstrate personal incidents that the Framework cannot cover or to demonstrate with cases how it is open to repeated abuse, then JR becomes impractical if not impossible. Perhaps I am wrong but this is how I see it. There again it does not take government very long to rewrite law when judges over rule their scams.

    • Andrew 2 months ago

      Jenine

      Chris is right. The National Framework is crystal clear that the nature and/or intensity and/or complexity and/or unpredictability of the needs may be sufficient to make someone eligible for CHC.
      The various criteria are NOT cumulative.

      As the National Framework says “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. The totality of the overall needs and the effects of the interaction of
      needs should be carefully considered.”

      If a clinical commissioning group is suggesting the factors must all be present, they are misapplying the Department of Health guidance, which I would hope gives a ground to appeal.

      • Paul 1 month ago

        The National Framework is bunkum – it’s a tool that looks like it’s the definitive rules but it’s only for the NHS to misdirect delay and confuse people – The law is what applies

        • Chris-G 1 month ago

          I agree Paul, I am lucky in that my earliest training was in Police work. And as such I learned to read and apply the law and comprehended that Law also has intent (that can be different to what is written) and that it alters over time due to additions/new Acts and case law created by judges.
          However, it is hard work but not impractical to use the nonsense within the DST and the Framework against them. Especially if you first comprehend the law within sec 6 of the Standing Rules Regulations. You can make accusations in appeal/assessments such as: ‘The standing rules reg’s states x and you have done z’.
          Even having perhaps made accusations of criminality, you can also state that the failing was at the very least a ‘Procedural Error’ which is required to be addressed within appeals.
          You could ask:- ‘You are not behaving lawfully. Go on explain how what you said/wrote is a lawful action?’
          Then repeat over and again the same mantra in response to their many failings. To further explain:- There are many other laws involved that are not referenced within the Framework. Altering a DST is stated to not be possible. The explanation that to do so is criminal fraud, is not referenced or even hinted at. Nor is the fact that someone has altered/corrupted data, and that is an offence under the data protection act. I would imagine that to falsify a medical record is in there too. I tend to ignore the ‘Professional Opinion’ malarkey that might give a manager a get out because that right to opinion is clearly only that of the MDT. Others can only act in clearly articulated ‘exceptional circumstances’ to return the task to the MDT for more work. The rules 91 at page 31 after all do state that ‘A decision not to accept the recommendation should never be made by one person acting unilaterally.’ This happens regularly at my CCG by virtue of a single manager making the decision that is often (and in my mum’s case too), an overturning of the MDT recommendation.
          An even handed explanation complete with the idiots guide to the criminal law included often makes even the most recalcitrant NHS manager start to wonder.

    • Jim 1 month ago

      ref Jenine’s posting. By applying a quantitive and qualitative test to the four characteristics the NHS assessors are, as Angela has indicated, getting this wrong. It all depends whether you’re looking at this from the NHS or the local authority (LA) side of the divide. In Coughlan, the Court of Appeal (CA) was looking at it from the LA side. It considered the extent that nursing and/or other healthcare services could lawfully be provided by a LA. It set out a quantitative AND qualitative test in order to determine the legal limitation of such provision. But the NHS assessors are looking at it from the opposite, NHS, side of the divide. It follows that, as both a matter of logic and in order to be Coughlan compliant, the test being applied must be a quantitative OR qualitative test. The latter determines whether the nursing services are capable of LA provision – if not then there is a primary health need. But if they are capable of LA provision then the test is a quantitative test – are the nursing services more than incidental or ancillary etc., This is reflected in the NHSCHC test set out in Regulation 21(7) of the Standing Rules – note the word “or” between (a) – the quantitative test – and (b) – the qualitative test – set out in that regulation. I suggest that you refer the assessors – or even the Chief Executive of the CCG – to it.

      You say that the LA wants “money” for care. it follows that its position must, by implication, be that any nursing and/or other healthcare services are merely incidental and ancillary to the provision of accommodation. And your position must, by implication, be that the nursing etc., services are more than incidental or ancillary to the accommodation. If the latter (and you can demonstrate this) then you’re right (as I and other contributors have done) to withhold payment. If the LA chase you again then you should, in order to put them on the back foot, set out your position in writing. This should set out the factual position – identify the nursing etc., (as against social care) services and the frequency etc., those services. In short, identify and quantify the services. Does the care plan (or anything else) evidence this? Follow the factual position by setting out both (a) the relevant primary law provision – S3 NHS Act 2006 – explaining that there is a “reasonable requirement ” (under S3) for the provision of both nursing (S3(c))and other healthcare services (S3(e)) and for the provision of “other accommodation”(S3(b)) in order to facilitate the provision of those services – NHSCHC is simply shorthand for this – and (b) the secondary legislation – the Standing Rules (SI 2012/2996) – which S3 NHSA 2006 gives effect to. Show here that the nursing etc., services are more than incidental or ancillary to the accommodation. If the person entered a care home in order to be provided with nursing and/or other healthcare services which the NHS could (or would) not provide to that person in his/her own home then the services are more than ancillary to the accommodation. This is because the provision of nursing etc., services constitutes an aim in itself than rather being a means of better enjoying the accommodation. But, if on the other hand, they are a means of better enjoying the provision of accommodation (and which includes social care) then the services are merely ancillary.

  7. John 2 months ago

    There appears to be a lot of confusion on here about the Continuing Healthcare (CHC) appeal process, with people conflating Independent Review Panel (IRP) with Local Resolution (LRM). These are completely different stages of the process and are not interchangeable.

    The fist stage is so-called “Local Resolution”, which usually involves meeting with the CCG/CSU that made the original decision of ineligibility. If the CCG/CSU deems it necessary, the case will be returned to a multidisciplinary panel (MDP) which makes a further recommendation on eligibility. The person conducting the meeting CANNOT make a decision on eligibility: this must be done by a proper Multidisciplinary Team (MDT) (e.g. two nurses of different disciplines and a Local Authority (LA) rep).

    If the outcome of this local appeal is negative, then, and only then, can you request a hearing with an IRP at NHS England. You cannot request IRP before local resolution has been exhausted. And no, it is not your inalienable right to have a hearing with NHS England (*see below).

    Due to the volume of requests, NHS England now employs a Single Chair decision-making-process to sort the wheat from the chaff; if the Single Chair believes there is no evidence of eligibility, and thus no case for the CCG to answer, no IRP will be convened and you will receive a final decision at this stage. If you remain dissatisfied, you can complain to the Ombudsman, but it will only deal with issues of incorrect process, and not clinical judgements.

    Finally, people here keep referring to “law” and “regulations” with regard to the CHC process, and even a comment above about the NHS “operating outside the law”. A word to the wise: there is no legislation for CHC, only a “framework” and “guidance” to be followed. There is no litigation involved, at any stage. There have been legal precedents set (Coughlan/Grogan/Dennison et al.) following judicial review, but this is very, very rare.

    The fact remains that hardly any CHC cases end up in court because the eligibility criteria are almost totally subjective and the risks for solicitors too high . *The lack of a proper legal framework is what allows the NHS to get away with the shoddy practices described on this forum. It can be compelled to improve, but there is no legal obligation whatsoever.

    Many law-firms have tried to get involved in CHC claims and a very small minority have been successful, largely by screening cases even more aggressively than the NHS and refusing to take on any but the strongest. A great deal more have gone bust in the process because they thought they could quote the Human Rights Act and cow the NHS into submission. Not so. To suggest the NHS is afraid of getting sued over CHC is wishful thinking.

    I don’t want to defend the NHS – I think the way patients and their families are treated during the CHC process is appalling and in some cases unforgiveable – but neither do I think riling-up grieving families with misinformation is at all helpful.

    • Author
      Angela Sherman 2 months ago

      Thank you for your comment John. I understand that you are looking to clarify elements of the process, and there may well be confusion in some quarters about this, but the article here is specifically about IRPs, and it does not seek to mislead. The NHS does indeed attempt to act outside the law when denying people healthcare that they have a right, in law, to receive – and many illustrations of that are shown in the of the thousands of comments on this – and other – blogs.

    • Paul 2 months ago

      The reason they never go to court is that until you exhaust the NHS appeal process a case wouldn’t be heard – HOWEVER once you get to the Ombudsman the law finally comes into play – They will not risk a case in court as it would set a precedent – the shoe is on the other foot…. Rather than ‘rule’ the CCGs are told to ‘look at it again’

    • Chris-G 2 months ago

      Absolutely correct Angela.
      Although some of what John wrote is correct.
      However, the CHC process is actually enshrined in law John. It is called the Standing Rules Regulations. Part 6. SEE: http://www.legislation.gov.uk/uksi/2012/2996/contents/made
      It does lay out certain aspects of what is required. The only way to use the law is to establish wrongdoing within the Framework and then compare it with what the above law and often many other related laws and court precedents states. The lawyers chasing profits you mentioned do not see beyond the DST and Framework and often have little knowledge of the criminal law whilst espousing their expertise as lawyers.
      For example a council potentially breaks Data Protection Law by obtaining financial and personal data to means test, when an appeal is underway. Because when it is won it exposes the lack of actual need to have collected and processed the data. The logic for that argument is that they never needed the data or to process it until appeals were ended. So it is a matter of timing and not an automatic immediate right in law for them to acquire the data and recharge their own costs.
      In major infractions of the Framework there is obvious misfeasance or procedural irregularities that can be represented in slightly lesser tones during local appeals, not that they will listen…. That is why I always write local appeals in great detail and include all legal infractions and references to the laws and rules broken, as if for the end user, the Independent Review Panel that is often (in my experience), chaired by a barrister who well might understand the risks if matters ever got to a court.
      The human rights legislation does in fact require independent review of decisions if requested. (This does not mean an entire panel either). That is why it is included (if messed about with by those that manage the things), in the National Framework as a right.
      External law is obvious throughout the Framework. The trouble is, the rule breakers do not even understand for example, that for anyone other than the original MDT to alter or rewrite a DST and it’s recommendation (a regular occurrence), is in fact fraud and forgery in the purely criminal sense because of the potential of monetary loss or savings to their employer.
      Using all of this external law is allowable in appeals to Independent panels because even though they will deny any ability to deal with criminal complaints, the complaints especially if couched in this form are in fact severe procedural errors. For an IRP to ignore such failures that you identify to them as crimes, or civil offences would kick the door open to actually getting into a real court and the NHS and councils do not want that because of the risk of new precedents being set that others could exploit. .

      • Paul 2 months ago

        Do NOT confuse rules and regulations with the LAW !! This is precisely what they want you to think – it’s a massive smokescreen – The Law is Coughlan Leeds Ombudsman & NAA 1948

      • Andrew 2 months ago

        Chris
        Thank you very much for this comment.
        We are very interested in what you said, particularly where you say “for anyone other than the original Multidisciplinary Team (MDT) to alter or rewrite a Decision Support Tool (DST) and it’s recommendation (a regular occurrence), is in fact fraud and forgery in the purely criminal sense.”

        We are going though a local resolution process. We are at the first stage of the process and the clinical commissioning group has got a senior nurse who was not part of the original MDT to review the papers (the nurse has not seen our loved one – they cannot do so now as out loved one died it has taken so long to get the CCG to conduct the appeal). The nurse reviewing the papers has in some instances scored our loved one lower than the MDT that was conducted!

        So we would be very interested to know on what basis we can claim that for “anyone other than the original MDT to alter or rewrite a Decision Support Tool and it’s recommendation (a regular occurrence), is in fact fraud and forgery in the purely criminal sense.” We can’t see anything in the Department of Health’s National Framework that would allow us to make such a claim, nor in the general law. Isn’t the nurse who has reviewed the papers simply putting a contrary viewpoint (even if it is wrong)?

        Thank you

        Andrew

        • Paul 2 months ago

          Always conduct your own review – then hand it to them – they will never do a proper one until they ‘have’ to – you aren’t up against the law with the CCG you are trying to get through gatekeepers – your task is to point out that tonfail to provide funding for nursing care would be fraud (as it is)

        • Chris-G 2 months ago

          Andrew. and others too…. Use your internet browser or word processor to read a Framework Copy and then use the ‘find’ function….. Type in a word, phrase or number and it will take you to the part that is relevant. You can search other documents such as the blank DST notes too. For example the 2009 Framework contains 8 references to the word ‘Exceptional’ in various causes. The 2012 does it 20 times.
          Clearly written within the Framework there has to be ‘Exceptional Circumstances’ expressed by the decision maker. (They cannot add this after their decision either.)
          ’80. Many PCTs use a panel […] Only in exceptional circumstances, and for clearly articulated reasons, should the multidisciplinary team’s recommendation not be followed. A decision not to accept the recommendation should never be made by one person acting unilaterally.’ The law has not changed so the 2009 notes would likely apply in a court. However the same thing is written within the latest Framework model at para 91 page 21.
          Nowhere does it state within the Framework the legal or criminal ramification if instructions are disobeyed and I take that to be that to include every section of the criminal and civil law as references within this would make for an even more unwieldy set of instructions….. The key here is instructions…… If I instruct you then you do it! I do not have to explain why you must do it in only that way. If you want to insert the law as a reference within appeals, as I do……. Then look up the theft act, the fraud act, and even have a look at the DPP’s boundaries and practices for prosecution in relation to those acts of Parliament. There are also pages on the internet about legal decision making and the roles and responsibilies of decision makers and of course court cases that indicate if decisions of a similar nature are properly made. If you have experience of the Data Processing Act then by all means read it for transgressions……. It is a bit of a bu@@er to comprehend it unless you have had to know it for work etc.

          • Author
            Angela Sherman 2 months ago

            How to find what you need in the Continuing Healthcare guidelines: http://caretobedifferent.co.uk/find-what-you-need-in-continuing-healthcare-guidelines/

          • Andrew 2 months ago

            Thank you.

            Andrew

          • Andrew 2 months ago

            The National Framework says at page 16 paragraph 35 “The degree to which needs fluctuate and thereby create challenges in managing them. It also relates to the level of risk to the person’s health if adequate and timely care is not provided. Someone with an unpredictable healthcare need is likely to have either a fluctuating, unstable or rapidly deteriorating condition.”

            Clinical commissioning groups focus on the first sentence. Effectively clinical commissioning groups say, for example, “your loved one is exhibiting behaviour which would not be normal or rational in the outside world if they weren’t suffering from dementia or mental illness, but because they are exhibiting this [abnormal] behaviour regularly or semi regularly and the nursing home staff are aware of it, it is now “predictable,” “routine” and can be managed by the staff. The behaviour is not “new behaviour” nor “rapidly deteriorating behaviour” but is “stable” and therefore we discount/dismiss it.”

            How do you deal with an argument like that?

          • Chris-G 2 months ago

            Andrew,
            The matter of the Eligibility Criteria that allow for CHC funding is a source of huge confusion (deliberate?) even within MDTs. Even without having got your head around what the terms mean, often one criterion is used by assessors and their managers to cancel the effects of another.
            The Eligibility Criteria are:-
            Intense…. and/or…. complex…. and/or…. unpredictable…. and/or a need for continuity of care. (Note this last, does not specifically demand that it be a clear health care requirement to meet this (almost hidden) criterion).
            The average NHS/council assessor does not appear to understand this and their decision making bosses always try to reduce needs by making statements (a true one in our case), such as ‘ The need demonstrates unpredictability but because the care required is not complex, the need is of a social care nature’. Or even more serious, ‘The need displays some complexity but as the care required has little intensity it is of no consequence’.
            Selecting individual needs and consigning them, one at a time to so called ‘social care’ is in fact the wrong way to assess…. According to two IRP chairs in our experience.
            The reason? It is the total needs social or otherwise that must be assessed and then the weight of need decided. To explain further: Food is a health need. Unarguable, the NHS records that fact.
            It is the way in which it is provided and consumed and the effects of lacks or provision that is at issue in CHC assessing. To piecemeal (whoops), ignore this need for food, if it displays any of the criteria whilst supporting and caring for say, drugs or cognition, would be bl@@dy ridiculous because all other care would soon become redundant, would it not?
            Another true one. ‘Behavioural needs are predictably unpredictable’. The same could be said of almost every car being driven that I observed today, yet for all of the potential predictability of every other driver’s unpredictable behaviour, I am still obliged to pay due care and attention to others that probably won’t be a problem and even being the worlds best driver, (yeah right, I hear you all say), I still require car insurance in case the predictable unpredictability comes home to bite me or them.
            Remember Andrew it is AND or OR and in any combination or alone, as far as the criteria for eligibility are concerned.

        • Chris-G 2 months ago

          To reply in greater detail Andrew,

          National Framework:-
          ‘PG 40 What should the role of the CCG decision-making process be?
          40.1 The role of the CCG decision-making processes, whether by use of a panel or other processes should include:

          • verifying and confirming recommendations on eligibility made by the MDT, having regard to the issues in PG41 below;

          • agreeing required actions where issues or concerns arise.

          40.2 CCG decision-making processes should not have the function of:

          • financial gatekeeping

          • completing/altering DSTs

          • overturning recommendations (although they can refer cases back to an MDT for further work in certain circumstances – see below). ‘

          And:-
          ‘PG 41 What are the ‘exceptional circumstances’ under which a CCG or panel might not accept an MDT recommendation regarding eligibility for NHS continuing healthcare?
          41.1 Eligibility recommendations must be led by the practitioners who have met and assessed the individual. Exceptional circumstances where these recommendations may not be accepted by a CCG include:

          • where the DST is not completed fully (including where there is no recommendation)
          National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care
          83
          • where there are significant gaps in evidence to support the recommendation • where there is a obvious mismatch between evidence provided and the recommendation made • where the recommendation would result in either authority acting unlawfully.
          41.2 In such cases the matter should be sent back to the MDT with a full explanation of the relevant matters to be addressed. Where there is an urgent need for care/support to be provided, the CCG (and LA where relevant) should make appropriate interim arrangements without delay. Ultimately responsibility for the eligibility decision rests with the CCG.’

          What I tend to do is when fully reading the Framework and DST notes or other documents, is to keep a note of the many different trigger words (Alter/MDT/CCG/ etc. you get what I mean), and then look them up As Angela has suggested elsewhere within this post, by using the ‘find’ function or a word processor or the internet browser being used.

          • Paul 2 months ago

            The National Framework is a carefully written smokescreen which allows the NHS to reach a conclusion and then for it to the ‘criteria’ It is worth NOTHING apart from the last line / paragraph in Appendix B – that line has stayed there despite two revisions for a very good reason – it’s the only link for that document to the LAW – People on here need to fight on this basis – The LAs need to be asked by what mechanism they use to ensure they are not illegally providing funding (at patients expense below £23k limit)…… Because they do it ALL the time – it’s actionable in a court of law as well – The simple truth is that if you get a Continuing Healthcare assessment I would say the chances are 98% plus you are eligible as a starting point

          • Andrew 2 months ago

            I think I understand Chris. Thank you.

            In our case the Multidisciplinary Team (MDT) that took place was a long long time ago; so long ago that it would be impossible for the same MDT to get together again because we assume they have moved on to other jobs, etc.

            It can be very intimidating when you are faced with a local review which has been done by a senior nurse with lots of qualifications and letters after their name, a senior nurse who never even met your loved one or saw the needs that you saw your loved one clearly had, who comes up with a needs profile that actually worse than the MDT (who still got it wrong on the day they met your loved one to complete the Decision Support Tool), and the senior nurse argues they would have scored your loved one even lower than the MDT.

            It makes you start to doubt yourself and think “Hmm! OK, are we right? Or are they right?”

          • Chris-G 2 months ago

            That’s the point Andrew. The current nurse assessor/NHS manager has downgraded needs and I doubt that on yet another decision, the decision maker has given a serious rationale for doing so. Let alone expressed ‘exceptional circumstances’ for so doing.
            The other aspect I mentioned was that far too often, the original DST does not contain sufficient detail (as is bourn out when the reviewer tries to downgrade what they read).
            That is why one should consider making a cup of tea for someone that could do it for themselves. Then look again at what might be required in the relevant case to make the same cup of tea. (i.e. my mum was downstairs and the staff and tea was upstairs by needing to go backwards and forwards and up and down or repeatedly doing so then the criteria are met for funding). Of course applying such nit picking to each and every need so poorly recorded within an average DST takes time to do and good knowledge (or imagination), to expand on what was originally written. One must bear in mind that there are no ‘needs of daily living’. There are no so called ‘social care needs’: Not at an individual level within the domains. All needs observed by you/family, recorded by yourself, the care home and the MDT require expanding on paper (later perhaps verbally too), so that they can have the eligibility criteria applied against them. That is what the NHS attempts to do in the first place…. Limit what is recorded in the DST (whilst also denying that it is the assessment) and then lose other parts to the needs of daily living nonsense, and what is left will never get past the criteria test of the Framework because there is so little of it. The council’s legal remit is all but ignored and so often overlooked because everything sent to you comes from the NHS. I might also revisit the above comment ‘whilst also denying that it is the assessment’. So often this is used to justify refusing to fund, ‘of course there is more to it than the DST’ and such remarks are made……. If that is true, then how the hell can they use the DST at a much later date (and downgrade needs) and make a decision if the original decision was reached using much more than the DST that is obviously not available or you would have been given the materiel?

          • Chris-G 2 months ago

            Sorry Andrew, to follow up on the tea thing.
            How often do you wash your hands?
            To elaborate: My mum for 18 months and longer was getting eye infections. It was her dirty sweaty fists and hands being scrubbed over and again into her eyes.
            My father recorded and reported.
            Little was done by the home. A bit of eye cleaning.
            My father reported that her eyes were sticking together.
            A GP visited.
            Creams were prescribed.
            Creams were ordered by nurses from the chemist’s.
            Creams arrived and had to be placed on the care plan.
            Staff had to understand their repeated use.
            My father had to ensure use. Remind existing staff. Inform temps.
            The need required inspection of the eye by nurses. Checking of date codes and reordering of the creams on prescription.
            Only the effect was treated and even so, at some complexity, intensity.
            What was missed was his repeated requests for staff to smell her hands.
            He would wash her hands daily with a bowl of water a disposable cloth and soap.
            Eventually staff began to use wetwipes to clean her hands without it doing very much to eliminate the musty smell. Once they were under instruction to do so.
            It was hit and miss as to if they did it.
            Staff began cleaning the other 50 patient’s hands before meals and drinks if my dad was about because the boss had given instructions to clean everyone’s hands.
            In short for 18 months to start and another three years before she died my dad had to argue for and then monitor the slap dash wet wipe hand cleaning of 50 patients including his wife.
            This can only have been proof of intensity in just the simple matter of the regular washing of hands. Something that is dismissed by the NHS as ‘needs of daily living’ until you get the MDT at assessments include the long winded version in the DST.
            When you wash your hands…. It is needs of daily living. When someone cannot do it and for others to fail or risk failing to do it, then infection breaks out and patient’s get sicker. The needs of daily living becomes nonsense because of the complexity, intensity implied by the risk of it not being done as much as meeting the apparently simple need.

    • May Gold 2 months ago

      One of the biggest problems with Continuing Healthcare (CHC) is that Care Homes are generally reluctant to see a self-funding resident (paying full care costs) admitted to NHS CHC which will often pay less than the full fees. The daily reports that Care Homes produce are often minimal and unlikely to show really accurate records which could be used in conjunction with CHC decisions.
      Not only are the Care Homes conflicted by the funding difference, but care staff are not necessarily trained to give full details which would require more time than is available and can be upsetting for family visitors.
      This can frequently make the difference between a positive decision for CHC funding and being denied CHC funding. This dilemma seems impossible to resolve.

      • Barbara 2 months ago

        I totally agree with you May, I am having a very similar problem at the moment. I have queried the nursing home daily records and staff have been disciplined, but it is obviously difficult for the home to admit their failings in order to support my appeal. Once an overall impression has been made by the assessor, it is difficult to change their views without specific details.

      • Chris-G 2 months ago

        And with no racist intent May, … (I have lived abroad), Foreign workers often employed with great results can be a bit short of adjectives when reporting incidents and needs and problems caused in caregiving. (I learned foreign language and Cyrillic alphabet sufficient to get by but struggled to vary the number of words especially in unfamiliar circumstances or situations).

      • Paul 2 months ago

        This is an issue for sure but it doesn’t make any difference with the supply of nursing care – it remains the law that it is free – the Local Authority cannot by Law provide for anything that is more than either ancillary or incidental to the accommodation.

        • Andrew 2 months ago

          Paul
          You are right. Unfortunately, however, the rules and say that in order to receive NHS Continuing Healthcare, a patient must demonstrate that they have a “primary health need.” Based on what we have experienced so far, doing so is usually entirely dependent on having the evidence (usually in paper form) to prove it. Care home notes – and indeed the notes of a patient’s general practitioner – through being too busy, poor choice of language, lack of attention to detail or conflicts of interest, can leave a lot to be desired in terms of providing sufficient evidence.

          • Paul 2 months ago

            Actually not really – The bar is VERY low – See last line of appendix B in National Framework – Pam Coughlan is deemed wholly in excess of what Local Authority can legally provide.

          • Chris-G 2 months ago

            Andrew, it is a two part process. One is to discover the Primary Health Need (PHN), the other is to ensure that needs are not beyond the legal remit of a council to provide. The first having little basis in law except for a short regulation and a very long Framework that is littered with informal descriptions of so called social care and health care. I imagine that the NHS train their Continuing Healthcare (CHC) nurses to do the PHN bit and totally avoid the matter of the Coughlan decision which is described law and the obvious fact that her needs are actually also described within the Framework as being needs beyond the legal remit of a council to provide. The assessment process is crudely designed to discover needs within the legal remit of a council to provide and ignore or minimise any health needs that are a risk to NHS budgets. They say they seek the Primary Health Need whereas they actually seek the social care need, neither of which is described in law. This why it is so important to describe all needs and treatment/care in great detail and to include/mention law and precedents where applicable and to challenge every breach of the rules on the run through the process right up to (a genuine) Independent Review Panel. What I find especially frustrating for Multidisciplinary Teams is to ask very many times at relevant moments, of course, …. ‘So is what you are saying above or below the recorded needs of Ms Coughlan?’ Then I might pick a short verbal fight when they get uppity about answering it. Similar practice can be used when making appeals. Along the lines of, ‘ The Decision Support Tool states zzzz, when that is beyond the needs of Coughlan. Is your decision correct in this individual regard?’ Then repeat as often as differences are discovered.

  8. Nicola 2 months ago

    It is a disgrace they way we allow people to treat our families who have paid in National Insurance all their lives and they are treated so badly. Do not give up any of you. Keep going. I fought and won eventually.

  9. CBS 2 months ago

    At the point of my daughter’s transition from Paediatric to Adult services, and having been told that she had been assessed as being eligible for Continuing Healthcare (CHC) (to nobody’s surprise given the complexities of her conditions), we were informed at 5.30PM on New Year’s Eve that “someone had made a mistake” and that my daughter was no longer eligible. They then claimed that crucial paperwork had been lost. We used Legal Aid to challenge them and it was at that point that the CCG and Health Authorities suddenly became helpful and reinstated her CHC eligibility. Though she had been allocated a decent budget, many health and social needs were not met and it became clear that the health authority had no intention of meeting those needs since they were creaming off several tens of thousands of pounds off her package because it was ‘underspent’ – Roll forward several years and up until last year, we were lulled into a false sense of security – it was – to us and health professionals alike – inconceivable that the CCG would seek to use carers instead of registered nurses. In 2015 my daughter’s Care manager finally said that she could have a Personal Health Budget. We were given an Independent Advocate who helped enormously – perhaps too much, for she was suddenly sacked. The Care Manager then evaded submitting that document to Panel until at the end of 2016, he returned with an ‘assistant’ who was clearly there to cut costs. They stated that the previous assessment was ‘irrelevant’ despite it being incredibly detailed and current. In the meantime, they illegally stopped payment for my daughter’s social activities until the assessment was completed. In June, I was told that the assessment was submitted – this was without the ratification of the Multidisciplinary Team (MDT). I was assured that my daughter was still eligible for NHS funding and would retain her nurses. At the same time, the health authority here ceased to exist and I was told that my daughter’s package would now be handled by a different body. Though the staff were the same, we were allocated a different Care Manager who promptly informed me that the last assessment had not been submitted. There was no documentation to be found but somehow they knew that £20,000 of my daughter’s former budget had been slashed. The Care Manager then asked to come to my house to meet me and my daughter – “just a meet and greet to see how things are done and to get to know you” – the day after she met us (seeing my daughter for all of two minutes), she sent me a newly completed assessment from which it was clear that she had used the previous day’s very casual conversation as “evidence’ to downgrade my daughter’s domain scores. It is illegal to conduct an assessment without informing the client first. She pressured me to sign it, but I made huge amendments and pointed out that she had not only made significant errors but had misquoted my daughter’s nurse. All the “mistakes” the care manager had made were with a view to downgrading my daughter’s domain scores. The other half of her MDT panel this time was an experienced registered nurse who also worked as a private care manager. Where she had scored higher than the assessor, the assessor refused to document the higher score. The assessor also engaged several professionals such as my daughter’ respiratory consultant and seizure specialist in seemingly casual conversation and used their generic, offhand, unguarded replies as “evidence” that my daughter had significantly reduced needs. I wrote a civil email to the assessor’s superior complaining of the non-compliance and received a rude and threatening email in return. I took legal advice and outlined the unlawfulness of the whole procedure to this superior and asked her to forward this to the CCG – but she refused to reply to me. I then wrote to the Chief Executive of the CCG and its Board, informing them of the unlawful approach of the assessor and received no reply whatsoever. I then sought legal advice and informed the other professionals that their words had been used as “evidence’ to place my daughter’s CHC status in jeopardy – they were outraged. Despite the CCG having been alerted to the unlawful and non-compliant approach of their assessor and the many errors that she had made in describing my daughter’s need, they upheld all of what she had written and refused to raise her domain scores to match the higher scorings that the registered nurse from the MDT had given her. My daughter was accorded CHC status and retained her nursing staff for the next twelve months (thanks to the legal advisor and the fact that her ensuing hospital admission negated all the assessor’s so-called ‘evidence’ but I have no doubts that they are seeking to chip away at her domain scores until they can deny her status. On that basis, I am seeking to legally challenge them still. The immorality and criminality of these people is breathtaking. It is my belief that the health authorities, the CCG and governmental departments flagrantly flout the law because there is no accountability – in fact, the more they do so, the more they appear to thrive in terms of promotions and remuneration. I think that there should be serious prosecutions – but one only has to look at the outcome of the Connor Sparrowhawk case to realise that the authorities seem to be above the law and that injustice in this system is rife. Apologies for the length – there is just so much I could say but I hope that this condensed version makes sense!

  10. Jeff Calderbank 2 months ago

    My Story is slightly different, My Mother in Law went into a home in July 2015, that home was in a different local authority than her home address, and at that time we thought that she would qualify for Continuing Healthcare (CHC) funding, but on the first assessment she passed the first part of it and then went to the Decision Support Tool (DST) stage, and that was the end of that attempt. At that stage she did not have a social worker attached to her, which we later understood that she should have had.
    In January 2016 we started the process again (her condition had got considerably worse) and were advised that she was ‘non priority’ to have the Checklist completed (but how they could say that without her being visited I can’t understand). As time progressed and very many attempts she was eventually assessed in September 2016 for the Checklist, which she had the required number of ‘points’ to go to the next stage, but unfortunately the next stage never happened, through a complete lack of cooperation from the authority of CCG, and she passed away in November 2016.
    I contacted the CCG and was given many excuses, but nothing was done.
    I eventually took the case to NHS England CHC in my region, and initially they seemed to be on our side, but then advised me that they couldn’t pursue the case any further as our local CCG said that my Mother in Law had never been assessed – she had, I was there!!.
    I have asked for a retrospective review of the case from our local CCG, but that does not seem to be moving forward.
    I continue to attempt to put pressure on the CCG, but just get fobbed of with excuses.
    I have also made a complaint to the Parliamentary and Health Ombudsman – but that was only submitted recently, and to-date no correspondence has been received from them.
    The CCG just seem to think that eventually I will get fed up and give in – I won’t!!
    Just wonder if anyone else has had a similar experience?

  11. Steven Hearne 2 months ago

    I went to appeal and was rejected and was then told if I appealed further to NHS England it could take at least a year and there might be a `Review of the facts on paper first`before consideration of a hearing date in my area. Before this I was trying for seven months to get an updated assessment of my Mum`s failing health in the care home, without success, and now they say that aspect will be `Retrospectively looked at` based on care home notes as my Mum passed on!

  12. Barbara 2 months ago

    We are going through a similar process at the moment. We were given Continuing Healthcare (CHC) 18 months after our initial application and following an appeal process that took 5 months and we have now been funded for 2 years. After an annual review recently we have been told that funding is to be withdrawn because my husband `no longer qualifies`.The assessor told me during the assessment (the nurse from the nursing home had to leave the meeting for a phone call) that she didn`t think we would qualify, so she had decided very early to withdraw funding.
    My husband has a progressive, degenerative, terminal illness that means he has to be hoisted for transfers, fed with pureed food and thickened liquids (to avoid choking episodes), is turned in bed, has eye problems, poor cognition, poor communication, is doubly incontinent and has medication for diabetes, vitamin B12 deficiency, thick saliva, creams for skin problems etc, etc.
    I have sent a letter to the CHC team informing them formally of my intention to appeal again, but what a waste of time and energy. I have contacted all the relevant medical staff (Consultant, GP, specialist nurse, Speech & Language Therapy (SALT) team etc) for letters of support as `evidence`. They have all expressed support but I am certain their time could be better spent. It all takes such a long time to resolve and I really want to devote my time to my husband while I can, however I will not give up.

  13. Christine 2 months ago

    Best thing is to exhaust the local dispute process as quickly as possible and get to NHS England. Local CCG’s are a waste of money. I am an angry nurse disgusted with some so called professionals who should be struck off for being in breach of their code of practice.

    • Chris-G 2 months ago

      I agree, and with that in mind I always write the first appeal in close detail including supporting evidence as if I was going to present it to some one that will listen. The chair of the Independent Review Panel. What seems to be going on here is some kind of local resolution panel…. It is not the correct procedure…. It does however seem to lend ammunition to the local CCG when it answers the IRP chair prior to them agreeing to even hear the case. We have had such a thing happen recently. NHS England declared that one assessment would be heard but not one that followed. They blamed the IRP chair but refused to name the person. The matter remains unresolved after 18 months. It relates to appeals going back to 2013. I reckon that NHS England is no longer non partisan in this anymore. They are protecting CCGs and blaming panel chairs for not hearing cases.

  14. Jennie 2 months ago

    We have requested IRP. But it seems from above this is a waste of time. We are now looking into legal action as running out of time for this option and we will go alone as we seem to know more about Continuing Healthcare (CHC) than anyone we have met in the process or at least anyone willing to be honest through this process. I work for the NHS on a ward and please don’t be put off that the attitudes in CHC are anything similar on the wards, they are not. Such good honest work is being done by staff to get people home and safely discharged.

    • Paul 2 months ago

      Absolutely not – You keep on – once the IRP has sat you have completed the procedures and then it’s up to the Ombudsman to hear your complaint and apply the law – remember nothing up until that point is in any way ‘lawful’

    • Paul 2 months ago

      Jennie – I should have said that if you have had the Local Appeal Panel and have requested the IRP you are actually ‘through the system’ They can either give you IRP or decline – Either way you can complain to the Ombudsman at which point the LAW gets applied.

  15. Chris-G 2 months ago

    Paul is correct. One is entitled to an Independent hearing regarding most administrative decisions. This is writen within the actual CHC standing rules regulations (law) because it is both UK and EU law……. It is a human right.

  16. wb 2 months ago

    Continuing Healthcare (CHC) history: Concerns relative in hospital summer 2016. In August 2016 I requested CHC – the relative was living alone and disabled. The Mental Health social worker said he was not eligible. He was discharged Oct 2016. I had made my self familiar with the National Framework (NF) for CHC and asked to see a Decision Support Tool (DST) from the hospital. Blank faces all round. A Checklist was quickly sent off by Soc Serv to the CCG. Nothing happened and I then chase up the CCG who denied the existence of said Checklist. I then got the Soc Services to send of another Checklist. This was followed up very slowly and after 14 months Joint funding was awarded. I then asked Soc Services why hey had not followed up the original Checklist which the CCG denied the existence of and asked if they had any correspondence citing the original Checklist. This they provide which proved the failings of the CCG.
    We heard no more – the joint funding which was not enough for his care and which I made up – and the Dec 2016 a review we set up (4 years later than the NF specifies) and a rationale was produced (Dec 2016) which states 24 intensive care. To date (Oct 2017) the funding is not in place and I am funding the shortfall. The panel is now setting about employing a private contractor to assess the needs. I have asked the CCG if the the needs in the Rationale are wrong and should they not keep the patient fully informed of what they are doing and why? There is something very suspicious in this service (CHC) and unlike other NHS services in our opinion. I have tried to identify the panel and asked to be present but am getting nowhere. BE VERY,VERY CAREFUL

    • Paul 2 months ago

      Get the name and position of eveey member but particularly the chairperson that will be present – VERY important – Note pretty much all they tell you contravenes the law – these people are gatekeepers

  17. Glynis Evans 2 months ago

    That is disgraceful. We are just about to go to an IRP Appeal & have a feeling that it will be exactly the same. We don’t hold out any hope with IRP panel. From what you read they may as well not have that stage of the appeals process. Seems a waste of time & money. Should perhaps just go straight to NHS ENgland stage & then Ombudsman.

    • Paul 2 months ago

      Glynis – problem is you can’t just go to NHS England as you have to complete their ‘procedures’ where are you to attend the IRP ?

      • Chris-G 2 months ago

        Nor can you bypass any of it in the courts.

    • Chris-G 2 months ago

      If it is not a genuinely Independent Chair in charge then make your position known and perhaps leave. The fault will be theirs for misleading you. Misleading someone in a financial matter or causing them expense in the same vein if it done with dishonesty is fraud.

      • Paul 2 months ago

        100% it’s both fraud AND a breach of the HRA – right to a fair hearing – they are risking their jobs if they do this although whether they realise or not is a matter for conjecture……..

  18. Martin Terry-Evans 2 months ago

    Blowing the whistle on state-sponsored organised criminals can be hazardous.

    My experiences include.
    1. Being falsely accused by so-called “safeguarding adults team” after making a complaint about Continuing Healthcare (CHC) assessors.
    2. Threatening letter from NHS solicitor when publishing identities of those flouting the law.

    • Paul 2 months ago

      Honestly I wouldn’t worry about any threats at all – The NHS is operating almost entirely outside the Law with continuing care – they wouldn’t dare take it further

    • Chris-G 2 months ago

      Martin, I just get banned from communication with them. They really don’t like a skeleton legal argument that exposes wrongdoings, along with supporting evidence.

    • Chris-G 2 months ago

      One can visit magistrates and lay an information about identifiable crimes. They will want evidence and there is a charge to do so. However….. The DPP can take over and drop matters on very dubious grounds. So even this route simply risks losing money.

    • Tarquin 2 months ago

      Join the club. I recently discovered that a safeguard had been issued because I was persistent and difficult. What I can’t understand or comprehend is the attitude of these civil servants. How do they sleep at night? They appear to be totally indifferent to people’s suffering and the pressure they put on families. Even more concerning is the attitude of MPs who appear to be to scared to do anything about it. I recently wrote to my MP and asked him what was the point of passing legislation if said legislation is ignored. In addition to this I asked him why he thought it was acceptable for a CCG to redact anything in their files which is compromising on the grounds that it would affect the relationship between the care provider and the patient.

    • Chris-G 2 months ago

      http://www.neneccg.nhs.uk/resources/uploads/files/Management%20of%20Persistent%20_%20Vexatious%20complainants%20v6%20Published%20Feb%202014.pdf

      Above is an address detailing action over Persistent and Vexatious Complainants. There are dozens of such protocols available.

      • Chris-G 2 months ago

        To follow up…. They ban you if you raise the same issue once they have responded. That of course does not allow for their often fatuous response becoming the source of further questioning or eventually complaint….. Do that and they ban you; regardless of their own failures to actually respond properly.

        In a nutshell…. They ignore your first question. Then you write again and include three or four more questions. They answer one. Then they ban you for asking why they have not answered the others.

        Even better: I have had (after 5 months of being ignored), a Social Services Director (£142,000.00 a year salary), state that ‘your questions are too hard to answer and as such are causing me and my staff some considerable distress’. He went on to ask for bullet pointed correspondence in future and for some reason he sent it to the NHS CSU involved in decision making….. They the NHS, then promptly banned me from communicating with the NHS for complying with his council based request and writing 79 bullet points of the question that he had failed to answer. Every one was relevant. He didn’t ban me, the NHS did!

        • Paul 2 months ago

          It’s another stinger in the road to stop you getting to legality as of course they will always ‘lose’ at that point. The law has never changed.

        • Paul 2 months ago

          What people think is that when they are going through the assessment procedures they are dealing with a legal process when they are absolutely not – National Framework is just a guideline for the NHS to use as a shield nothing more

  19. Paul 2 months ago

    Has happened to me – This is in direct contravention of your human rights for a start. The CCGs are repeatedly going ‘rogue’ in attempt to put you off pursuing legally if needs be – It’s a massive scam Govt NHS England The CCGs are ALL complicit

    • Chris-G 2 months ago

      Paul, back in the PCT days before 2013, my dad was threatened with an NHS Security Team, if he communicated again, when it was me doing the admin and the questioning……. We still laugh at the imagined vision of bullet proof jacketed SAS style blokes swinging in through the windows from their helicopter. The idiot that sent the letter was quickly promoted to director level within another NHS area during our complaint about her conduct……. Which to this day remains unanswered.

      • Paul 2 months ago

        Chris sorry I missed this before – Hahaha they are living in their own little world and all of them are committing fraud on a daily basis without probably realising it…..

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