CHC Funding

Well I heard this week!The panel of strangers have read the detailed report of the professionals who knew Des and decided to down grade his needs in four of the eleven fields.At the same time they acknowledge it being a progressive disease and have taken over 6 months to do this.They also pointed out that he needed care from people who were familiar with him to interpret his wishes but no suggestion as to how this was always possible,and even if I am there most of the time my days at Chemo I am absent for up to nine hours traveling into Bath and back included.

Well as many will remember he died in July so other people have been waiting for a judgement while they pondered on the deceased. Perhaps I will get the direct funding I have applied for as then I could better ensure Des got care from familiar sympathetic people not the numpties who gave him alternatives to answer and would not understand when you speak in thumbs you need one choice at a time!I have more sympathy for the numpties though than this panel who should be much more able to understand.I will respond to them as maybe I could help them to realise how important their decisions are to people not just to budgets.End of rant. Good luck anyone waiting for CHC. Pauline x

26 Replies

  • I'm flabbergasted. Numpties is a good word. Thinking of you as you continue your chemo and hope/pray for a very positive outcome. You need some good news after all you have had to endure.

    Sending you a big hug.


  • Like NannaB said just can't believe it, could think of a few good words to describe them, but I think my post will be removed . I to wish you all the luck with your chemo, sending you a big hug Yvonne xxxx

  • Oh, Pauline

    To have them come back so late with that!

    I do wish you well with the chemo.

    Hugs and waving.


    I hope you don't mind me adding this on for opthers:

    P.S. A Note for others claiming CHC - It is unlawful for the funding panel to change the scoring. (They haven't even met the patient anyway!)


    It is unlawful for the Funding Panel to turn down an application for CHC where there is a recommendation from the assessor that there should be CHC funding.

    Both of these are easily challenged with an appeal on the decision. Make a formal appeal and do not let them restyle it as a 'complaint' An appeal is a formal legal pathway a complaint is not necessarily so.

  • Kevin can you tell me where to find the legal basis for the verification panel or indeed the appeals panel not being allowed to change the scoring . If this is so then why do they have a verification panel surely the MDT recommendation should just go through without being challenged . When we put in our first assessment the scoring was changed and some of it was changed back by the appeal panel but not all of it . I am about to go to an IRP but they say they will not discuss anything based on legal case history .

  • Hi - I read it on the Care to Be Different Website. Ithink it will be in the National Framework for NHS Continuing Healthcare and NHS

    -funded Nursing Care.

    I will find it and get back to you.

    Also with regard case law... Depending on what case law you want to quote they may have saved you the trouble. The same National Framework Para 30 cites the Coughlin Case and it is laid out in Annex B. National Frameworks are effectively law as far as the NHS is concerned. "Thou shalt not ever and never breach those guidelines".

    Just in case your copy is still under your pillow

    IRP? What does the I stand for please. I still have L pates on for all of this.



  • Still beavering away here:

    The National Health Service Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing

    Rules) Regulations 2012

    Section 7 Para 8 - The CCG may not turn down a decision from a 'clinician' for Fast Track CHC. (My words)

    I wonder whether she was referring to that?

    Nope, Got It!


    Are you going in front of the review panel yourself?



  • I will take advice.I don't know how emotional I might feel and I don't want to loose my stoical label and let Des down.However every victory must make the next fight easier for someone.

    Thanks so much for the research. Pauline

  • The regulations say that funding should be backdated to jut after the checklist was done.

    They may owe you quite a bit.

    If you are taking legal advice search for a solicitor who is a specialist in CHC funding - there are a few thousand pages of regulations and laws in this area. Too much for a none specialist.

    I wish you well.


  • Hi Pauline

    I came across this today whilst looking for something else:

    From the National Service Framework - The regulations governing CHC:

    Page 83.

    "PG 43 If a person dies whilst awaiting a decision on NHS continuing healthcare eligibility, should a decision still be made in respect of eligibility for the period before their death?

    43.1 Where an individual received services prior to their death that could have been funded through NHS continuing healthcare then the eligibility decision-making process should be completed. Where no such services were provided it is not necessary to continue with the eligibility decision-making process.

    43.2 Where a decision is made that the individual would have been eligible for NHS continuing healthcare funding then payments should be made in accordance with the guidance on refunds in Annex F of this Framework."

    And Anex F is on page 132.

    It might be useful to you.

    I hope I am not being too insensitive.



  • IRP is the independent review panel who one can go to after an appeal has failed Still can't find where it says that the verification panel cannot change the scoring by the MDT .If they can't change it then every positive assessment by the MDT should go through and there would be no need for a verification panedl ..

  • Hi George

    Thanks for that - I came across it yesterday when looking for the reference. Appreciated. I haven't done much about reviews yet.

    I'm writing this in parts as I search:

    Might be useful:

    (6) If a relevant body decides that a person has a primary health need in accordance with

    paragraph (5)(b), it must also decide that that person is eligible for NHS Continuing Healthcare.t and provision of NHS Continuing Healthcare

    The National Health Service

    Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing

    Rules) Regulations 2012

    You said,"If they can't change it then every positive assessment by the MDT should go through and there would be no need for a verification panel ..." - Yes!, but they have duties to maintain consistency too and they are not a requirement.

    National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care:

    "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)."

    You might find reading paras PG41 on pp 81-82 useful.

    39.x May be useful too useful too.

    (Remember the NF is effectively law to the CCG.)

    I hope all of this helps a little.

  • Kevin..we are about to resubmit for the 4th time. We had a meeting with MDT and there are yet more changes and then off it goes. Does it now get reviewed by an assessor and if ok then goes the funding panel.

    I get confused with who is doing what..

    Thanks Barrie

  • Hi Barry

    When the Decision Support Tool is completed it is submitted to a Funding Panel who make the decision. One of the MDT who were involved with the assessment will have signed it off. They are the clinician in terms for the National Framework and they and they and the MDT together are the only people who can alter the scoring of the DST.

    Local arrangements may well involve someone who guides the clinician, but strictly speaking that is outwith the regulations and it is probably not lawful.

    The panel have to first decide that there is a qualifying Primary Health Need and then they must approve the DST for funding. They cannot alter the amount of care in the care plan or dicker of the costings of the care.

    Hope this helps



  • PS - They can send it back to the clinician for correction or completion only if it is incomplete or they find irregularities in the scoring.

  • Thanks Kevin

  • No worries - and yes its damned confusing and made worse because they don't seem to follow the regulations that well.

  • Kevin

    We spoke sometime ago about chc.

    Well have tried again and it would appear that the panel said yes but there manager overturned the decision. Our care manager is not pleased. Is the process normal where the manager goes against their team.


  • Hi Barrie - Sorry - I have been overburdened elsewhere recently. That sounds like an unlawful decision.

    I will come back to you properly tomorrow - family here today.

  • Hi Barrie

    I am so sorry to be so slow in getting back to you. My other post explains why.

    Have you read the National Se3rvice Framework for CHC?

    These are their regulations to which they must abide.

    If you have been turned down get the reasons in writing.

    Also get a copy of the CHC Checklist the worker completed at interview.

    You have a right to all of these.

    Put a letter in now saying you disagree with the outcome and that you are going to appeal the decision and will write to them in due course having taken legal advice. The last bit makes them double check everything.

    You will see in the Framework that no-one, not the panel and certainly not a manager can change the scoring or the recommendation made by the worker completing the checklist. They can only send it back for the workers re-consideration.

    The framework explains the scoring. Did they score fairly? You can challenge the scoring.

    The framework is not difficult to read. It will seem odd at first, just go through it slowly - It will make sense.

    PM me if you want more specific help.

    Even though I have been away I keep an eye on those.



  • What a farce.

    Its like " One flew over the cuckoo's nest " !!

    Good luck with your chemo,

    love and a big hug, Jean x

  • Dear Pauline, I'm dumbstruck, so will just send hugs. I hope you don't waste too much of your precious energy on this stupid bureaucracy, but take care of yourself as you deserve. Love, ec

  • It is unbelievable , the whole system is designed to stop people getting the help they need . CHC is supposed to go to those whose disability relates to their illness. The NHS spends a fortune trying to wriggle out of its responsibilities .It makes my blood boil when I read about Chief Executives on salaries of £250000. it is no wonder things are in such a mess . Go to appeal if you have the energy , you should have had that help .

  • Hmm, well, seems like whether overseas or in the states, the result remains the same - government at its best. Our tax dollars at work. I seriously need to get a government job where I can go to work, do nothing, get great benefits, awesome pay, and be ensured never to be fired, even if I royally mess things up. Just saw on the news yesterday where someone was supposed to be fired, but instead got promoted and got huge bonuses. And they wonder why things are so inefficient. It's a good think our military doesn't run as poorly as the IRS, post office, VA, etc., although it seems like it's getting there. You pointed out something great too - they sat there spending time making a decision on someone who had died, and meanwhile, others were waiting on a decision. Maybe that's their whole plan. Take enough time that everyone waiting dies, and they won't have to give funding to hardly anyone. Seems eerily like the VA. Hopefully over there, they don't actually just throw entire files into the trash "on accident."

    Sorry for the rant. The whole thing has to be like pouring salt in a wound though. You get a decision down-grading your husband's (I think it's your husband, sorry if it's not!) needs, when he was in such a bad place that he didn't survive to get the report. You may not care to do anything about it, but I might give them a call/letter/etc giving them a piece of my mind.


  • Sounds like a law suit to me...He died because he did not get the care that had been approved, except whoyou gonna sue....they probably have clauses for death prior to "completed decision" and another clause that says decision does will take two years to complete....

    Our Social Security was denied....In all my lack of experience, I thought "that was that" B is too young for SS and we will have to sell the dog to fund B's ...anything...then my son started the whole process over and bam! we were awarded all sorts of things....Then I found out it usually takes two years of denials before they accept a patient.....and then many of them are dead! To be fair I know many people who claim medicaid and or Social Security who are healthy enough to Social security , medicaid have to protect themselves I guess....Not doing a very good job as so many are (fraudulently?) on the services....

    I do hope you get compensated for the last months/years that you have put in for funding, Loppylug.


  • I was going to suggest you reapply! Glad your son did it for you. I think they count on a lot of people getting a denial and giving up. They do that with VA awards for disability as well. In any case, glad you were persistent and ended up with benefits :)


  • Yes, I say we never get anything....going from teachers pay to less than poverty...(yep that's right, we were just above the poverty line , on my paycheck...well until I paid bills, of course) makes you feel gut punched...but now that we haven't had my lofty pay in 3 years, we have settled and am able to actually live on the paltry check called disability! Anyway, as ungrateful as I may sound, (and I do complain!) I am grateful for what we get...esp. Obama Care...I;m not a democrat perse', but without this insurance we would be denied most medical care....

    And hey /God Bless the children who say, "here, let me do that, mom" whether it's convincing SS or turning on my phone.....I have a technological deficit...unfortunately Social security does not pay for that..hahha


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