Continuing Healthcare Decision Support Tool amendments: June ’16

Continuing Healthcare Decision Support Tool amendments: June ’16

Continuing Healthcare Decision Support Tool

You may have noticed that the Continuing Healthcare Decision Support Tool (DST) has recently been amended (June 2016).

You may also be wondering what’s changed.

We’ve looked at it in detail and compared it to the previous DST, and we’ve set out the changes here for you.

There are very few changes – a few author details at the beginning and three extra questions in the document itself – but these shouldn’t affect the way the DST works.

To find the DST, look at the page on the website that contains all of the Continuing Healthcare documents; it’s now a Word document on that page.

June 2016 Continuing Healthcare Decision Support Tool amendments

Page 2 – Reader information box

The information here about who the DST is for has changed largely in line with the 2013 NHS reforms. However, the ‘Author’ of the DST has changed from the Department of Health to the following bodies:

SCLGCP*/Social Care Policy/Strategic Policy, Finance and NHS Continuing Healthcare / 11120

On the same page the description of purpose for the DST has been removed, as has the list of the other documents used in the Continuing Healthcare assessment process – the Checklist, the National Framework for NHS Continuing Healthcare and the Fast Track Pathway Tool.

That may not necessarily mean anything though, and you can find links to all of the Continuing Healthcare assessment documents and National Framework guidelines here.

Page 17 Extra question – hospitals

In the amended DST there is an extra question in Section 1: Personal details, which reads:

“Was this DST completed while the individual was in an acute hospital? Yes/No”

It’s unclear why this question has been added but, as always, be vigilant throughout the Continuing Healthcare assessment process, so you can pick up on anything that appears to be carried out incorrectly.

Remember that an assessment for NHS Continuing Healthcare should be carried out before a person is discharged from hospital. Any failure to do this is a breach of the Care Act.

Page 48 – two extra lines

There are two extra dates to be filled in by the Continuing Healthcare multidisciplinary team (MDT) and by the Clinical Commissioning Group (CCG):

“Date of agreed MDT recommendation”


“for CCG use only: Date of Eligibility Decision/Verification”

There’s nothing of apparent concern there.

Everything else in the Decision Support Tool seems to the same as before, including the descriptions and scoring levels in all 12 care domains.

If you’re about to have a Continuing Healthcare assessment, be sure to read the guidelines and assessment tools – so you know how things should work and so that you can pick up on anything that is done incorrectly.

If you’re new to care fees and NHS Continuing Healthcare, read our Frequently Asked Questions.

(* SCLGCP – Social Care Local Government and Care Partnerships)


  1. Sue 2 years ago

    I am due to attend a Decision Support Tool assessment next month. I myself am an retired Registered Nurse. When the nurse rang me to make the appointment last week she did everything she could to discourage me from attending saying it was not necessary etc. I played my cards very close to my chest & told her calmly ( twice ) ” I want to be there. My mother is severely demented & cannot speak for herself so I must be with her .” I could tell she was not at all happy. At the end of the conversation I casually remarked ” Oh BTW I am a retired RGN.” The silence was deafening!! After about 10 seconds I actually said ” Hello, are you still there ? ” She then said in a very clipped curt way ” Yes, yes, yes oh ok I will see you at the appointment. Goodbye”. She could not get off the phone quick enough. I am reading all that I can for this assessment to be well-versed but has anyone any advice or help please. I have also insisted that the manager of the home (who is completely on my side) is present at this appointment in the hope that between the two of us we will be able to deal with this woman. Many thanks.

    • Jenny 2 years ago

      A good start Sue. Ensure you’ve downloaded the Decision Support Tool (DST) from the Government site, read each domain and can score (with evidence from notes and examples) at the appropriate level to reflect your mother’s health needs. Do this in advance of the assessment and hand in your scores and notes with the DST at the end to ensure that all the information and reasoning you have collected reaches the panel. On the assessment day, remain calm, fact focused and resolute. Have the National Framework to hand on a device and with a search facility at the ready, or know the references to the sections relevant to your case eg managed need, health need, nature intensity complexity,beyond the remit of the local authority, and time limits for response by CCG and Commissioning Support Unit (CSU) and be prepared to refer to them if your assessor goes “off piste”.
      A small point; it is not just “this woman” you’re dealing with. It’s entirely likely the majority of your CCG or CSU will be as ignorant and difficult as possible. Sad, but from experience, true.

  2. Daz 2 years ago

    Please can someone clarify this situation. While I was visiting my mother, I was asked by a nurse to discuss the findings of her 3 monthly Decision Support Tool (DST) assessment review. I had been present in both her previous reviews at the hospital. I asked why I was not invited to the review and was told that as it was a review my presence was not required and that the review had been carried out by the Deputy Ward manager. My mother has advanced dementia and Parkinson’s Disease and does not have the faculties to make decisions for herself. I have POA on both financial and health and welfare for my mother. Does anybody know whether this review can be carried out without my prior knowledge and consent?

    • Chris-G 2 years ago

      DAZ. Framework States:-
      139. If the NHS is commissioning, funding or providing any part of the care, a case review should be undertaken no later than three months after the initial eligibility decision, in order to reassess care needs and eligibility for NHS continuing healthcare, and to ensure that those needs are being met. Reviews should then take place annually, as a minimum. It is expected that any previously completed DST (Decision Support Tool) will normally be available at the review and each of the domains and previously assessed need levels considered by the reviewer. This should be done in consultation with the person being reviewed and any other relevant people who know the person who are present at the review. However, the focus of the review should not just be on whether the individual remains eligible for NHS continuing healthcare but on whether needs are being met and whether the package of care remains appropriate.’

      If the lone assessor created a DST then I would also argue the legality of it. The DST should only be created by a properly formed Multidisciplinary Team and a lone assessor is not a Team.

      As you hold the correct Health POA, you are the defacto person under review. So the care needs review is unlawful without your or your nominated representative’s presence. To confirm…. Look up all of the mentions of the need to include the ‘person’ in the decision making and assessment process too…… You and not they are the ‘person’ in regard to decision making (if not the subject of the asssessment).

  3. Martin Collins 2 years ago

    Please can you tell me where in the Care Act it states that an assessment for NHS Continuing Healthcare (CHC) should be carried out before a person is discharged from hospital. Any failure to do this is a breach of the Care Act.
    NHS CHC assessment should be carried out when the individual is at their optimum. This is not always the case when in hospital? I am confused

    • Chianti 2 years ago

      Assessment notice: contents

      3.—(1) An assessment notice must contain—

      (a)the name of the patient to whom the notice relates;
      (b)the patient’s NHS number;
      (c)if given before the patient’s admission, the expected date of admission and the name of the hospital to which the patient is expected to be admitted;
      (d)if given after the patient’s admission, the name of the hospital in which the patient is being accommodated;
      (e)an indication of the likely date of the patient’s discharge, if known;
      (f)a statement—
      (i)that the NHS body responsible for the patient has complied with its duty under paragraph 1(4) of Schedule 3 (duty to consult patient and any carer(1) that the patient has);
      *(ii)that the NHS body has considered whether or not to provide the patient with NHS continuing health care, and the result of that consideration;* and
      (iii)as to whether the patient or (where applicable) the patient’s carer has objected to the giving of the assessment notice; and
      (g)the contact details of the person at the hospital who will be responsible for liaising with the relevant authority(2).

      • Chris-G 2 years ago


  4. Anne T 2 years ago

    Can someone please advise. I recently attended an assessment as support for a friend. The Multidisciplinary Team (MDT) met with us and gathered the evidence for each domain. The domains were not scored. I queried this and was told they were now done at a later stage by the MDT as previously it had led to much disagreement if the individual and their family were included. The completed Decision Support Tool and recommendation will then be sent to the individual for comment before going to the CCG for approval. Is this now the case? I thought the individual/representatives had the opportunity to comment on the scoring at the meeting, and their views to be recorded?

    • Chris-G 2 years ago

      Anne T, your views regarding the domain scores should have been noted as your observations and perhaps diary entries might well be at variance with records etc.
      Every Multidisciplinary Team assessment that we have attended for two relatives over the last 8 or 9 years have at least contained our domain scores, even if the in private session that decides the scores and recommendation, went against us.
      Without knowing what was stated by you at the time, how could you appeal any in private variance with what you considered valid?
      Their rationale has led to what looks to me to be an invalid Continuing Healthcare (CHC) assessment. It appears contrary to the National Framework that requires representatives to be heard and recorded within the Decision Support Tool.

      • Anne T 2 years ago

        Many thanks for your reply. The recommendation has now been received and, as expected, has not recommended eligibility. I am now advising my friend to dispute the process by which this recommendation was made, and request a second assessment. Although our response to the recommendation will be thorough, it is my experience that the panel rarely overturns the Multidisciplinary Team’s (MDT) decision.
        I was also very disappointed at the meeting with the role of the Social worker. He was clearly regarded as part of the ‘health’ team,(it was actually stated that the MDT regarded him as part of the health team!) and made no useful comments regarding legal care limits as stated in the Care Act, or indeed made little contribution to the discussion.
        It takes determination and time to fight this flawed process, as I have learnt myself in the past fighting for my own late mother’s case. I am now awaiting a meeting with an Independent Review Panel, I will not give up!

        • Chris-G 2 years ago

          The second assessment should not be considered a replacement for the original and disputed assessment. Any appeal should address matters, so do not allow them to simply do it again. Make your entire appeal in minute detail including repeated long hand references to the law and the framework at every point, ( I cut and paste lots of them to a word processor file and then cut and paste them over and again into the appeal document), as if you were addressing the IRP and this might save some time later because all you will need to do is to add any extra stupidities discovered in the intervening period. You end up with a massive list of infractions and then proof and the explanation of the relevance of the law or the framework reference. It starts to read like a long winded court document.

  5. Ray McQueen 3 years ago

    My father in law is shortly to be assessed for eligibility of NHS Continuing Healthcare (he ‘passed’ the initial assessment 12 months ago) but it’s not clear to me how an objective decision can/will be reached at the end of the second assessment.
    The ‘National Framework for NHS Continuing Healthcare’ states that ‘a need should not be marginalised just because it is successfully managed’. However, if a need is successfully managed via medication, care etc, how can you assess an underlying need? Do you consider the individuals behaviour prior to the medication/care?
    Any advice would be greatly appreciated.

  6. Janet Martindale 3 years ago

    Yes that’s the page, however I can’t open 3 of the documents that are ms word. The others are fine in PDF format.

    • Angela Sherman 3 years ago

      Sounds like an issue with either your PC or Word on your PC perhaps?

  7. Janet Martindale 3 years ago

    Hi, I am trying to obtain the ‘user notes’ that are mentioned in the DST. I can not open any of the documents on the government website that are in MS word form, they all open in gobbledegook. Is it my pc or is anyone else having the same problem?

  8. Alison Partridge 3 years ago

    Dee Dee, I’m afraid I don’t have your expertise so any advice on what I should broach or how I should make them take notice and listen would be welcomed! I am just sick of vulnerable people suffering because of this ‘wilful neglect’ 🙁 If we don’t fight for them who will? Not the government unless we give them no choice and expose them. I don’t trust anyone anymore and even the politicians will only help if it makes them look good or they are backed into a corner. It’s about time people are held accountable. I will go to the papers, our local news channel (Peter Levy is a true advocate of these type of fights for the people). I know it won’t be easy but I intend to do my best to change things! I am going to start writing to Mr Hunt and hopefully get some type of response, but a meeting (very doubtful) would be good. He needs to know that his Continuing Healthcare nurses or what ever they are, are abusing the system. Our disabled and frail should not be suffering at their hands! His framework says that a persons wellbeing and needs should be foremost in care planning yet I have seen nothing but neglectful, inhumane practices to save money. I have a suspicion that this may be part of a hidden framework that the government can’t publicise or take responsibility for! Things are hard enough for our vulnerable, help should be easy. They shouldn’t be treat like they are benefit fiddlers and cross examined at every turn, especially when it is obvious how ill they are!
    Angela THANK YOU so much for this site. It has helped me so much. Reading the stories of all these brave people fighting for their relatives just gives makes me more determined to do whatever I can no matter how small to head in the right direction. My meeting is for Friday 11th Nov not last week as I thought, so if anyone has anything they think I should mention to my MP please let me know. More help the better!

  9. Alison Partridge 3 years ago

    Dee Dee, I agree Jeremy Hunt should know how his Framework is being misused and I intend to do just that. I began fighting for my son but after all the lies and negligence I have encountered I am wanting a full overhaul of the system for all our vulnerable adults. I have a meeting with Dianna Johnson today and hope to get her agreement to help open an investigation. I want her to speak with Jeremy Hunt and see how flexible his framework is and the consequences for CHC nurses if they say his framework is wrong and use their own interpretations of it to do a MDT/DST like the nurse I had did! If I get her ok and help I am going to need many factual cases to present, to help get these people punished for their negligence. They should not be working with vulnerable adults and should be sacked. Its a crime. Wish me luck!

    • Dee Dee 3 years ago

      Alison I am hopeful you can achieve this. I am a professional that fights against this incompetence and it is so hard and difficult for me to do and to watch. Indeed it is a crime it is called wilful neglect which is a criminal offence. People have their needs intentionally minimised and ignored and intentionally not wrote down. It is quite concerning to see ‘clinicians’ (as they call themselves) do this

    • Chris-G 3 years ago

      The trouble is Alison that the secretary of state is no longer responsible for the NHS in the manner that was previously understood. He only really has to plan and ensure funding. CCGs are in charge via control of NHS England, Wales etc.

  10. D.Walton 3 years ago

    Insist youread through the DST before you start doing the DST. The Assessor is not there to give you the funding they are there to make sure you DON’T GET IT.
    These people are a law unto themselves and ‘make up the rules as they go along’. They will ALWAYS try to downgrade you father’s condition to give him a Lower Score than he is entitled to.
    At one meeting (not the CHC Assessment, they told me that as my mother could be discharged from hospital within 48 hours she did not qualify for 6 weeks ‘recovery’ funding, (I have forgotten the proper name for the 6 weeks funding). Then said the discharge meeting would be held in 6 days time. Oh Yeh. I said they had just ‘disqualified themselves’ but they insisted it went on when my mother could be discharged and not when the discharge meeting was held.
    When I eventually got it in writing from the Council that I would be granted the 6 weeks care, we were told that they would find a Residential Home for my mom for the 6 weeks but we would then have to find a home for my mother after that. They then said that if we could find a home for my mom quickly, then instead of going to their selection for 6 weeks and then being transferred to the Home we had found, she could go straight to the Residential Home we had found. 1 move instead of 2.
    Off we went and found a permanent home for her and at the Discharge meeting told them of this and they turned round and said that ‘As we have found a permanent home for my mother we were now NOT eligible for the funding’
    How’s that for twisted logic. These people will give you nothing. There are 2 CHC Assessments, In the 1st one the categories are rated A,B,C and you need at least 2 A’s and several B’s to go to the MAIN CHC which has about 11 sections and are rated Severe. High. Moderate, Low and finally No Needs. You need 2 Severe’s (and there are only about 4 sections that have a score of Severe) and several Highs to get the funding.
    Another stunt they get up to is to contact you to arrange a meeting, if you say sorry I am at work that day, they then select another date and you might be working that day also, so you say sorry, I’m working that day as well. They record that as ‘REFUSED TO ATTEND MEETING’
    I was asked to attend meetings and I said Sorry. I am holiday in Spain and will send you proof of that.
    Several days later I had a phone call and the lady who said that as I had still gone to Spain, and I quote “Don’t you care about your mother”.
    I said earlier they are a law unto themselves and do everything they can to stop you getting the CHC Funding. Everyone who comes into contact with these people become Shell Shocked with how you are treated. I know this sounds a horror story but that is what Social Services are like.
    If you go on Google and put in CHC Assessments, both Assessments are on the NHS website, but each is about 40 odd pages long, but the CHC Assessments are at the end of the print off the whole. Good Luck, you’re going to need it.

  11. Cernyw Llewelyn-Jones 3 years ago

    I’m sorry if my question is not exactly relevant to this thread, but I’m struggling for clarification. My question is: The need for a Continuing Health Care Assessment seems to be dependent on the outcome of the Decision Support Tool (DST) 17 page report, and that it relies on that report showing a need for continued HEALTH care (medical)? And I’m not sure if that includes the likes of Dementia, Alzheimers etc, or as it sounds medical only, ie infections such as urine infection, problems with catheters, low Potassium levels and subsequent falls in hospital due to all these issues, which my father has had recurring since May this year when admitted to Hospital for a mild Stroke.
    The Hospital and Social services carried out a DST without myself present a month ago (when it had been made very clear to them by me that my Mother was not capable of representing my Father on her own, nevertheless they went ahead with what they called a chat! The outcome was a DST with no reccomendation for a Continuing Health Care Assessment . We were also told by both Hospital & Social services that my Mother knew what the meeting was about and that she had signed the DST. They then pushed to Discharge my father until I stepped in and asked for proof. No signature & eventually an acceptance on their part that we had been mis informed. I have this on an email from the Hospital.
    I am today going to a meeting to re do the DST and I have this niggling uncertainty as to my question above.
    I’m sorry it’s long winded but unless I can clarify this point, I fear they may win again due to this health requirement issue?
    Thanks Cernyw Llewelyn-Jones

    • Angela Sherman 3 years ago

      Cernyw – eligibility for Continuing Healthcare does not depend on any specific diagnosis or symptom, i.e. whether a person has dementia, Alzheimer’s or another diagnosis is irrelevant; eligibility depends instead on the day to day care needs, regardless of their cause. The issue with the signature sounds like a serious breach of professional standards, to say the least.

  12. D. Walton 3 years ago

    Hi Dee Dee, Wendy & Jenny
    Thank you for your replies. I thought it strange that someone who is immobile (though not from spinal injuries) could be classed as a ‘No Needs’ at a CHC Assessment but I heard that as the CHC assessment gets tougher, the Assessors are looking for more ways to disqualify patients from getting the Full Funding and this was one of the ways they are trying to do it.
    But, the way you have all explained it, it has put my mind at ease so thank you all for your comments

  13. Jenny 3 years ago

    Sounds unlikely to be cogently arguable. No need to move the person? What about maintaining skin integrity, toileting, socialisation for mood, behaviour and cognition? What about movement to maintain circulation or to prevent muscle wastage?
    Managing a condition (and the condition is immobility – however caused) can’t mean doing nothing when assessing the totality of needs.
    I’d also argue the risk of falls was equal to the training and skill of those doing the hoisting.
    Further, if previously at Severe, surely the descriptions in the High and Moderate boxes would be exceeded? It’s worth remembering that the assessors and you should be working through the levels to assess need.

    • Dee Dee 3 years ago

      Also worth remembering the co-ordinator is not always an assessor – merely co-ordinating the process.

  14. D.Walton 3 years ago

    I have heard that in the Final CHC, (Mobility Section) where the ‘Severe’ rating says ‘immobile’ this only applies to someone who is immobile with a spinal injury.
    If a person is ‘immobile’ from the neck down (through old age), and cannot be moved from thier bed to a chair and back using a ‘hoist, this is now classed as ‘No Needs’ in the mobility section as there is no danger of any injuries to the patient, as there is no need to move the patient any more. So the patient will lose the ‘Severe Rating’ and it will be downgraded to ‘No Needs’ and so may disqualify the patient from getting the full CHC funding. Has anyone had this problem yet at a Full CHC funding assessment??????????

    • Dee Dee 3 years ago

      Rubbish. Someone who is immobile is certainly a high if not a severe! Dependent upon contractures or spasms or anything else that contra indicates. Not correct. Do they actually make this up as they go along !!

      One day just one day some of these CHC incompetent co ordinators will actually realise they are possibly intentionally compromising their professional integrity and deserve to lose their PIN numbers. Failing this they are not capable of doing the actual CHC process and shouldn’t have a PIN number anyway due to lack of skill and competence.

    • Wendy Barron 3 years ago

      Hello D Walton, just to add to the replies you have already received. What you have heard re immobility is absolute nonsense. Any patient who is confined to bed for prolonged periods of time, regardless of diagnosis, are at severe risk of developing complications. The subject has been extensively researched and documented. For example, check out This is just one of the many websites concerning the subject. Also, I would add as an aside, that patients who are immobile and confined to bed often have cot sides/rails in place, but having these in situ does not mean the patient is immune from falls and injuries. Caring for a patient confined to bed rest requires skill, knowledge and expertise as any practitioner “worth their salt” should know, common sense should dictate that the needs of such patients are intense, complex and unpredictable. Regards Wendy

  15. Dee Dee 4 years ago

    It’s a national problem – serious abuse of the process

  16. john Petters 4 years ago

    I’ve now had the latest DST sent to me in double quick time.

    I downloaded the revised 2016 version from the web and it says, in the Executive Summary, ” It is important to note that these are national tools and the content should not be changed, added to or abbreviated in any way. However, CCGs may attach their logo and additional patient identification details if necessary (e.g. adding NHS number, etc.).”

    I take that to mean what it says. However, the one sent to me is nothing like it and has been adapted by the CCG. It has 45 pages – pages 1-5 are missing.

    There is no Executive Summary containing the above warning about changing the DST.

    Page 1 and 2 are a mish-mash of section 1. They also have mother’s previous address incorrect.

    There is no Lead Coordinator listed, or present, nor was I told there was one.

    The Recommendation is handwritten on a continuation sheet and has not been signed.

    There is a paged added where those present signed to say that they had attended, but the Recommendation itself is unsigned. My entry has had the date and the word “Son” added.

    Pages 49 -54 are missing. (Equality monitoring) – this had been done at the Checklist, but I would have expected the pages to be included in the complete document.

    Am I being pedantic here or is this a serious abuse of process?

    • Angela Sherman 4 years ago

      I think you’re right, John. It sounds as though there are some major flaws there. None of the assessment ‘tools’ should be altered in that way or have pages missing. Sounds very shoddy (to say the least) on the part of the CCG and the MDT.

      • Chris-G 4 years ago

        A recent development locally at least, has seen the DST dismantled and redacted for some reason, prior to allegedly having only the MDT’s recommendation pages passed to a CCG manager by the CSU staff that carried out the assessment and the CSU panel that instead of making the decision for the CCG (Illegal), now allegedly only makes a second recommendation to the CCG.
        Yet law actually requires that the DST in it’s entirety is required to be used by only a CCG, to make an eligibility decision.

    • Chris-G 4 years ago

      John Petters, Is the actual CCG’s name on the top of it or does it have their Commissioning Support Unit’s name? I pointed out this error over two years ago…… Ignored as usual, even after commenting about lack of fitness to practice being displayed by such obvious breeches of the National Framework.
      The rules state that a CCG can add it’s name to a DST as the header. Letting a CSU put their name on it would invalidate the DST in a court. Unfortunately, the level of evidence and procedure is not required to be that required in a court and, as such, people cheat and lie to get their own way…….. simply get away with other breaches of the rules and law.

      • john Petters 4 years ago

        Chris, I got a huge amount of paperwork from the council today as a result of a subject access request. This deals with the DST from a MDT of 31st March, not the one above on 9th August.. It seems the nurse wrote the recommendation and signed it on 25th April. The social workers then signed and amended it a couple of days later. So the nurse didn’t sign the complete document.
        The CCG have stonewalled and refused to properly deal with a statutory complaint under The Local Authority Social Services and National Health Service Complaints (England) Regulations 2009 and are content to deal with matters at appeal – but this is a separate process and they have said I can go to the Ombudsman.

        The Council still will not tell me or the NHS which of my mum’s needs they are supplying legally and which illegally. The CCG said, in it’s response after taking legal advice, “The recommendation in the DST states; “the majority of her care needs as they currently present are within the level that could legally be provided by the local authority”. This sentence refers to the result of the DST. Since the DST indicated that your mother was not eligible for CHC funding, the local authority, x County Council, is able to provide your mother’s care within the parameters set out by the National Framework for NHS Continuing Healthcare and NHS Funded Nursing Care 2012 (the “Framework”). This is what is meant by the term legal limits. The CCG cannot answer questions on behalf of another agency. Therefore, S J W has asked x County Council to respond to your query that relates to it. She will continue to prompt them for a response and get back to you. In relation to the requested documentation please see point 12 below.

        The letter concludes,” You are correct. You are entitled to make a complaint under the Local Authority Social Services and National Health Service Complaints (England Regulations 2009) (the “Regulations”). As per the Regulations we have provided you with: 1) an explanation of how the complaint was considered; 2) the conclusion reached including whether or not the CCG needs to take any remedial action; and 3) confirmation as to when the remedial action proposed will be taken.
        Since the complaints process has been exhausted and you are not satisfied with our response, we suggest that it is appropriate for you bring the matter to the attention of the Parliamentary and Health Service Ombudsman to review your case. You may contact the Ombudsman on their helpline on 345 015 4033 or you can complete their online form at
        Importantly, the matter of challenging the outcome of the MDT and the DST is a separate issue from your complaint. Paragraph 90 of the Framework is clear that only in exceptional circumstances will the MDT’s decision be overturned. After examining your complaint, it is the CCG’s belief that no such exceptional circumstances exist. Therefore, the suggestion that you make an appeal is consistent with the Framework’s recommendation for challenging individual eligibility decisions”.

        • Chris-G 4 years ago

          John, it all sounds very suspect.
          Have you made the local appeals for both of the assessments?
          If not then it may be wise to play the NHS’s game and then await the inevitable need to go to IRP.
          IRP chairs will not deal with complaints (Ombudsmen for the council and a separate one for the NHS will, but only after you have made the complaint to the involved authorities).
          However, the IRP will listen to complaints and review the CCG’s responses because they often relate to procedural impropriety if not downright illegality. If arguing about the domain levels and the council’s remit to provide care is difficult, then a long list of procedural failures is best dealt with at IRP. They will also have the entire file that will also be sent to you.
          You can make submissions to the IRP when requesting the hearing. Then further submissions when the case pack is sent to you.
          In our case; I have made my points and then have copied and pasted in italics, the law or the rules or even both. It can run into tens of pages……. That list of infractions and the rules and law also gives me some certainty that what we are doing is justified. After all, arguing whether feeding my mum or keeping her safe, is intense, and/or unpredictable and/or intense, is by itself as likely to see the matter overturned as not.
          Even then the IRP can only make a recommendation to have the matter overturned.
          That is likely why CCG’s henchmen, the CSUs, keep trotting out the bogus line regarding how no one can argue against the recommendation of a MDT. Note; the patient’s representative can seek to change it; the CCG cannot just change it as they sometimes like to…. There is a difference.
          Again note; the recommendation is not in fact the decision. So it is the case that a CCG’s decision, if they actually made it (CSU’s were making them illegally for a couple of years), can be overturned by the CCG themselves.
          In my area, if the matter occurred between April 1st 2013 and early 2015, it is likely that the CCG did not make the decision. I made freedom of information requests that confirmed the fact of the illegal decision making. It will take the ombudsman or a court to get satisfaction.
          Lastly, if the council has financially assessed and is recharging for care, then (as with us), I myself would simply refuse to pay the council until they took the matter to court. (That last is an opinion and you might wish to take legal advice.)
          The NHS would also have to attend court if you desired because they could equally owe the money. The CHC assessment process and the complaints would have to be worked through and proven to have been used within the law.
          If someone cheated or lied or broke the law…….. (Coughlan is the case law quotable with many others, in court), then is it likely that the judge would find for the council? There is less risk in awaiting the demand than trying to begin a court case. Timings and paperwork can be complex and can lose you the case. So perhaps it is simpler to respond. The council has threatened us twice in the last three years and each time they just went away after I pointed out much of what I wrote above. I am still refusing to pay and am awaiting their action. I would rather spend the money defending the money that simply give it to the council on their say so.
          All the best.

  17. Dee Dee 4 years ago

    It is all a total farce and flawed at every stage. They are mostly overly restrictive and minimising needs ! I have just voted with my feet from being a co ordinator because of their false crap. I have tried and tried and tried to educate them. Over bearing and overly restrictive

    Jeremy hunt needs to be informed of what is going on nationally. Very very few of them actually really understand the framework and the process !

    • Jenny 4 years ago

      When a line was drawn a few years ago regarding retrospective CHC claims ?pre 2012? a fund was earmarked to settle the claims. I heard on a Face The Facts (Radio 4) programme that this fund was later transferred to another department and spent.

  18. Jenny 4 years ago

    What if no social worker has been appointed, or has signed themselves off at a time before The Care Act 2014 extended their responsibilities to self funders? Perhaps there will be some interesting cases coming up as all concerned appreciate the extended liability?
    In my experience Care home managers, or more particularly lead carers, can be helpful at DST stage, but I’ve not heard of a manager suggesting CHC application. They tend to view it as turkeys voting for Christmas, as a split fee arrangement with SS or unlawful banding of fees paid by NHS reduces their income.
    In effect, it’s left to relatives to get informed and take action.

  19. Dee Dee 4 years ago

    The care home or social worker should inform if needs have changed. You can also tell them yourselves you would like a checklist done again

    • Michael Fairholm 3 years ago

      I am currently fighting for my mother to be assessed as she should be fully funded as she has been for several years, but now only nursing care funded. The annual assessment has just been cancelled owing to the social worker having an accident. Recently been told by a social worker that my mother does not have a dedicated social worker or even an alocated one, as she is self funding!! So what information can the social woker give at the assessment meeting that can have any relevance? Secondly, the mental health nurse attending can have the same lack of knowledge of the person being assessed. I asked A social worker What was the point then and she said that it was part of the process that somebody had to be there from-that service! In that case and as i see it, the whole process will be based on the home’s management, what if their comments and statements are untrue, as in my case!! It is my word with written evidence and what my family have observed against theirs, the whole process is flawed. Sure all attendees at the meeting must hane an in depth knowledge of the person being assessed for it to give an acurate and truthful outcome.

      Mike F

      • Dee Dee 3 years ago

        You could always get a private social work and clinical assessment to accurately inform the CHC process and completion of the DST.

      • Chris-G 3 years ago

        DeeDee makes a good point. We have previously employed an independent nurse assessor to assist with an early Continuing Healthcare assessment and the subsequent Independent Review (IRP). The internet will have a list.

        • Dee Dee 3 years ago

          It is better to have an independent assessment in the first instance. Before it gets to appeal or Independent Review Panel (IRP). But I guess people trust they will assess and complete the document correctly. Unfortunately they do not.

      • Angela Sherman 3 years ago

        You’re correct, Michael, that the people carrying out the assessment must have up-to-date knowledge of your mother’s care needs. A social worker or local authority representative must be involved regardless of whether or not your mother is currently self-funding. This may help you: and also this article:

        • Dee Dee 3 years ago

          Did anyone watch yesterday’s Rip Off Britain!! All about Continuing Healthcare.

          • wendy barron 3 years ago

            Yes Dee Dee, I watched it. Some interesting points highlighted, and I welcome the publicity the programme achieved regarding the shockingly disgraceful system that is NHS Continuing Healthcare. What is also needed is a Public Enquiry into the whole system from its conception.

  20. Chianti 4 years ago

    Once a relative is in the care home whose responsibility is it to flag up deterioration in health and the need to review using the checklist for Continuing healthcare funding? Grandma had been assessed using the Checklist in 2015 and a DST was duly carried out. On that occasion she was not considered eligible for funding even though she had vascular dementia and multiple problems with incontinence and persistent UTIs. After suffering a number of falls at home, the doctor recommended we look into a care home and Grandma was accepted as a permanent resident in mid January. A few weeks passed until Grandma began with another series of falls that saw her going in and out of hospital as well as visiting urology clinics for suspected cancer of the bladder. Her age and frailty prevented a thorough investigation of this. At no point was any further assessment carried out as to whether she was eligible for CHC funding. She was taken to A&E after another fall, had problems raising her leg when assessed, but the attending doctor did not remove her socks to properly assess her feet. She was sent back to the care home at 2.45 in the morning and when her GP arrived later that day he diagnosed gangrene in her toe. It was left to auto amputate but still no one flagged up the need to carry out an updated assessment of her health needs. Who should be taking responsibility for ensuring that these assessments are carried out? The GPs tell me that they only advise that a care package should be considered when dealing with patients in their own home and pass family and the patient on to Social Services. Social Services don’t do anything unless family or someone concerned asks for help. The care home say that this is the duty of the attending doctor (in hospital or a visit to the care home). Even the Integrated discharge team who have been very quick to send me contracts to sign making me responsible for paying care fees have abdicated the responsibility to the locality team! According to the NHS framework it is the duty of the “Relevant Body” I.e. the “CCG” or the “Board” but who is supposed to tell them???

    • Christopher Gallagher 4 years ago

      The nursing home should do it. You might have to make them do it. My father in law had two inches of stump showing from a failed surgery to his thigh and the nurses later claimed they had no time to do a checklist etc. Even after two weeks? They were of course far too busy trying to provide care that the hospital had denied him after sending him home like that.

    • Angela Sherman 4 years ago

      Chianti – any health and/or social care professional involved in your Grandma’s care should flag up the need for reassessment. Sadly, the level of training and knowledge about Continuing Healthcare is shamefully low. GPs often know little – if anything – about it. Care workers have often never heard of Continuing Healthcare. Social workers have a legal duty under the Care Act to flag up when a person may need NHS funding, but (from the reports of hundreds of families) they very often don’t. Care homes have a conflict of interest, because they will be paid less by the NHS (through Continuing Healthcare) than if a resident pays for themselves. The situation is far, far from ideal. It often falls to families to push for assessments – but of course that assumes that families know about NHS funding in the first place. You could write to the Head of Adult Care at the local authority (LA) and state that the LA is potentially in an illegal position by failing to look at whether your Grandma’s needs are now beyond the LA’s legal remit, and insist that they initiate a reassessment for Continuing Healthcare.

      • Chianti 4 years ago

        Thanks for this. Unfortunately Grandma passed away on 21 July. We may now be saddled with bills to pay off her care costs, an equity release on her property and the funeral expenses amounting to something like £25,000. She deserved a better response from the health and social services, slow to identify an increase in her health needs but fast enough to ensure they have me sign documents making me responsible for paying up. I will be writing again to the Integrated Discharge Team asking why a checklist was not carried out. Their representative has told me that this is not routine and not their responsibility. Do I take up the fight for a retrospective checklist with her first or cc in the head of Adult Care. The last time I involved him I had to get the MP involved before I got an answer. At this difficult time family should not have to face a battle with the authorities who have statutory duties that they seem willing to ignore to save money. As I am also in the process of ensuring appropriate care for my younger PMLD brother I can’t believe I’m having to go to these lengths to get something Grandma was already entitled to. 🙁

  21. Jennie 4 years ago

    Thank you so much Jenny & John for your replies.
    Jenny – I will look at The Care Act as you suggest & John – Yes I am considering a complaint.
    Update: NHS Nurse Assessor visited Care Home today to talk to same fantastic Team Leader & asked if she wanted to change/amend her observations. Team Leader said `No`& Nurse Assessor left.
    So I must wait now to hear the Assessment results & prepare to Appeal if decision is not favourable. I will update this site when I know more.
    Kind regards to all.

    • Angela Sherman 4 years ago

      What a terrible ordeal for you, Jennie, especially as your mum was at the end of her life. Many families will, I’m sure, echo your sentiments about the whole system. The attitude of the nurses is dreadful, not least their attitude in the light of your mum having been self-funding. It sounds like financial abuse. They should have Fast Tracked your mum. The whole funding assessment process and the decision should be completed in 28 days, however that rarely seems to happen. A successful award of CHC should be backdated to day 29 after the Checklist was received. See page 133 of the National Framework for more on that. The LA has a legal requirement to be involved (Care Act), and it sounds as though they have put themselves in an illegal position by failing to take a view about whether your mum’s care needs were beyond their legal remit. Here’s the article that Jenny mentioned: The people in the multidisciplinary team at the full assessment are authorised to make a recommendation only, not an actual funding decision; they do not have that power. A person receiving CHC does not have to go into a nursing home, and the person/people who told you that would seem particularly cruel. So sad you’ve been going through this, Jennie. Wishing you well with the appeal once you’ve had a chance to recover a little.

  22. john Petters 4 years ago

    Very sorry for your loss, Jennie, may she rest in peace. Looks like a complete abuse of the process.
    I would make a statutory complaint under The Local Authority Social Services and National Health
    Service Complaints (England) Regulations 2009. You can complain to the chief executive of the CCG and the chief exec of the relevant county council about the social workers.
    That will get them leaping about as there are set procedures which have to be followed.
    I’m doing this in parallel with the appeals process.
    Don’t give up.

  23. Jenny 4 years ago

    ps There was an excellent article on this site relating to self funders, and the effects of The Care Act 2014. Have a look at that too as it may help.

  24. Jenny 4 years ago

    Sorry to hear your sad news Jennie. Your case is similar to my own in many ways, and perhaps demonstrates how widespread the strategy and tactics are throughout the NHS and Care homes in the UK. I’m glad the teamleader was fantastic for your case; it restores faith in humanity doesn’t it? I can only applaud your commitment and objectivity. When you are ready, keep up the pressure and recover what your mother was entitled to. Remember that The National Framework says that evidence in DST has to be of an appropriate standard, and not Court standard, so make sure her notes don’t “Go Missing” from the care home in the interim.
    I am sadly convinced that “Wins” only occur where relatives are very well prepared and persistent. The reality is there is insufficient funding, too many old patients with long term conditions for the funds available, and a convenient level of ignorance among “shop floor level” NHS staff, which deters patients and their relatives.

  25. Jennie 4 years ago

    Mum aged 91- severe dementia & aggression plus numerous health needs-been in Residential Home with Nursing for past 5 yrs. EMI Nurse & DOLs team recommended applying for full Cont. Healthcare funding in Sept 15. Checklist done by Care Home & sent off mid -Oct 15. I believe full Assessment DST meeting should have happened within 29 days? Delay after delay – meeting took place end May 15. No-one other than myself (well prepared-big file & read Angela`s book several times) & Care Home Teamleader (who was fantastic) turned up to support my Mums case. The 2 NHS Nurses – the decision makers – said this lack of interest by Professionals was because she was self funding – (£1000 per week) & if Social Services were paying all-sorts would have been there inc Social Worker, Mental Health Doc, poss GP. The NHS Nurses did not want to talk with me & it was only when I insisted on putting my viewpoint was I allowed to speak at the end of each Domain being discussed. Although 1 `severe` + 5 `Highs`+ other lower scores were given, the 2 NHS Nurses (who make the decision on eligibility & not a Panel – who I`m told only get involved when there is dispute) decided more info req`d on Behaviour to move score from `High` to `Severe`(thus triggering funding?) as they said Team Leaders` word is not sufficient & written documentation of aggressive episodes was not up to date & more detail is needed. So they will visit Care Home this week to obtain. Sadly my Mum died yesterday – 1 week after GP said she had entered end of life phase. So I am in process of dealing with funeral etc.
    I will however continue to try to get funding dating back to Nov 15 when Full Assessment should have taken place & Mum clearly had a primary Health Need. I wonder if NHS drag this stuff out for as long as poss hoping loved one will die & relatives will give up the fight & disappear? During all this process – Care Home managers insisted that should Mum receive full Cont Care funding she would have to move to a Nursing Home – even pressuring GP to warn me as Mum was dying that if NHS Cont Care was awarded she would have to be moved & making me feel like a wicked daughter in Mums dying days.I think they all get confused with NHS Cont. Care (all fees paid) & Nursing Funding (only Nursing Component paid.)
    GP admitted she does not understand the system! This lack of knowledge/education is a scandal & exerts unfair & incorrect pressure at a time of grief & despair. I still hope for a good outcome & encourage others to wise up, prepare well & keep persevering on behalf of their loved ones.

  26. Jane 4 years ago

    Thanks. The continuing care checklist has been completed by the hospital a few days before mum in law was discharged. If we hadn’t asked if it was going to be done, we would not have known. It was a joke! We questioned the hospital about their answers and they replied that they could only base the report on mum in law’s stay in hospital. No history of falls, this is her second hospital stay following a fall; incontinent – at least twice she has been found in a wet/soiled bed while in hospital etc etc.
    Now she is at home with a live in carer who is saying she can’t manage mum in law’s needs and is asking for backup. The community matron is going to redo the checklist – but what a waste of time. If the hospital had listened to us at the time this situation may have been avoided. It is so unfair and such a strain on the family.
    Any opinions, suggestions or advice welcome.

  27. Jenny 4 years ago

    If we go for a retrospective eligibility claim, should the DST of the time be used to assess, or the one in current use please?

    • Angela Sherman 4 years ago

      As far as I know it’s usually the eligibility criteria that were used at the time.

  28. john Petters 4 years ago

    Can anyone confirm if this version was available before June 2016? I smell a rat. My mother was assessed on 31st March and I have only just received the DST, signed and dated only by the nurse on 25th April 2016. It looks like this document was not available before June. Can anyone confirm if the 2009 document was updated after March 2014 or at all? The one I have from 2014 looks like the 2009 document and is different to the the new one.

    • Chris-G 4 years ago

      The 2009 was updated for use circa 1.4.13. Then we get the current version in 2016.

    • Angela Sherman 4 years ago

      As Chris says, the previous DST was updated at the end of 2012 and was used from early 2013, and this latest DST has been updated in June 2016. There are few changes of any immediate consequence in the 2016 update.

  29. Jane 4 years ago

    My mum in law is due to be discharged from hospital after being admitted with a fractured pelvis. This is her second serious injury due to a fall within a year. She has been supported at home by 3 daily visits from carers and frequent assistance from her daughters.
    In the last 4 months she has had pneumonia, urinary tract infections and has been on low level oxygen therapy and antibiotics. Her mobility is poor, she is unable to prepare any meals for herself and it sometimes seems as if she has no interest in maintaining any level of good health.
    Because her mobility is poor she is reluctant to go to the toilet, and wears incontinence pads, which she sometimes soils. Or she will hold her urine which causes discomfort.
    She is in pain from artheritis, and has pain medication for this.
    Her legs are constantly bruised and swollen and she has cream for this.
    Generally, she is a lovely agreeable person, but for sometime she has been disinterested in “making progress” with her health and mobility and if left to her own devices she sits and daydreams.
    I believe there is a primary health care need, but realise it could be a struggle to prove this.
    Any advice will be gratefully received.
    Thank you
    She is in pain from artheritis and is on pain medication for this.

  30. Lynda Stein 4 years ago

    Unfortunately, I still cannot open the link to the document

    • Angela Sherman 4 years ago

      Are you clicking the link in the 6th line of the actual article above, Lynda? That’s the one that takes you to the page, and the DST is the 4th document down on that page.

  31. Steve 4 years ago

    Thanks for this update. I was wondering if there was something missing as my partner is on CHC and has a personal budget. According to the CCG they are entitled to have a review at six monthly intervals.
    I am contesting that according to National Framework reviews are twelve monthly and unless there is a hidden interpretation somewhere I cannot see how they can change this.

    • Dee 4 years ago

      3 month review after DST completion and then annual is routinely advised in the National Framework.

    • Chris-G 4 years ago

      Steve. The rules state that some people might require more frequent review or reassessment. I have never got an answer as to who “some people” are.

      • Steve 4 years ago

        Thank you Chris for this reply. Although i argued against a six monthly review the CHC associate was so supportive and so helpful that i have relented.

  32. Janis Dobrin 4 years ago

    I am very interested to read that the DST has been amended asking the question as to when the MDT agreed to the jointly funding of a care package. I am currently in dispute with my local CCG. They were fully funding my PMLD daughter, who is almost 28 years old, since 2008. Her community care home is outside our local area, I am from one area and her care home is in another. At no time has a social worker ever been in touch with us or the care home , yet the CCG in this area have offered a drastically reduced care package from fully funded to 23.7 hours saying that the other area will provide the rest of the care. This was almost 2 years ago apparently in October 2014. I appealed, had a local resolution meeting and they have referred it for further evidence although at the time of the local resolution meeting I didn’t know what I was appealing against as they hadn’t informed me of the exact funding split. I have been informed over the past month after a series of letters leading me to believe that the CCG in my area have been in discussion with the other area, that the other area are now in dispute with the council in my area as to who is responsible for funding!! The further complication is that my daughter has a personal injury award that I believe cannot be taken into account within the fairer charging standards but I am not prepared to take my chances. Its beyond me how someone who’s condition can never be improved or cured can endure this treatment.

    Please feel free to post on your website – I don’t know how I can do this. Thank You Janis

  33. Jane 4 years ago

    Thanks for this update.
    Personally, I suspect that the wording has been changed to reflect the fact that apparently, if an individual is in hospital when the DST is completed, it is only their needs during their admission which are considered!
    I have learnt this myself only this week ,when trying to participate in one of my patient’s CHC application – despite having been the person’s s community mental health nurse for the last 7 years( and knowing them well as a result of this input), I was politely informed by the ward sister that my contribution to the process would not be required or considered!
    Outrageous – and yet another example of NHS corruption!

    • Dee 4 years ago

      Interesting jane – perhaps you should have pointed out to the ward sister what the framework states and the meaning of MDT

      I too am a specialist OT and frequently get asked by the co ordinator (who hasn’t actually done her own individual assessment) NOT to attend, usually because if I do I will give assessed clinical evidence of health needs

      They have even formally attempted to stop me from attending

  34. Jenny 4 years ago

    Thank you for going through the new document and alerting us to changes.
    I expect the “Hospital” and “Date” changes are so that CCGs can monitor their own performance and ensure they closely adhere to all aspects of The National Framework!

  35. Andrew 4 years ago

    Thank you for this.

    Are there any plans afoot for the Department of Health/clinical commissioning groups to rewrite the National Framework for NHS Continuing Healthcare and NHS Funded Nursing Care in the near future? I believe the last revision to that document was November 2012.

    • Angela Sherman 4 years ago

      Andrew – there are rumours, but nothing definitive yet as far as I know.

  36. Sandy 4 years ago
    • Sue Fox 4 years ago

      Hi Sandy. My Mum had the DST assessment done yesterday. I was not present (my sister was), but I wanted to download the new “improved” document. I clicked on the link you posted and tried to save the document. It saved okay, but when I have tried to open it is keeps saying “the document cannot be opened as there’s a problem with the content”.

      • Angela Sherman 4 years ago

        We’ve checked the link in the actual article and it’s working.

      • Dee Dee 4 years ago

        The DST is not an assessment.

      • Angela Sherman 4 years ago

        Sue – as Dee Dee says, the DST is a form (an assessment ‘tool’) that is completed during the full Multidisciplinary Team (MDT) assessment. Although many people refer to this full assessment as ‘the DST’, it’s good to keep in mind that it’s an MDT assessment – where there should be input and evidence from various relevant people.

      • Chris-G 4 years ago

        Better to say MDT assessment.

        • Dee Dee 4 years ago

          The DST is a document that incorporates all of the MDTs assessments. The co ordinator should actually be impartial as advised by the framework

          • Chris-G 4 years ago

            Dee Dee, Have you seen the pages recording the story of an ex IRP chair?
            Sometimes you have to experience this from the patient’s end to fully appreciate the insanity of it all. We even had a nurse assessor whom I questioned about the electronic copy of his notes and the DST. (I had them sent to me on a memory stick under the data protection act). The metadata contained within the word processor file of the notes showed that the notes had been altered by him, 35 times AFTER the assessment and the local decision. The DST had even been altered just prior to the IRP information pack being created for the IRP’s consideration. All of this is a criminal offence now, under the Heath Act. It is in fact criminal forgery under older legislation. This has all happened to us before. So I would ask; just how impartial is anyone that works within the process?

          • Dee Dee 4 years ago

            Exactly Chris. Totally fraudulent and corrupt.
            An assessment is ONLY as good as the assessor and the skill of the person writing it !!!

            I would agree it is criminal and intentional minimising /ignoring of needs is also wilful neglect. Again a criminal offence for which the professional SHOULD be struck off.

            What they say they will write and what they actually write are 2 different things

            If they cannot write the relevant information in on the day of the MDT. Then they should send it to you to proof read before submission the the imaginary panel (aka financial commissioner)

            ‘Panel’ can only read the information that is there

            One day I am hopeful they will all be held accountable for their neglect !!!

            I am a clinician that challenges everything they do not do or write and it still is a constant battle. I do not know how families manage to succeed or ever get the message over to them. They just will not listen

          • Chris-G 4 years ago

            Dee Dee, a right bunch of………. We even had a nurse assessor that was not (in 2009 or even lately), registered in the name that she uses within the CHC process. She was also a Panel member deciding her own DST outcomes. She also produced three different DST’s for one assessment. The one we received was the overruled and significantly altered version.
            At panel she altered another MDT’s positive outcome. At another assessment she failed to complete several domains or agree a recommendation. Then her colleagues completed the DST for her and overruled the LA social worker’s recommendation to fund.
            I asked for the Nursing and Midwifery Council (At CEO level), to verify the person and they confirmed that they could not because the person was not on the register. They took a guess as to who the person was (by location) and contacted the local CCG to verify.
            But they then went on to insist that the CCG was employing a qualified and registered nurse solely because the CCG insisted that she must be registered because they have safeguards in employing nurses.
            This insanity continues… Even to the point of the NMC stating that they cannot act against an unregistered nurse because they don’t know who I am talking about because she is not registered. They also advised that the Police should deal with it. The cops do not know what I am talking about. They don’t understand the crime. They won’t take the time to understand the law and do something. Note also that the NMC did not refer the unregistered nurse to the Police, themselves.

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