Quote this paragraph in NHS Continuing Healthcare disputes
In NHS Continuing Healthcare disputes, make sure assessors record your concerns in writing
NHS Continuing Healthcare disputes are common, and they can occur at any stage during the Continuing Healthcare assessment process.
Many disputes arise during the multidisciplinary team (MDT) meeting. This is the full assessment – where the assessors complete a Decision Support Tool (DST) form and then make their funding recommendation. Where there is disagreement about this recommendation, a local dispute resolution meeting may follow.
You may have verbally expressed concerns during the MDT assessment meeting and also at the end when you hear the recommendation. But how can you make sure those concerns are noted?
There’s a paragraph in the National Framework guidelines (the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care) that can help you:
National Framework page 95, paragraph 70.4:
“Where an individual and/or their representative expresses concern about any aspect of the MDT or DST process, the CCG coordinator should discuss this matter with them and seek to resolve their concerns. Where the concerns remain unresolved, these should be noted within the DST so that they can be brought to the attention of the CCG making the final decision.”
So, if you have concerns about anything at the MDT meeting make sure they get written down – very clearly – in the DST. Also, given that your concerns must at some point be noted, don’t wait until a local dispute resolution meeting for this to happen; instead, get it done at the MDT assessment:
- Before the MDT meeting ends, make sure you ask the lead assessor to include all your concerns – in writing – in the DST. (Better still, make sure the assessor does this throughout the meeting.)
- Refuse to leave the meeting until this is done.
- Ask for an immediate copy of the DST for your own records. (If the assessment is taking place in a care home or NHS office, there may be a photocopier nearby.)
As mentioned just now, where you disagree with the funding recommendation, there may subsequently be a dispute resolution meeting (held at local level) at some point after the MDT meeting. Your concerns should be fully addressed at that meeting. Take a look also at how the above paragraph from the National Framework ends. It says that your concerns should be:
“…brought to the attention of the CCG making the final decision”.
In other words, it is not only at the MDT assessment meeting that your concerns should be written down, and it is not only at a local dispute resolution meeting that your concerns should be addressed, but your concerns must also be addressed by the actual CCG decision making panel.
If your concerns have been properly recorded – in writing – in the DST, they should (in theory at least) automatically be seen by the CCG.
One final tip:
When asking the lead assessor in the MDT meeting to write your concerns in the DST, it’s also worth asking that person to add a note that you expect the CCG itself to fully address your concerns – in writing – in the letter that delivers the CCGs final funding decision.
If there is no printer or photcopier available. Photograph the assessment using your phone, I did
Very interesting. What happens, I wonder, when there is no CCG Coordinator and only one nurse assessor? I have recorded all MDT and appeal meetings. It is easily done on most mobile phones and enables me to quote verbatim what was raised at the meetings. For example, I have an appeal tomorrow and realsed there was no checklist supplied, but my recording reveals one was completed. It seems to have been destroyed. Tomorrow could be an interesting day!
Hi.
Thanks for the information which is very valid.
There is one small problem.
If, after having brought up concerns about the MDT/DST, the various organisations can, AND DO, still submit it and get it ratified without your concerns being noted/referred to even though they were fully aware.
This is just another of the many instances where the National Framework (NF) and associated guidance and legislation are totally ignored by those involved, with apparent impunity.
The problem with all of this is that there is no system of “punishment” in place that can come into effect against the various people involved in CHC.
As you go through the system, the checklist, the assessment, the MDT/DST, local resolution panel, local appeal panel, Independent Review Panel, the Ombudsman and onwards there is absolutely NOTHING with any teeth, that subjects those people failing the system and not following the legislation, to any punishment.
There can be proven and evidenced lies, alterations of documents, failing to supply documents, failing to give advice and information when required (the list goes on and on) IT DOES NOT MATTER.
The authorities carry on regardless of any guidance and legislation, they will not admit failures in the presence of evidence, they ignore with impunity and carry on in their cavalier “we don’t give a toss” manner, no matter what.
We are part way through a complaint relating from October 2015 – December 2015 that involves blatant and proven lying by senior staff, alteration of records, all evidenced and other matters .
Since December 2015 to present day, we are going through another complaint regarding this period with even more evidence of non compliance and failures by the Local Authority and the CCG.
This involves again NF not being followed and the LA adult care worker failing to comply with regulations and other matters.
IF there was some authority in place that could hold these alleged “professionals” to account in a worthwhile way, things may improve.
At present the does not seem to be any “punishment” for failure at all.
It is all an absolute mess and those involved in failing to follow the process should be ashamed of themselves as should the Government Departments who MUST be aware of this mess..
If those people put as much effort into complying with the NF etc., as they do trying to avoid it, it would be a far better situation.
Ian G.
Often there are comments on the site regarding the award of domain (scores) levels that are carried out in private. That being acceptable under the framework, it is necessary to get your domain levels recorded upon the DST or within the MDT’s notes (that only sometimes are made separately so watch for this and ask for them along with DST copies).
Don’t worry about the exact level. Use phrases like…. ‘According to the correct use of the wording within the domain descriptors, I would consider “high” is correct at the very least’. Or words to that effect. Do not let the MDT move on to the next domain without ensuring that your domain score and the rationale for it is recorded on the DST. This is another way of getting your objection and disagreement recorded even prior to the in-private MDT meeting and subsequent ‘panel’ decision. It serves as a reminder and a shorthand reference that can be expanded upon when making appeals too.
What happens when it is an annual review for Continuing funding (or not!). I had one for my wife last week (it was me who provided them with a copy of previous review!) and altho I, my son and Care Home nurse made comments and disagreement during the review, I’m pretty certain they were not written down, and we were not offered a copy of the notes written down by the assessor, although a photocopier was available. Further, her ‘supporting’ member of the ‘team’ was from the local Council Support Team, who also disagreed with some of the assertions made, I’ve no evidence that these comments were recorded either. We did at close of meeting advise her verbally that should the funding be rejected, we would be appealing the decision, and requested details of appeals address, which she said would be within the decision letter ! She seemed to disregard that because my wife’s medical condition was controlled by drugs and nursing, there was a reduced ‘score’ in that domain. But I recall that a ‘need is a need regardless of whether it is controlled’ it is still a need.
Thank you so much for the great ideas. Do you have to tell them you are recording the meeting. ?
At my relative’s recent MDT assessment, the assessor stated that she & the social worker would not pass any opinion or decide upon the mark for any of the domains at that time as they had too much paperwork to consult even though they had been doing that for 2 hours at the nursing home prior to our meeting. Therefore, although we were asked our opinions/thoughts on each of the domains & the family’s score was recorded, we were unable to discuss and/or disagree with the MDT’s decision at that time. In addition, the nursing home’s registered nurse who attended was allowed to “sit on the fence” on a couple of domains & record no score. We have now received the completed DST & the decision is that our relative is not eligible for CHC funding. The scores that the MDT have recorded are quite ludicrous in at least 2 domains, including one where the nurse was encouraged to abstain and they have marked lower in other domains where the family & the nurse agreed a higher mark. In addition, the first page of the checklist completed by the home upon admittance has the question ïs the resident self funded, yes/no” – therefore both the NHS Assessor & the Social Worker knew that there were private funds available prior to the assessment. Are these all good grounds for an Appeal please?
Useful information. Thank you.
Can we please avoid these acronyms. What is an MDT , CCG & DST? Makes it very difficult to read.
I have been told I cannot attend the MDT meeting with the Nurse Assessor and an Occupational Therapist as that is not what my CCG do. I have also been told that following their meeting they will produce the DST and recommendation and send a copy to me at the same time as to the CCG. I have told the Nurse Assessor that I should have the opportunity to comment on their recommended domain scores and recommendation and my comments should be noted on the DST PRIOR to it being sent to the CCG for decision. I am awaiting comments from the Nurse Assessor as to whether the CCG will allow this (even though it is part of the NHS National Framework guidelines that I should be allowed to!). I think my CCG make up their rules as they go along as I seem to know more about the National Framework Guidelines than they do!
The national framework requires the person or their representative or both even, to be present at the MDT assessment, if they have cognition or if that is what is necessary in someone’s best interests. Also, check that it is a council occupational therapist and not just a rebadged NHS Registered Nurse. A MDT must not consist of two nurses alone. There are supposed to be multiple disciplines. Also, can a person charged with Occupational Therapy undertake the creation of an enforceable assessment in their own right or does it actually require a trained social worker? There is supposed to be an assessment made on the council’s side that is separate from the MDT assessment.
Colin.
We all sympathise regarding the initials but, if you are at the beginning if this process, you will, sadly, soon know what they all mean.
They will eventually trip off your tongue.
Good luck with your enquiries.
Onward and upward.
Regards.
Ian G.
Our area no longer give their decision to award or not at the end of the MDT meeting, preferring instead to write, presumably to avoid challenge. Is this within the framework?
Is a registered nurse and a mental health nurse a multiple discipline? The CCG in our area seem to think so. Also on the DST doubt any of your input is recorded. Ours just said “your comments are noted ” but no detail of the comment was written into the DST. We were allowed to record the LRP meeting. What a farce, so patronising especially the chair who was the Deputy Exec of the CSU. Don’t trust them that they are taking notes , they pretend to and anyway probably won’t let you have any copies if they have written anything meaningful. Good luck John, let us know how you got on, what type of appeal is it???
Vanessa.
“What your CCG do “is an irrelevant statement by them.
What they are supposed to do and legislated to do is FOLLOW the National Framework NF.
No ifs, buts or interpretations or variations.
It is a set procedure and they have to follow it.
It is the law, it is statute.
See you tube, Professor Coleman re Continuing Health Care CHC.
Sadly their statement is not uncommon, when I was told that, I put down a copy of the NF in front of them and said “This is your bible and instruction book combined for CHC and you have to follow it.”
They did not like it bit it is the truth.
Generally the professionals involved in CHC are not accustomed to being challenged, they don’t like it but, that is there problem and they need to get over themselves.
Be firm and dogged in pursuit of the whole CHC process.
Ian G
Ian, don’t worry firm and dogged is exactly what I am being! I have insisted that I see copy of the DST and domain scores and recommendation PRIOR to it being sent to the CCG and that I have the right to put my objections/comments on that DST before the CCG see it and make their decision. As far as the Multi-Disciplinary Team is concerned, if the “Occupational Therapist” turns out not to work for a Local Authority or Social Services, can I reject said DST? I know that the MDT should be examined from a Local Authority perspective so that they can decide whether my Mother was above the legal limit for their care, but if this is not the case, can I refuse to accept that DST? I have insisted in writing, twice that I attend the MDT meeting, but have been refused (in writing) and have, so far, been refused to comment on the DST prior to CCG making the overall decision. The whole “system” stinks!
The best bit of advice I was given was firstly to read Angela’s book ( best £30 I’ve ever spent) read and digest. Highlight, page mark and download guidelines. I went to my mothers multi agency meeting and pulled them apart.
I clearly knew more than them and they allegedly do the job!!
Refer to your documents and insist on everything in writing or e mail so you have the paper trail. I haven’t received anything to state what the initial scores were. I have power of attorney for mum yet I wasn’t even contacted and told this had taken place. The care home manager rang to inform me.
Because of my mothers terminal health the eventual panel did grant continuing care. However mum has been clearly entitled to this for some years and I didn’t know about it.
Just do your homework, record everything and be a nuisance without offending. If you read around your subject I can promise you , you will be better informed than most in the room.
I now have to tackle the issue of claiming the backdated funds they say mum owes.
Any advice anyone? Anything appreciated.
Vanessa.
I am no expert, just gained knowledge over the last 18 months.
Re. the Decision Support Tool (DST),. I don’t know if you have a definite entitlement to see it before it goes for ratification, you may have but I cannot find it for definite within the National Framework (NF), perhaps somebody else reading this can clarify the point.
You should certainly get a copy with your comments on but, when we have received them previously, the comments on it were those that we made as interpreted by the person entering them which can be a totally different thing altogether, and, it was sent after the decision had been ratified.
As we understand it, normally, the NF states that, the Multidisciplinary Team (MDT) decision will be supported by those making the ratification decision so we are all on losers to start with.
You mention legal limit for care.
This is a current and very sore point for us and will form part of our OTHER complaint which will be submitted in due course covering the period December 2015 to present day.
Briefly, out last MDT in the summer, was attended by a Local Authority(LA)/Social Worker/Adult care specialist, whatever they are called, together with 2 other MDT team members including a coordinator.
We informed the CCG of our concerns regarding the meeting within 48 hours, according to the NF there should have been a meeting held with us to discuss our concerns, before the documentation was sent of for a final decision.
That, is in the NF.
It did not happen!
That LA rep made inappropriate comment during the MDT and we made a complaint to the local county council and had a meeting.
We cannot discuss that here for obvious reasons but,. it was eye opening and the outfall from that continues.
The LA rep has a duty to act independently in her own right on behalf of the LA to assess people, she is not part of the tag team from beginning of the MDT, she has responsibilities to come to conclusions of her own
The upshot of that MDT touches on what you say.
The LA rep is “supposed” to prepare a professional, clinical signed dated assessment that identifies whether or not the person applying for CHC is within LA limits for care.
Once that assessment has been done, THEN the MDT go on to discuss the case which eventually reveals whether or not the person is entitled to CHC.
Effectively and practically,. without LA assessment, the qualifying decision for CHC cannot/should not be made as, without it, neither the LA or the MDT know whether or not one or other of them is unlawfully taking responsibility for the persons care.
It is quite clear in the NF and the LA guidance for Social workers/adult care managers.
In our case, NO such report was made, no assessment was made in any shape or form, NONE of the MDT members knew or had ever met or spoken with our friend prior to or during the MDT (contrary to the NF)
In some ways we are where you are.
(We have demanded an Independent Review Panel (IRP), but will have to attend a Local Appeal panel first.
Because or our past jobs, we relish these meetings as all our facts and figures are backed by evidence, particularly from the NF and it is so important that you know that document which is daunting.
If you are sent any letters or comments, go through line by line and find relevant info. in the NF or other guidance that blows their argument out of the water.
We have found this gives good results as it shows up how little some of the alleged professional staff know about the regulations and there requirements!)
We are at the stage where, THINK ABOUT THE INSANITY OF THIS:-
We are going to have a Local Appeal Panel regarding a decision made by a ratified MDT where, the MDT was held initially by people who did not know or had ever met the client AND where the LA had NOT prepared an assessment deciding whether or not the person was within LA limits or not!!!
AND all of that is absolutely and totally contrary to the NF, LA guidance and rules !!
Regarding recording meetings.
There is no law preventing this, we have managed it on one occasion BUT, they do not like it as they are so obviously unsure that what they say is correct AND they get extremely uncomfortable if there are people who are challenging their statements who have equal or, in some cases, more knowledge than they do.
The other unrecorded meetings minutes always lack the detail of what we have said and cherry pick words and statements, generalise, minimise and misreport discussions.
The NF, once you take the time to read it, really is just a process that shows the way the CHC applications should be dealt with.
Again, I suggest you take a copy with you and when you have good reason to disprove what they say, put it firmly down in front of them and politely but firmly and with confidence say, these are the rules, this is your instruction book and bible, you are not following it because………….
At our local appeal panel in a month or two, sparks will fly and we relish it.
Good luck.
By the way, the lady we are doing all this for died months ago but, we will not give up the fight!
Ian G.
Vanessa.
It is prof Clements, not Coleman.
Thank you all for your kind comments and advice. I wish you all well with your cases. I am too confronted with a Nurse Assessor who has prepared a Needs Portrayal Doc based on scantily written inadequate “care” notes, (which I provided as the CCG were too slow in requesting them and the care home changed hand and they destroyed all old notes!). I have had a meeting to discuss the Needs Portrayal (NP) and have provided comprehensive evidence (and provided again copies of all that evidence!) and have given her all my domain scorings and reasons why. She has gone away to produce an updated NP and then she is going to have a Multidisciplinary Team (MDT) meeting with an ex Occupational Health Nurse who will produce the Decision Support Tool (DST) and recommendation and then they are going to send to me at the same time as sending to the CCG. No one involved has ever met my Mother, no one is from her Local Authority (LA) or Social Services (SS) and I am not being given the chance to comment on their domain scores or recommendation. I think I will await the outcome and then challenge them that the DST recommendation cannot be lawful as I have not had the opportunity to comment on it prior to CCG decision and also that an LA/SS representative hasn’t commented as to whether she was outside their legal remit to care for. I just don’t know how people cope with all this, my case has been ongoing since 2012!
My father and I are now at our wits end. I want to give up but he would like to keep going. My mother died in October 2015 and we have had one long fight ever since she was admitted to a care home from hospital in February 2015.
After much pleading on our part and endless maladministration on the part of the Clinical Commissioning Group (CCG) we finally had an Multi-Disciplinary Team (MDT) meeting in July 2015 and a decision declining funding was issued issued on 30th September 2015. We had a local resolution meeting on 28th April 2016, which was a complete waste of time as we just went through the same stuff with the same people, and then finally we had a Local Appeal meeting on 28th September . A final decision declining funding was received on the 13th October.
My mother was bed ridden, doubly incontinent, had a severe heart condition and Alzheimers and was unable to do anything at all for herself. The Local Appeal Meeting agreed to up the scores in two of the domains but still maintain that her needs were primarily social. I will not go into the details of all the mistakes in procedure that the CCG made throughout the whole process.
Now we have asked for an Independent Review Panel (IRP) but the the notes they have sent us say the “Chairs of IRPs will not allow proceedings to be drawn into discussions on points of law”. However our whole case rests on points of law. My mother’s needs were equal to, and in some areas exceeded those of Pamela Coughlan. The CCG refuse to accept this. The fact that her needs were managed successfully does not mean that she did not have these needs.
The CCG also say they have a huge backlog of cases and they say that they will inform us “as to whether or not an Independent Review ” should be arranged and we have to put everything in writing (YET AGAIN!) and fill in a detailed questionnaire. Only then will they consider whether or not our case will be put forward to the next stage.
Firstly, I thought that we were entitled to request an Independent Panel Review. Secondly, what is the point of us having one (assuming it is ever granted) if they refuse to consider points of law? How can they possibly do that?
We had a specialist advocate working with us or we would not have got this far. She was an ex-social worker who really knew her stuff, but sadly she is ill and unable to continue. A relative, who is a barrister (although not specialist in this area) was going to help us to the next stage but there is clearly no point if the CCG refuse to take the law into account.
It seems to me that the CCGs flout the law constantly and I cannot see the point of going on if they cannot be made to take it into account.
Yet another failure of the system.
If it was not so important in all of our cases, it would become boring.
We all suffer the same in that this damned situation takes over our lives.
There is no accountability whatsoever, no fear of punishment, no fear of legislation, no admittance of failure, no sense of moral compass, no regard to the core values of the process, no sense of responsibility, it goes on and on and on and on.
When is somebody in authority in the government going to step up to the plate and bring these miscreant authorities and organisations to book?
Thanks all for your supportive comments. They really are determined to ignore the law aren’t they? I notice that the growing problem arising from this complete split between social care and the NHS is increasingly in the news and being discussed in parliament. Unless this is properly addressed, the whole system will fall apart – correction… I think it already has.
After a long and stressful 5 years, I finally achieved some NHS Funding for my now 98 year old Dad who lives at home with 24/7 nursing care. In what has been a very high profile case, with national and international media attention, the local CCG and Social Services agreed a Shared Funding arrangement last year. However, my Dad is still being asked to contribute to the ‘Social Services’ part of the Shared Funding.
What is concerning me now – and has done for the 5 year period – is that when my Dad’s Nurse/Carer has her daily break of 2 hours, Dad is left in the care of untrained Social Carers who know how to make him a cup of tea but have no knowledge or understanding of his medical condition. Dad has had syncope attacks when the Social Carers are on their own with him and did not have a clue about what to do – neither are they able – or willing – to apply oxygen when he has a COPD attack. The response from the Council Social Services who supply the Care Agency, and the CCG, is for the NHS to train the Social Carers to deal with these and other health issues when they are on their own with Dad. I have disagreed, saying that this is a Health/NHS matter and is ‘beyond the legal responsibility’ of Social Carers to do this (the Coughlan case). The CCG and Social Services do not want to listen to this – importantly Dad is still paying for these 2 hour breaks each day as it is still being sourced as ‘social care’. Am I right in my thinking and if so what should I do next? Many thanks. Mike
I am new to this site and it has been a god-send. My mum is 87 in the latter stages of dementia ( although not end of life stage) has epilepsy, is doubly incontinent, has trouble swallowing and now has to be turned in bed as she is unable to do this herself. She has been cared for at home for the last five years and has contributed financially to this but she is currently in hospital and I have asked for a Continuing Healthcare (CHC) assessment. The discharge coordinator told us she does not qualify for CHC and will only receive NHS Funded Nursing Care.
She said only people with severe needs qualify for CHC, like those without an oesophagus or who have had a tracheotomy! I know she is talking rubbish. I asked for a copy of the Checklist which I got and recommends mum does go to full assessment- so the coordinator was either lying or had not seen the Checklist when she said mum was not eligible. Having looked at at the Checklist in some domains they have given her a rating but left the evidence bit blank. Should I challenge this? They clearly haven’t completed the paperwork to the required standard but I am wary if I rock the boat at this early stage they may redo the Checklist and decide she shouldn’t go to full assessment just to spite me because I am being difficult. Mum has scored 5Bs on the checklist so does go through to the next stage. Any thoughts or advice greatly appreciated.
Denise,
You need to start looking at all needs and their complexity and/or unpredictability and/or intensity along with any obvious requirements for continuity of care. Create a list of what is actually involved….. Not just that, lets say, ‘they are doubly incontinent’….. You need to record all of the steps involved in providing care in such circumstances. When the assessment is undertaken then you will be equipped to argue every time the assessors try to minimise each and every need.
We had 1 Severe and 6 Highs at the Decision Support Tool and were refused funding. On the Mobility domain, weighted as High, we are told by the Multidisciplinary Team that Severe is for people who cannot use any limbs thereby avoiding a second Severe weighting. Can this be correct? Is there a true definition of Severe or should there be a more liberal interpretation of the descriptor?
Our Mum is chair and bed bound and has not walked for 2 years.
I had exactly the same thing said to me at our Local Appeal by the nurse on the panel when I explained how carefully my Mum requires to be positioned – she is bed bound, has severe rigidity and pressure sores. They would only opt for the “top end of high” – clearly scores against descriptors have been pre decided in order to downgrade domains – I don’t see anything in Framework which allows this
In the unlikely event that anybody having issue with NHS or Social Workers professionalism or competency, do not forget that apart from the Healthservice Ombudsman there is also a Local Government Ombudsman that deals with that type of issue and that can also be done on line.
HELP please! What a mess! Partner (aged 39) suffered brain injury in Oct 2015 and has substantial support needs. I’ve been full-time carer since her discharge from hospital in Mar 2016, unable to work due to her needs. She’s received no support (whether Local Authority or NHS funded). I do it all on my own. She’s now been awarded joint-funded care. We were not involved in any Continuing Healthcare screenings except for the most recent one (apparently there were ‘a few’ in 2016), her consent for earlier screenings was not obtained, her capacity for earlier screenings was not assessed and we did not receive copies of earlier Checklists. We made a formal complaint and the Health Trust acknowledge that not only have they failed to follow proper procedures but they don’t have copies of earlier Checklists. My partners’ care and support needs haven’t changed one jot so we want to challenge earlier decisions. How do we proceed? Do we ask for copies of documentation they have when she was screened? Do we request a Retrospective Review? Do we escalate the complaint through the Health Trust’s complaint procedure (Local Resolution Meeting) and then to the Parliamentary & Health Service Ombudsman (PHSO)? My partner lacks capacity and I’m not sure what to do. Any thoughts? Thank you for reading. Jim
I am no expert other than having experience myself of a retrospective claim for my Mother dating back to 2009. Most important thing for you to do is to contact your local CCG and insist on an assessment being carried out now so that you can ascertain whether she is entitled to full NHS Continuing Healthcare (CHC) (she would have an initial checklist done, then if she qualifies a full assessment by a Multi-Disciplinary Team). With regard to her previous care, you should insist that they carry out a retrospective assessment of the total care period, and if they have already done so, then insist that they provide you with the completed Checklists and copies of any Needs Portrayal Documents or Decision Support Tools (DSTs) that have been completed. If they cannot provide these, then they have not followed correct procedure and you can insist on a review. You should have been asked to attend any assessments that were carried out as next of kin or as your partner’s representative. Do you have Power of Attorney, if not you should consider sorting this out so that you can act on your partners behalf, although at the end of the day she can have any close relative or friend act as her advocate I believe. First port of call for you though is to contact the relevant CCG and ask for an immediate NHS CHC assessment to be carried out and that you want to be present and to ask for all backdated copies of Checklists/assessments etc. Also, start taking notes of your partner’s care needs (daily if possible) and start gathering any information from any professionals or GPs that are involved in her care. Good luck and keep us updated.
Jim, yes sounds very similar to my experience, no mention of CHC when she was discharged from hospital, checklists done (one without even informing us and no record of any visit to my Mum in her care notes or care home visitors record), after asking for copies of said checklists they appeared 14 months later (computer generated, unsigned and with a date a year after the assessments were done!). After many years of asking for the whole period to be reviewed and them refusing because they felt their administration was “robust”, they finally agreed to pay an independent nurse assessor to review the whole period in question. I am currently waiting for a revised Needs Portrayal doc so that I can comment on it before it goes to the CCG for final decision. My advice to you is do not give up, keep at it, if you feel your partner is requiring more care than Pamela Coughlin (look her up on the internet) then keep going. I feel that I owe it to my Mum that my Father’s hard earned £200,000 should not have been paid to the Nursing homes, but should have been paid by the NHS as she definitely had a healthcare need and her needs were just not social needs. Good luck and keep in touch. Vanessa.
Jim, it is shocking that you have not had more support during such a difficult time for you. I am sure that you would have wanted to be the main carer for your partner, especially during the crucial 6 months following her injury, but you should have been given more financial support and help with care. A retrospective review is definitely what you require, but don’t hold your breath on it happening quickly, my Mother’s case is 2009-2013 and I am still hanging!! All the best, this site has been an absolute Godsend for me for information and support, I suggest you read as much as you can from all the links that Angela Sherman has so kindly provided for us. Kind regards, Vanessa.
My husband is in hospital and has just been allowed nursing care funding of £156. Not total Continuing Healthcare (CHC).
He is bedfast, doubly incontinent, needs feeding has a pressure sore, in totally confused, has at Christmas been under a Section 2 for aggression. Is on one-to-one care in hospital due to falling out of bed. His dementia is such that he doesn’t know his family.
The assessor played down everything in the assessment, for instance saying that he wouldn’t need one-to-one care in a nursing home. The only contribution the ward nurse made was to say could I cut his nails as she wasn’t allowed to. Now the only home that the social worker could find won’t take because they don’t do one-to-one care.
There is no choice and we were told the hospital wanted him out the day after the assessment. The social worker was off 2 days last week and is only working 2 days this week and is then off for 2 weeks. I feel like piggy in the middle.
I am no expert, just experienced 5 years of battling to get CHC for my Mother, still having a retrospective review of her care. Did you attend the checklist assessment for CHC and did you receive a copy of that assessment and reasons as to why he was not put forward for a full assessment for CHC? If you were not given a good enough reason for not being put forward for a full assessment, I would ring your CCG and formally request a full assessment. In the meantime gather as much information about your wife, ask for a full set of hospital notes and insist on being in attendance at the assessment process (you have every right to attend). I would suggest you do not discharge your husband from the hospital until you have had a full CHC assessment, you are entitled to ask for this. I suggest you read as much as you can on this website, possibly get the good book suggested to help you through the whole system. Stick at it and do not be fobbed off, it sounds as if you have a very good case for having all of his care paid for via NHS CHC.
The assessment was the full CHC assessment. The CHC assessor played down every domain. Then he said about only having partial funding. Have not heard from social worker who is organising nursing home, since the only one suitable turned him down (too many complex needs) and she’s only there one day before she is off on holiday. There seems to be stalemate.
The saga continues.
The social worker said there are now two more nursing homes which might accept him.
I think they may have had to raise the money they will pay. However one on the last 3 inspections, had one inadequate criteria and the rest ‘need improvement’ I don’t think that will do. I’m trying to visit the other one (all good on last inspection). As the social worker is going away for 3 weeks, and her last day is tomorrow, she is trying to bully us into doing things too fast
We have a Decision Support Tool (DST) meeting next Wednesday for my Mum. At the moment she has full Continuing Healthcare (CHC) funding. Since the last assessment last March, she had a very bad fall in the care home and broke her hip. Subsequently she was handled badly by a senior member of staff (neglect case) which exacerbated the problem resulting in her being completely wheelchair bound and prone to falls if she tries to walk.
As her Alzheimers has also deteriorated this is a daily problem. She will not use a walking frame so staff have to be on the alert for her to try and leave her chair. I rang the manager of the home last week just to check that they were aware of the meeting and she said we will loose the funding because her previous aggressive behaviour has somewhat mellowed now she is immobile. At the last meeting she scored 2 severe marks in Behaviour and Cognition, 1 high in Drug Therapies and Medication, 3 medium, 2 low and 4 no needs, one of which was mobility. She was very agile despite having a very crooked spine and being in a lot of pain. I think the Alzheimers has taken away her feeling for pain as she was on strong medication for years for that condition. What we are worried about now is how do we present the case for her mobility to be considered as high. Last time ,although she had no needs, her fall risk assessment said 13 high risk. She also suffers from virtually no vision in one eye and limited in the other. While her behaviour has definitely reduced as a lot of her old problems involved interfering with other residents and being very aggressive to her carers, especially during personal care I don’t know if this is still happening as I haven’t actually spoken to her nurse to find out if this has improved. I do feel very anxious about the upcoming meeting, as the assessor we have is very much against Mum getting the funding , always lowering the grade but we have managed to dispute this successfully up till now. Also we’ve had a problem with the carers in the past not keeping good notes about all the daily incidents as evidence. The manager told me that there is a new lady who has dealt with other residents and has passed almost everyone she assessed. Much to the amazement of the staff. It does seem very unfair that such an important decision can be so varied due to the person you are lucky or unlucky to have handling your case.
A change for the better: !!!!! Mmmm
Nearly a year on after out first “Multidisciplinary Team meeting (MDT)” with only a nurse assessor and my wife present (how little we knew then) to this invite today in the inbox:
The MDT members have been confirmed as:
A– RMN, CHC assessor
B – RGN – CHC assessor
C – Social Worker (LA)
Z – Acute Clinical Nurse Specialist in Parkinson’s Disease
Y– Occupational Therapist
X– RGN, ward nurse
Any thoughts or comments around the CCG getting to choose as many members of panel as they like , should all MDT members be Continuing Healthcare (CHC) trained ?
MIL will by the date of the MDT meeting been FFD for over a year in the opinion of the NHS trust who have threatened to evict on two occasions but back off when told the defence will be Coughlan they really don’t want that fight before a judge.
This number of specialists does mean a better constituted Multidisciplinary Team (MDT) in accordance with National Framework (NF). As four of domains are related to mental health then Registered Mental Health Nurse (RMN) is essential – I have had issues over this. Parkinson’s nurse can be invaluable as a friend of mine found with her Dad – they are properly able to deal with issues of medication which by itself can be a priority. Yes I found this number of people daunting hence my use of solicitor and advocate because as relatives we are emotionally involved to the point where it becomes difficult to make all the points – a professional keeps them on line in accordance with law and framework
Yesterday we had a second assessment in 6 months for my mother-in-law.
We have appealed the first assessment and that could apparently takes months to be heard, although we did have a meeting with the CCG a couple of months ago who appeared willing to increase scores in two or three domains. Our appeal also covered process errors, some of which we believe make the outcome flawed / invalid.
So, we were advised to ask for another assessment which took place yesterday. The MDT was made up of a CCG assessor (and observed by a trainee) and no other healthcare professionals attended. Social Services had been invited but did not attend. At the end of the meeting the CCG assessor told us that she would be recommending a non-eligible decision, how can the opinion of a single professional who had never met my mother-in-law before be valid? Shouldn’t this be the recommendation of an appropriately formed Multidisciplinary Team (MDT)? Incidentally the majority of scores for my mother-in-law are high and moderate (possibly one severe for behavior if the impact of medication is successful at managing her dementia) and there is only one domain with No Needs. Any help and guidance on where we go next much appreciated please. Thank You
Well that was fun my first Multidisciplinary Team (MDT) meeting in 12 months of this fight; my wife went to the first one ( only with nurse assessor). This time a year on they put on a show…….
2 nurse assessors (NA) CCG 2 local authority (LA) social workers (SW) 2 nurses one Occupational Therapist (OT) and a dietitian….
The SW hasn’t met my mother in law (MIL) since last Sept and had an outstanding safeguarding complaint against her (raised by the LA itself) at the time of the hearing.
The OT who had never got MIL out of bed since admission 14 months ago prior to which she was up every day…. the dietitian who is currently being investigated by the hospital who have brought in an external consultant with reference to MILs weight loss and multiple bouts of dehydration; and the nurse who before we had even heard of Continuing Healthcare (CHC) had a complaint from the family around allowing a patient 91 with delirium/dementia to give informed consent to a non urgent surgical biopsy with of course no supporting paperwork.
Forget to mention Speech and language who sent us the report they were planning to use at what they thought was a best interests meeting clearly no training or understanding of the legal implications of being on a MDT.. oh and then failed to attend meeting.
So all set for a fair helpful and unbiased enquiry into whether or not MIL had needs greater than Pamela Coughlan.
From the off NA was in charge despite being told her voice should only be one of the MDT she carried on with running the Decision Support Tool (DST) meeting. The OT and dietitian were rabbits in the head lights. Had they been trained? NA stopped that dead in its tracks …. Had they heard of Pamela Coughlan? ….were not talking about that…..
We are only looking at the last few weeks in assessing her needs. One of the nurses had to leave before the end of the meeting; she’d only been booked till 4pm…. Both nurse assessors stated the scores then OT and dietitian and NHS nurse one all agreed without looking up from their blank copy of DST. LA were a little better being deferential to the NA to the point of obsequiousness.
Explained to team who Pamela Coughlan is and what the appropriate question is but NA was straight in with its all about the framework and the DST. So all set for a summer of dispute resolution and appeals. Have also started preparing a complaint to the Serious Fraud Office will let you know how that progresses over the coming months and years.
Richard, your last paragraph says it all !!! Afraid it does not get any better at appeals. They will hear what you say, ignore it, write a completely incorrect report on needs etc then tell you there is no eligibility. At retrospective stage and nearly 4 years later, it seems Court is the only way to get any payment.
My husband has not been awarded funding apart from nursing care of £158 a week. I was told that none of the descriptive words applied to him. So why were seizures and aggressive bouts not seen as coming under the ‘unpredictable’ title? She argued he had only had 2 in 4 months (one bout was 5 seizures in one morning) and needed to have them every day to be ‘unpredictable’ But surely that would come under ‘severe’ or ‘intense’ title then. He has vascular dementia and parkinsons and is immobile. Is it worth appealing. Not allowed to write on the DST form…she wanted it back! His scores included 5 high and four moderate.
I’ve just attended a gruelling Multidisciplinary Team (MDT) meeting to complete the Decision Support Tool (DST). I would like help with two questions if possible please:
1. Should they have contacted hospital consultants, doctors etc. for written contributions about my dad, even though he is not receiving treatment from them at the moment, but does see them to monitor his Lewy Body Dementia and Urological problems. They were adamant they did not have to do this (there were two assessors backing each other up and a social worker who just sat there). They also commented it made no difference to his ‘needs’ anyway. They threatened to abandon the meeting if I insisted on obtaining the information and would have to start again. The diagnosis of Lewy Body was not on his notes and no notes about the risk of his urethra narrowing and risks of blockage, which would have come from these specialists. All evidence was taken from the care notes which had loads of things missing, as carers don’t often report relevant occurrences to the nurse-in-charge to write up.
2. At the end I asked for a copy of the completed paperwork as your advise:
‘Ask for an immediate copy of the DST for your own records. (If the assessment is taking place in a care home or NHS office, there may be a photocopier nearby.) ‘
The nurse assessor said I would have to contact the administrator in her office for a copy after it is scanned. I then asked if she could request a copy for me and she said no because of ‘data protection’, I would have to do it myself.
There was then talk about LPA (health)…..it is being processed at the moment. I said it was a joint LPA with my brother, but it is structured so that we can act separately. They then began to pull faces of doubt. Should they have given me a copy straight after the MDT when I requested it? (photocopier available)
Really don’t know where my I stand on there two issues. Thank you :0)
We were rushed through an Multi-disciplinary Team (MDT) on 28 February 2017 by an aggressive Nurse assessor who would not allow us to make comments . She said we would see a copy of the DST prior to it going to panel. Big fat Lie. We never seen it again until after the panel said no on 25th May 2017. We have been fighting now since 2009 after yet another flawed MDT removed Continuing Healthcare (CHC) from son after 27 years of meeting the criteria. ‘It’s a miracle he has recovered’, no he has not recovered his needs are still what they were. GP asked to refer to dietician last Oct – did nothing he has now lost 7KG and has a weight of 43.6 KG BMI of 16.
12 section no other significant needs noted by nurse assessor and blank where our comments should have been noted.
Make sure whatever the reason they give you see the DST before they leave as they lie and twist the evidence so you do not meet the criteria. Personally I hope the social worker and nurse assessor either lose their jobs or get sent on intensive training
We were told yesterday by the CHC worker that we were not able to use evidence from before 9th July to complete the DST…Is this true? (relative has been in hospital since 4th April)
Thanks for all your information but I now realise All along the process the Local Authority and the CHC have not adhered to the Guidelines and Law. Unfortunately I do not have the financial resources to fight.
I’ve posted on another thread on your site concerning my son’s CHC review which took place in June .
He is severely Autistic with profound learning disabilities and epilepsy. He is currently fully CHC funded
The nurse Assessor conducted the review like it was an Assessment. The Nurse Assessor recommended that my son be reassessed and the CCG panel agreed. No explanation as to what significant changes had occurred to trigger a full MDTmeeting have ever been given .The CCG panel are using the MDT to determine whether or not any change has occurred. I have been advised that they cannot do this .I made a formal complaint the following day regarding the manner in which the review was conducted and the recommendations made .
I am currently waiting for a decision .The first deadline to conclude their investigation has passed ,this should have been September 20th, no explanation for this missed date was given .
I now have to wait until the end of this month for a decision .
I still have no explanation why the recommendation to reassess was made ,despite several emails requesting this and I still have no idea why the original date of September 20th was missed and no idea what stage the investigation into my complaint has reached .
The complaints coordinator simply ignores these questions, informing me that under their statutory guidelines they have 6 months to investigate.
Anything else I can do ? Anything else they should be doing?
Any advice would be very welcome.