PART 2 – Revealing Insights From A Continuing Healthcare Nurse Advocate…

PART 2 – Revealing Insights From A Continuing Healthcare Nurse Advocate…

This is the 2nd part of an article from Nurse Andrea (not her real name) giving examples of some NHS antics and flawed assessments.

If you missed Part 1, you can catch up here: Part 1 – Revealing Insights From A Continuing Healthcare Nurse Advocate…

No:7  Underscoring the Care Domains and the 4 Key Indicators when completing the Decision Support Tool (DST)

Andrea: “When completing the Decision Support Tool, it is very clear that, despite all the efforts in amending the National Framework, professionals are interpreting the descriptors in the 12 Care Domains in different ways. It is all too subjective, and it really depends on who has been appointed by the CCG on the day to conduct the assessment.”

Scenario: “An 85 year old gentleman was someone who had always been of large build and his BMI was assessed to be in the obese category. Over a period of 3 months he had lost in excess of 2 stone in weight, but his BMI remained high. The care facility was nutritionally enriching his diet (adding cream, butter etc to meals), were providing snacks in-between meals, and reminding him to chew and swallow his food. Whilst he had the ability to feed himself (provided the food was prepared for him), staff were required to assist as it was taking an increasing amount of time to eat his meals (because he would forget what he was doing). They were spending the vast majority of the day taking food to him and prompting and assisting with his intake. Despite all this, he continued to lose weight.

The nurse argued that his needs met the ‘No needs‘ descriptor in the DST. Her rationale was that he was still eating and drinking and could feed himself if he wanted to, so his needs were being met.

After further discussion she then decided that perhaps a ‘Low’ level of need may be more appropriate, as after all, he did get assistance from the carers.

When I questioned her about the significant and continuing weight loss, she said that was irrelevant as he was still in the obese range of BMI, and that in her opinion he was not nutritionally at risk.

I pointed out to her that this man was not intentionally losing weight. He was not on a diet, and there was nothing documented by health professionals which suggested there was a need to lose weight. In fact, he had been referred to the dietician who had suggested enrichment of his diet!”

Andrea explains that the descriptor of ‘High’ needs, therefore, was appropriate as it states: “Nutritional status at risk and may be associated with unintended, significant weight loss”. This patient was losing a tremendous amount of weight despite all the additional efforts to supplement his diet and maintain his weight.

“When it came to discussing the 4 Key Indicators in conjunction with the food balance charts, not only was CCG’s assessor grossly underscoring the level of need for this Care Domain, but she did not feel that the fact he was being fed approximately every 30 minutes was an intensive level of support!”

Our comment: The above is a typical example of what we often hear from families across the country and comes as no surprise to us. The assessment process is entirely subjective which allows inconsistencies depending on the CCG and the experience (or ‘agenda’) of their appointed assessors on the day. Such subjectivity facilitates the opportunity for some CCGs’ assessors to underscore a patient’s needs and so directly affect the outcome as to whether CHC Funding will be recommended or not.

In a situation like Nurse Andrea’s above, it can be very frustrating to see that the appointed CCG assessors clearly don’t understand the patient’s needs and the correct application of the National Framework, or else appear to deliberately turn a ‘blind eye’ to intense, complex and unpredictable healthcare needs and play them down to affect the outcome as to eligibility for CHC Funding. It smacks of incompetence at its lowest level, or more sceptically, deliberate foul play at its worst – purely to protect the CCG’s financial budget.

No:8  Problems with incomplete care records

NHS Continuing Healthcare assessments are evidence-based.

Unfortunately, the necessary evidence is not always provided within the care records. These omissions could be deliberate or simply due to a lack of time and resources.

Nurse Andrea says, “The most common occurrence of this is the Domain for ‘Behaviour’ and which frequently raises the most arguments when completing the DST.”

I visited a care facility to carry out an independent assessment on a lady (let’s call her, ‘Mrs X’) who had been assessed by the CCG as having ‘Low’ needs for Behaviour. On examination of the care records, it was documented that during the first three months in the care facility, she had hit, scratched, bit, and pulled the hair of a carer when trying to deliver care three or four times a day.  When taken to the dining room she had thrown drinks, food and cutlery at other residents, screamed out throughout the meal, and generally disturbed other residents. She was reviewed by her GP and by Mental Health Services, and had her medication titrated in an effort to manage her behaviour and reduce her symptoms. After some five months there were no incidences documented. However, I noted on one day her records said, “she’d had a really quiet day.

I was in an adjoining room reading the records and gaining evidence prior to meeting with this lady. There was a lot of screaming and what sounded like objects being thrown around a room. I asked the nurse who was with me, what was going on. She said, “Oh that will be Mrs X. She’s always like that.” I pointed out that there was no documentation of these incidences and no evidence of further referral for advice or management. She responded that they have got used to Mrs X. Mrs X was already in an EMI (Dementia Behavioural Unit) so there was nowhere else for her to go.”

Andrea says,“I understand that if the staff continued to document her behaviour and every single episode, they would be there constantly writing and would not have the time to deliver her care. However, for the purposes of assessment, unfortunately, this lack of critical evidence and documentation will not help Mrs X’s case to get CHC Funding.”

Our comment: Generally speaking, if an individual’s daily needs are not written down in their care records in ‘black and white’, then it can become an uphill struggle to try and argue the case for eligibility for CHC Funding without written corroborative evidence. The absence of written documented evidence of healthcare needs just makes it easier for the CCG to reject funding.

No:9  Misusing the Fast Track Pathway

“One of the most widely misused tools is the Fast Track Pathway tool. This tool is used to fast track someone and get quick access to a package of care from the place where they are (most frequently hospital) to the place they ‘want to die’.

It is supposed to be used when ‘an appropriate clinician’ has assessed an individual to be at ‘end of life’ and have a rapidly deteriorating condition. Hospitals are under-staffed and there are not enough beds for the acutely unwell.  Once an individual has reached a point in their care where there is nothing acute that can be done for them, then they are sent out into the community for ongoing care.

Some clinicians are regularly telling families that their loved one is being ‘fast tracked for NHS Continuing Healthcare’, and to go and find a bed in a care facility, and not to worry as the NHS are picking up the bill. However, what they are not telling people is that, following discharge from hospital they will be reviewed again in 3 months and undergo another full CHC assessment to see if the package of care in place is working. In a large proportion of cases, if the individual no longer has a rapidly deteriorating condition or does not have other healthcare needs that meet the criteria for ongoing NHS Continuing Healthcare Funding, then CHC Funding will be withdrawn – leaving the individual to pick up the ongoing bills for their care home fees.

The majority of those fast tracked are placed in aesthetically pleasing care facilities, chosen by families as a final resting place for their relative. Some care homes are priced out of reach, which means that the family have to find an alternative home in a more affordable price range to relocate their very frail and vulnerable relative. Often this upheaval is very unsettling and causes them (and their family) great stress and anxiety, at the prospect of being uprooted and moved.” 

Our comment: Abusing the Fast Track Pathway has become an effective and simple way for the NHS to discharge patients into a care facility and unblock hospital beds. Families are no doubt relieved that CHC Funding is granted for their frail relative who is at at ‘end of life’. But, if CHC Funding is immediately withdrawn following reassessment at 3 months, it can cause huge distress, financial worry and resentment.

No:10  Best Interests decisions

Andrea says, “What we have to bear in mind here is that the majority of residents in a care facility may be frail and elderly, and unable to make these choices for themselves.”

A ‘best interests’ decision is made on behalf of an individual by a team of professionals, for example, in circumstances where care cannot continue be delivered in the individual’s own home – perhaps because they need 24 hour care. So, if these professionals have made a best interests decision that the individual has no choice but to go into a care facility, then why do they not have a health need and why should they have to pay for their care?”

Summary:

Andrea: “Many individuals do not understand the CHC process and do not realise that their loved one may well have been inappropriately assessed by a process which was designed to be consistent and robust, open and transparent for all, and to make healthcare easier to access – a system which delivers healthcare at no cost to the individual by an NHS service.

However, the National Framework remains open to individual subjective interpretation, and is a barrier to an individual receiving the free healthcare which they require as a result of long-term medical conditions which have given rise to ongoing healthcare needs.

It is confusing, not only for individuals, but also for the many professionals who have been commissioned to impose it. It is time for change and a more prescriptive, objective clear concise and fairer process.”

CTBD wish to thank ‘Andrea’ for getting in touch and setting out her forthright views and for sharing some of her experiences with us.

If you are going through the NHS assessment or appeals process and want help, buy our book, “How to Get the NHS to Pay for Care” or contact us directly on 0161 979 0430 or visit our one-to-one page direct professional support.

41 Comments

  1. stella Balsamo 2 months ago

    I strongly believe CHC funding should be scrapped as it is poorly administered by callous CCGs. The nurse assessors are clinically incompetent. The word “care” should be removed from CHC. It has nothing to do with care or need and everything to do with gatekeeping resources. If they scrapped the system and had a non means tested social care funding system we could save thousands on the pointless CCG bureaucracy The PHB is being pulled for my mother’s care for no rational reason. The CCG flouts the framework at every point. Of course I will go through the appeal process. The stress of dealing with this while my mother is in the active stage of dying is horrendous.

    • carol blythe 2 months ago

      Bravo Stella
      It a system you are set up to fail and has only been initiated to keep bureaucrats in highly paid jobs. Thus reducing the amount of money that could be used for social care

      • Andy 2 months ago

        You’ve hit the nail on the head. It has to be deliberate.

      • Jenny 4 weeks ago

        Would Free Social Care for all actually solve the issue though? It seems to me the demographics ( known to governments of all colours) are stacked against the funding available from tax raised at levels people will vote for. Coupled with people living longer with long term conditions, and neo natal care improvements, there is simply too much demand on too small a fund if cash. The Daily Mail would add immigration into the equation too.
        The solution will only derive from a combination of greater personal responsibility for our own health, increasing privatisation of the NHS, an acceptance that there isn’t a pill for every Ill, and that quality of life is as important as quantity. Until we get to grips with the fact that the NHS can no longer provide cradle to grave care free of charge on current levels of taxation for so many, the NHS will continue to maladminister and mis classify as many health need cases as social care it can. Many of the CCG and CSU staff believe their inaction or maldministration is “Saving the NHS money” when in fact they are acting unlawfully, and costing the organisation thousands in interest payments and restitution payments annually. It’s this scandal that should be pressed home, rationally, to anyone interested and responsible for public expenditure.
        In the meantime, the CCGs and CSUs will interpret The National Framework at will, and do their very best to keep people in ignorance or wear them quite literally into the ground.

        • Michelle Wetherall 4 weeks ago

          Hi Jenny,
          I read your post with interest. I firmly believe this is a big an issue as Brexit has been, yet successive Governments seemingly don’t want to tackle it. I know I have commented lots of times about how does the NHS survive in it’s current format. It can’t! and for all the reasons you’ve eloquently outlined. The current crisis with Covid-19 will test the NHS and Social Care in the coming weeks and months. The Government reassures us that the NHS can cope, but can Social Care? I think the whole country is waiting to see how our beloved NHS copes with this crisis. I think this could be a turning point.

          • Jenny 4 weeks ago

            Quite so!

  2. Meggie 2 months ago

    Do any of the very knowledgeable people who comment on this site know much about the PHSO?
    Although my lovely Dad received CHC Fast Track funding in his final weeks (not of course without all the usual errors, misinformation and appalling behaviour by NHS staff) he was never assessed for CHC prior to this. This was despite repeated requests for a full CHC assessment. I felt I was banging my head against a brick wall. He had passed a long-fought- for Checklist but a full assessment MDT/DST was simply refused while the CCG insisted on waiting indefinitely until he was “optimised”.
    After Dad died I complained formally to the hospitals, the local authority and the CCG (about failure to assess for CHC and maladministration of every aspect of the CHC process in addition to poor nursing care). They all pretty much said that they were sorry I was upset/dissatisfied but everything had been done properly etc etc. It took one hospital more than a year to send out this woeful response.
    I passed my complaints to the PHSO and I confess that I genuinely, if naively, believed there would be an investigation and a simple acknowledgement that there had been maladministration and it was wrong and should not have happened.
    After two years of delays and misunderstandings by PHSO staff I have been told that my complaint has been closed. A senior caseworker admitted it was because inexperienced staff who were part of the Joint Working Team dealing with complaints that included both a local authority and the NHS had simply failed to understand the CHC parts of the complaint. Their decision not to investigate and to close the complaint cannot, I am told, be overturned.
    How can the PHSO make a mistake in looking at a complaint and refuse to rectify this mistake? How can the PHSO knowingly refuse to investigate a valid and serious complaint of maladministration? This is their job. It is the reason we have an ombudsman.
    After everything that happened and the way my Dad was denied his lawful right to be assessed for CHC I am struggling to cope with an overwhelming feeling of helplessness. Nothing I did could make a determined CCG carry out a CHC assessment and now it seems nothing I say will make the PHSO look into what happened. I am in the unbelievable position of being told my only course of action is to complain to the ombudsman (chairman of the PHSO) about the PHSO.
    The NHS remains untouchable, a law unto itself. It can do or not do whatever it likes and patients and their families are powerless. Now it seems the ombudsman can do as it likes too.
    If anyone has any experience of the PHSO that they can share I would be grateful.

    • Michelle wetherall 2 months ago

      Hi Meggie, I understand your anger and frustration. I have had dealings with the PHSO following the neglect that my late father received whilst in a CCG 20 bed initiative Care home ( basically a step down bed from hospital whilst dad was being assessed and receiving rehabilitation). The PHSO found failings with the care home but not the NHS, even though the NHS were commissioning the 20 beds.
      The nursing home had to write to me and apologize for failing to have strategies in place to prevent my father from developing pressure sores and for failing to follow the directions of the NHS dietician in order to prevent further weight loss/malnutrition.
      The PHSO criticized the nursing home for the poor complaints procedure but not surprisingly found NO failings with the NHS. Like you have said Untouchable!
      I was angry that the PHSO found failings with the nursing home but not the NHS even though both were linked to my father’s care.
      I escalated it to Management level at PHSO but got no where.
      It seemed they were happy to agree that the nursing home was negligent but not the NHS.
      You can draw your own conclusions.
      It wasn’t entirely a waste of time because I am now resurrecting my complaint about the NHS…..now that I have the result of the PHSO and a positive IRP outcome and have recovered my late father’s fees.
      My opinion is that the PHSO doesn’t have the authority/power that the public believe it has.
      If you believe you have a strong case, then perhaps you should consider engaging the services of a law firm. If you firmly believe there is a case of clinical negligence then there are no win no fee law firms out there. They are hard to come by, but it’s worth investigating this option, especially as you’ve exhausted the only options open to you at present.
      Good luck!

  3. barry 3 months ago

    Has anybody had dealings with CHC P H B (personal health budget) we had a package review over 28 days ago and are still waiting tor the results then out of the blue they phone to say they want to come and discus PHB are they waiting to see if I go-ahead with P H B before the let me know the outcome of the package review.
    Any help would be great
    Barry

  4. Tom 4 months ago

    Hi MW and all

    Hope everyone is doing ok given the difficult circumstances.

    Please can anyone help or share experiences?

    My Father was granted the continued care and 1-1 Thankfully, but we are now in a position where the borough have decided to do monthly 1-1 reviews now

    It is not clear to us the relationship between CHC and 1-1 how/why they both get reviewed separately.We have asked them recently again for a 1-1 policy and been told they are working on one. I asked previously in May 2019 and the clinical lead nurse replied to direct me to the below NHS CHC framework. The framework does not refer anywhere to someone in receipt of 1-1

    Question – Please can I be sent any specific CCG policies regarding the process and procedures to be followed when an individual receives CHC including the review process ie an operating policy and anything regarding individuals who receive 1-1.

    Answer – May I refer you to the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care October 2018 (Revised) which can be found on line. The CCG’s Standard operating policy is currently under review and I am unable to provide this to you. Information about reviews can be found in the framework from page 52 -54

    However, if all they have is the framework and that is what we are being directed towards then surely the same rules apply? ie CHC reviews and 1-1 review:

    181. Where an individual has been found eligible for NHS Continuing Healthcare, a review should be undertaken within three months of the eligibility decision being made. After this, further reviews should be undertaken on at least an annual basis, although some individuals will require more frequent review in line with clinical judgement and changing needs.

    182. Bearing in mind the minimum standards set out above, a guiding principle is that the frequency, format and attendance at reviews should be proportionate to the situation in question in order to ensure that time and resources are used effectively.

    So how is having a monthly 1-1 review in accordance with 182?

    I was wondering if anyone had any personal experiences of this because the borough ( not sure if I should say who?).
    and if anyone had any information on the 1-1 review process. We don’t know the criteria they are going by and so far just been told there will be 1-1 reviews but haven’t been supplied anything about the process.

    Many Thanks

    Tom

    • Jenny 4 months ago

      A bit confused by your terminology Tom. 1 – 1 relates to care or to the Review? In my experience relative had a review of CHC well after a year of DST and eligibility, so not after 3 months as per National Framework. It was conducted by a single nurse assessor acting on behalf of the CCG, but the letter sent strongly suggested we needn’t be there, and if we postponed it would go ahead anyway! They intended conducting the review with relative despite no capacity and Powers of Attorney in place. I immediately wrote back pointing out the flaws in those proposals so they were aware it wasn’t another opportunity to roll the case over.
      You refer to the Borough? Was this started by a Care Act Review? Surely this should be a NHS matter if CHC has been awarded?
      The review was conducted by a single nurse assessor with a helpful care home manager. sitting round a table. We went through the domains and compared it with the recent records. I’d prepared draft submissions and scores as I’d done for the DST. The Nurse was reasonable and we progressed through the process in around an hour. CHC remained in place. Relative died a few months later.
      Nurse had never heard of the need to publish a rationale for CHC decision, nor a care plan produced by the CCG against which the patient’s needs could be met. Both are in The National Framework – but presumably were seen as optional.

    • Michelle Wetherall 3 months ago

      Hello Tom,
      Sounds like they are operating a system that is not in line with the National Framework.
      I haven’t experience of this, as my late father did not have 1:1 care in his nursing home.
      However, if I was faced with monthly reviews (clearly with the intention of removing the 1:1) I would
      be making my complaint to the CCG, with the evidence you have already told us. Remember as your father’s attorney/advocate you have a right to be part of any review process. So essentially you could be meeting with CHC representatives every month! So attending any review process on a monthly basis is absurd. A review process should take place 3 months after CHC has been granted, with the intention of now making sure that the care in place is appropriate and then 12 monthly. Take a look revised NF Oct 2018 which Page 52 para 181-185 which says the review is more about whether the care remains appropriate and not about eligibility.
      Remember the NF tools are underpinned by legally binding directions and standing rules and any action a CCG takes in removing any funding or element of care is illegal.
      You have read the NF and have good solid evidence to hand, so submit your complaint and tell them how angry you are about monthly reviews. Tell them you want to know why your father/you are being subjected to a monthly review and what part of the NF they are using to enable this to be lawful. Highlight the fact that should they be thinking of withdrawing the 1:1 care, you will be pursuing a course of action against them.
      Don’t ask them. Tell them!
      I’m sure CTBD or other readers will correct me, if I’m wrong?
      Good Luck.

  5. Karen Pollen 4 months ago

    During the last six months of mums life two separate care teams ( one in hospital and one in the community) recommended fast tracking, and both times it was overturned.
    She was 86 and in the final stages of motor neurone disease. The process is seriously flawed.

    • Andy 4 months ago

      I’m afraid it’s not only flawed, but also too easy for the CCGs to abuse without any consequences for them.

      • Karen Pollen 3 months ago

        We are appealing both decisions….have a date in February. Has anyone any experience of appealing a fast track decision?

        • Michelle wetherall 3 months ago

          Karen, I don’t understand why you have a date in February to appeal a FTT?
          The process of FTT should be dealt with immediately. The whole remit of Fast Track is to get care in place NOW not in a months time!
          Get your father’s GP/Community Team involved. I wouldn’t let this go on…….ring and email your CHC and tell them they have to read page 6 para 12 of Framework which states that an FTPT should be agreed and actioned immediately by a CCG.
          As soon as a FTPT is submitted care funding must be put in place within 24 hours! Not in February!!!!
          Discussion comes afterwards.
          Don’t let your CCG/CHC bamboozle you with the old patter about stable needs. A fast track has been submitted and it has to be accepted. That’s the bottom line!

          • Karen Pollen 3 months ago

            Hi Michelle, it’s all retrospective now as mum sadly passed away from motor neurone disease. She was 86 years old and loved for six months after diagnosis. During that time she was fast tracked twice and funding was denied on both occasions. She had a last assessment two weeks before she died and again, funding was not given.
            Like you, I thought a FTPT should be agreed and actioned immediately. However, on the first occasion it was declined due, apparently, to insufficient evidence. The Community Matron that submitted the documentation said she was completely at a loss as to why it was declined as she had submitted many many applications during her career. On the second occasion mum was in hospital and the application was made from there. That was declined, with an apology, that many staff did not understand the fast track process!
            I think we have a good case and will take this as far as we are able.

          • Michelle Wetherall 3 months ago

            Hi Karen,
            I am so sorry for your loss and I must apologise for the mistake I made in my post to you, when I made reference to your father, when it should have been your mother.
            It’s a very sad time, compounded by the insensitivity of a system that is not fit for purpose. Please accept my sincere condolences. We lost dad 18 months ago.
            All I can say is we faced a similar set of circumstances in 2016. Dad was fast tracked during a period of assessment in a “step down” CCG funded bed and like you the manager at CHC said the FT had insufficient evidence. The manager of my father’s care home was persuaded by the CHC manager to say that my father’s condition had stablized and that he was no longer “end of life!” With Parkinson’s disease and dementia, quite how the CHC Manager knew this, still remains a mystery.
            The CHC Manager had never met my father!
            I argued with the CHC Manager via emails and the phone that the NF was being flouted. I was relentless in my argument!
            The very last email that I received from this now Ex employee stated that the FTPT would only be valid for 3 months and that it would be withdrawn at review! It was at this point that I realized that CHC/CCG were not there to help my Dad and that I was entering into a battle with them. The physios/occupational therapists and nursing staff that were supporting my father all said the same thing. You wont get funding, No one gets it unless you only have a few days to live!
            I was determined to prove them wrong. I did!
            Karen, you definitely have a case! I hope that you can get hold of the FTT paperwork for both submissions. I demanded I had copies.
            Read the NF for FTT and make that appeal. It’s shambolic that a hospital FTT submission is declined because staff did not understand the process. I don’t believe that statement at all. It’s rubbish! A clinician looking after your mum would have had full the facts of your mother’s condition and care needs and completing the simple 3 sided form that enables immediate provision of a package of NHS CHC isn’t rocket science. If you have detailed medical information about your loved one and the 24 hour care they need to keep them safe and alive, then you could complete the document yourself. I could have written the document myself but it would have been 12 pages long, detailing my father’s health needs, care and deterioration.
            The FTT document consists of 3 A4 sides.
            The first page details the patient and clinician. The 2nd page outlines the reasons for FT and then there is a box/paragraph for the clinician to document the evidence they have of the rapid deterioration and prognosis. Crucially it isn’t just about being end of life. It is about the extent of the patients care needs.
            It is also about deterioration that can be reasonably anticipated to take place in the near future, which is very relevant to your late mum’s circumstances. I would be absolutely focused on this FTT refusal.
            This is a total failure to follow the NF on the part of your CHC/CCG. THE FTT is NOT AN APPLICATION IT IS A SUBMISSION AND HAS TO BE IMPLEMENTED WITHIN 24 HOURS. THEY CAN ARGUE ABOUT IT LATER. BUT IT’S NOT FOR THEM TO RULE WHETHER IT’S ACCEPTED OR NOT. The appropriate clinician has deemed it necessary to submit a Fast Track Submission and would not have done so without good reason/cause.
            The submission MUST be commissioned within 24 hours and any discussion about eligibility should come later. They have completely undermined the NF!
            The framework says: Occasionally, a CCG may arrange for a review of your needs and arrange a DST to be completed AFTER IMMEDIATE SUPPORT HAS BEEN PROVIDED FOLLOWING THE COMPLETION OF A FTT.
            The CCG CANNOT decide to complete a DST before the FTT has ben put in place, it is against the rules and cannot be clearer. They CANNOT change, or seek to alter, add or manipulate the FTT with the purpose of denying eligibility.
            Karen, I hope this has helped you a little, to understand the FTT process and make the case.
            Good Luck.

          • Jenny 3 months ago

            Michelle, I think your comprehensive and well researched answer to Karen demonstrates an important issue; you and a relative have been affected by a decision not to award Fast Track, whilst those administering the system probably haven’t. You’ve spent time getting information about correct process, because it was in your interest to do so. They haven’t.
            I can easily believe they have admitted in writing that they didn’t know what they were doing. They’ve probably had no training from the CCG or CSU. Why train staff how to spend budget, when a swift and unlawful refusal will probably be enough to make the patient and their family go away?
            Sorry to be so cynical, but it is a fact that people don’t change habits that work well for them.
            I too think Karen has a good case, and am grateful that there are people who research and inspire others to occasionally call out CCGs and CSUs, who must know that they are acting unfairly and unlawfully.

          • Karen Pollen 3 months ago

            Hi again Michelle,
            Thank you so much for your reply. It helps when people are positive and it is a complete change to coming up against a brick wall!
            I am desperately trying to get hold of the paperwork re the fast track submissions from the CCG as well as doing lots of research/reading of the national framework etc.
            I will let you know how I get on!

          • Karen Pollen 3 months ago

            Hi Jenny, so good to hear that people think I’ve got a good case! There are not many examples of people appealing fast track decisions, but from what I’ve read I certainly believe the CCG had a statutory duty to make the decision to award fast track chc funding. Michelle’s replies have certainly helped.

          • Michelle Wetherall 3 months ago

            Hi Jenny,
            Thanks for your comments. You’re right to be cynical. CHC & how we go forward in nursing care for the elderly and indeed social care for all is in desperate need of reform. I’m hopeful that the work that Admiral Matthias has done recently will help to keep up the pressure on Government.
            Families should not have to fight for nursing care from the NHS. I should not have had to spend a huge of amount of my time fighting for my father to be in receipt of nursing. He was a very ill man with Parkinson’s disease and dementia. If we go back to the Government of the late 1970’s and 1980’s my father would have been hospitalized in a geriatric hospital as was the case back then or indeed a mental health hospital. Our area had several hospital’s for this purpose. I’m not saying that we should go back to those days, but many of these places have been demolished and the elderly now end up on trolleys in general hospital corridors waiting for hours on end to be treated/admitted. Hospitals are full of our ageing population with acute long term conditions requiring specialist nursing.
            So many are nearing the end of life, with complex needs. You only have to read the accounts on this platform that detail the long-term, complex health needs of people who have been denied funding.
            This I find appalling for our elderly, who like my dad had served his country and was not a burden on society. Yet in his final years when he needed nursing care he was denied it and made to use his hard earned/taxed savings to pay over a thousand pounds a week for his nursing care.
            Society/Government has an urgent responsibility to sort this out.
            I think i have said previously, that I don’t believe CHC assessors are without training or as some have said “clueless!” I think that they are trained well. Trained in how to deny funding! How to manipulate evidence and the domains. It’s a job you’d have to be hardened to.
            Trained to say, “We are sorry but there is insufficient evidence”, trained to say” The hospital staff aren’t competent in completing the Fast Track”. I think this is absolute rubbish.
            I know what the fast track document entails. It’s very simple to complete for any clinician in or out of hospital. The question is “Why aren’t hospitals making CHC/FTT submissions?” Why are the simple checklists being completed? Is it because CHC/CCG’s discourage it? I asked for a checklist repeatedly whilst dad was on the hospital ward and it fell on deaf ears. No one wanted to do it. Why?
            What I do know is that the FTT document should be shared with the relatives. I doubt that it is. I had to ask for our copy over and over again.
            This is why I urge Karen to get a copy of her mum’s FTT. She will then see what exactly was documented with regards to her mum’s needs. Let’s see the status of the person completing the FTT, if indeed it was completed at all? Let’s see why it was declined. Let’s see what criteria was applied to deny an immediate package of care.
            I say all this with experience of my father’s FTT, which was completed by his own GP and nursing home manager and then refused by a nurse assessor, with the comment “insufficient evidence”. In other words a desk bound nurse assessor who didn’t know my father, over ruling a Doctor who was treating him.
            Fighting for CHC became a campaign for justice and change in this unfit process/system, after all we are the next generation that will be suffering the same fate if things aren’t changed.

          • Michelle wetherall 3 months ago

            Hi Karen, I’m pleased you are going to appeal the decision to deny eligibility of the FTT.
            You have absolutely nothing to loose. Like me you have lost the most precious person. Do it in memory of your Mum!
            I could write a book about what happened to my dad during his last four years and the dealings with the NHS/CCG/CHC and his nursing home. I would love to name and shame.
            I have a feeling that your CHC will come up with every excuse not to provide you with a copy of the FTT’s .
            DON’T accept any excuse. Keep up the pressure with appeal and complaints.
            Remember the NHS should be transparent! Any attempt to hide the FTT’s from scrutiny is definitely reason to be suspicious of the NF being abused.

          • Karen Pollen 1 month ago

            To Michelle and others who took the trouble to reply to my comment …..thank you!
            Today we heard that our appeal for fast track funding , for our 86 year old mum who had MND, was upheld. No apologies for all that she was put through and, in particular, her truly awful death, but it is a good result. Mum won’t benefit but it does feel like a campaign for justice as things do need to change.

        • Jenny 4 weeks ago

          Congratulations Karen. Another solid win. Please now take some time to relax and reflect that you did your very best for your mother. If you’re not under any type of Non Disclosure Agreement, make every effort to make people aware of your case. Especially inform MPs and anyone else involved in public finance. This ridiculous situation whereby there isn’t enough money to award CHC when needed, so CCGs and CSUs devote time and energy in keeping their staff and patients in ignorance of all aspects of CHC and its administration is unfair, unlawful and actually costs thousands each year in interest and restitution payments for retrospective cases , appeals and claims for legal and other costs incurred in bringing these cases. Surely avoiding this gross abuse of public money could be avoided by better training, and a transparent administrative system with realistic funding to meet realistic needs?
          This is the point that needs to be addressed, and which the tabloids cannot grasp, and which many in government would prefer to avoid for fear of losing votes by increasing taxation to investigate and fund it.

          • Karen Pollen 4 weeks ago

            Thank you Jenny. We were not asked to sign any kind of NDA…thankfully….and I fully intend to go back to my local MP and make her aware of the situation. I really want her to understand that it is a postcode lottery and our area is one of the worst CCGs for awarding CHC funding. She was not particularly helpful first time round but I intend to keep going!

          • Michelle Wetherall 4 weeks ago

            Hi Karen,
            Well done! I know how relieved you must be feeling. It’s a bittersweet victory as your mum has passed on during the process.
            The euphoria of winning is far outweighed by the distress and emotion of loosing a parent.
            And you’re so right about CHC not even apologizing for the failures. Same as you, we just got a covering letter, saying that they agreed with the recommendations made at IRP. No apology to the family, no lessons to be learnt…..nothing! Hence my 12 page complaint to them for the way in which my late father’s case was handled. No doubt a waste of time, but it made me feel better writing it.
            I’m just happy to have been of some help in a small way.
            All the best.

          • Karen Pollen 3 weeks ago

            Hell again Michelle and Jenny, one of the actions noted on the documentation we received was that “CCG to continue audits at the Hospital, on fast track applications”. Surely this shouldn’t be happening? They had an audit on mums fast track application. We complained about it at the time because mum remembered nothing of the alleged visit and we felt that a hospitalised, sick 86year old lady should have had her family with her when this was happening. We also asked all the ward staff about the visit and no one saw them and it wasn’t documented anywhere….hence “alleged” visit. My point though really is that if doctors and nurses understand the fast track referral system (which to my mind is simple) why is there a need to audit these applications? Call me cynical but it would seem that it’s purely to overturn the decision made by the clinician!
            Any thoughts anyone??

          • Jenny 3 weeks ago

            Karen, I’d be inclined to write to the head of the CCG by Signed For post asking for an explanation of the purpose of their audits. I’d also point out that they have identified no Learning Points from your case and that you’ve received no apology or explanation for their behaviour, and so your inclined to imagine they’ll continue to operate in the same unlawful way. Obviously you may feel compelled to publicise their choices further if they don’t respond to your communication.

          • Michelle Wetherall 3 weeks ago

            Hi Karen,
            It’s amazing what you discover the further you get in this process and whilst we’ve both come to the end of CHC, I’m glad you are continuing to help others know what you’ve learnt.
            I had my suspicions that the FTT process was carefully monitored/audited. If it wasn’t then hundreds of the elderly, seriously ill with complex needs languishing in our hospitals would surely qualify and clinicians would be completing the paperwork almost daily. Once an FTT has been commissioned it then becomes more arduous for CHC’s to remove that funding, although they DO! However, removing that funding without a robust rationale isn’t going to be as straightforward as simply stopping the process of FTT in the first place. IF YOU DON’T START IT THEN YOU HAVEN’T GOT TO STOP IT!
            CCG’s hope that many families just don’t know about CHC and FTT.
            BUT, the NF is on the patients side, in terms of its language/regulations as the FTT is concerned.
            IT CANNOT BE REFUSED ONCE IT HAS BEEN COMPLETED AND SUBMITTED. NO IFS OR BUTS!
            We were refused twice and I argued endlessly about the NF being flouted. I remember the CHC Manager emailing me to say that it had been commissioned for 3 months only and then would be removed!
            I promptly emailed her back quoting the NF and welcoming the 3 month MDT and the grounds that they would be using to remove it. They did! Hence the 4 year battle with them.
            The problem as I see it, is the clinicians are reluctant to get involved. It would be very interesting to unearth NHS workplace directives about FTT! Be interesting to know how many are actually started in a hospital setting. Very few if any, I guess. Families are in crisis when a loved one is in hospital and are looking for guidance and reassurance from Doctors and Nurses, they aren’t going to challenge the professionals and question them about CHC/FFT. Only a few hardy individuals such as those on this forum have the b**** to Push for it! I consistently asked for the Checklist to be completed in hospital but that too fell on deaf ears.
            It was only when dad was placed in a CCG 20 bed initiative nursing home and rapidly deteriorated that I insisted on the FTT being completed. All very stressful and not something families want to think about when in those circumstances.

  6. Carol Blythe 4 months ago

    My mother was in hospital recently I asked the discharge team to repeat a CHC checklist for my mother they just used the last one that was done 6 months ago. I am a nurse myself when Challenged so of the grading saying my mother had deteriorated and that they were not taking into account a holistic view I was shot down in flames with the case manager saying “it was taken on the day there was not need for taking into account what she was like on Other day” I was continually told there was no evidence of her acting as she did at home in the hospital. As a nurse I know we do not record accurately in the notes. we just give many things patients do or don’t do lip service and hand it over verbally good or bad. On question the night nurse she told me my mother had been aggressive toward her on more that one occasion this was not recorded in her notes. she also had not been feeding herself and staff were feeding her but recording they were assisting and prompting. when again i challenged this grading of a “C” that should of been “B”‘s the case manager told me it was her pin number and if she changed them she could lose it. There is no consistency its seems no hospital assessor uses the National framework as a guide they make decisions that suit them

    • Michelle wetherall 3 months ago

      Hi Karen, so if you have two recommendations/submissions for Fast Track it can not be turned down!
      Please read the National Framework on Fast Track Submission and appeal the decision.
      I think you will find that your CCG is flouting the regulations. I had a similar set of circumstances, whereby a nurse assessor who was not my father’s clinician turned down the fast track submission from my father’s GP and Nursing home Manager. Astonishing arrogant behaviour from an assessor who didn’t even know my father.
      A FTT has to be sanctioned and any argument over its submission comes later when a 3 month review takes place. That is when your battle with CHC will commence as they try to withdraw funding. I wouldn’t simply accept the outcome. Appeal the decision. Good Luck!

  7. Aj 4 months ago

    Point 7.
    There is a massive difference between not maintaining your weight and being malnourished. You can be mega obese or skinny and not be malnourished. What “andrea” is failing to understand if the criteria for malnourished comes from regular sets of bloods where the pattern shows a downward trend in protein, vitamins, minerals. To the point where something like potassium is at a dangerous level to effect heart muscle contractions. Where the dietician is involved and you have several Malnutrition scores from the MUST tests. You comment on weight loss but the amount lost is significant if it’s over a given % of your starting body weight so an over weight person would need to loose lots (not just water) to be a few % of their weight but a thin person does not need to loose as much.
    Adding butter / cream to your diet does nothing to address malnutrition its adding fat. What your body needs if malnourished is protein and that comes initially from supplements like fortisip from the dietician or doctor and then if more severe pro source from the specialist dietician.
    Just adding every day food to food already eaten is not what is done if you are suffering from malnutrition. So as a lay person or even “nurse” you dont understand the medical side of the nutrition domain. It’s also not 1 of the things in the list for that criteria, it’s all or multiple. So unless someone has all the history’s of bloods, and different feeding interventions you just arent realising the difference between sustained ‘normal eating ‘ and what it takes to keep someone alive with a feeding tube (every half an hour sounds like heaven) you would get 25 mins between! And even more so feed via TPN when you have all that plus the sterile procedures need to hook, unhook, change dressings, keep feed at right temp, flush in right order and add in a massive risk of sepsis.
    So while it might be upsetting as you think your relative deserves care you have no idea of how bad things could get on the nutrition scale at which point prompting someone to eat requires no specialist medical interventions.

  8. MOYA FITZPATRICK 4 months ago

    Believe it or not I had a positive experience but having worked for the social services and remembering some of the experiences around this, I approached it in a different manner. Firstly I let staff know my previous background and I gave them the idea that I knew exactly how the system worked. A bluff really. I created friendships with staff, obtained your book to catch up and took a big interest in everything. I asked them if each incident had been recorded, why hadn’t notes on diet been updated on dad’s record. I apologized for dads behaviour. When it came to both meetings, I looked them in the eye and no he would not improve in a home because he had not stabilised, he continued downwards hasn’t he I said staring at the nurse. She agreed. Don’t be intimidated. I got full funding. They knew I would give them hell to get it. He died before he left there but that’s another story that involves an inquest! Good luck. Get the book and act big!

  9. Nicola 4 months ago

    Honestly everything about NHS continuing healthcare is severely flawed .

  10. Jenny 4 months ago

    Points 7, 8 and 10 really resonate with my relative’s case. Wrong and inconsistent height and weight measurements giving vastly varying BMIs, contradictory instructions regarding food supplements and the same issues regarding forgetting to eat, or just not recognising that a fork needed to be put in a mouth or a glass of water was there to drink. Absolute nonsense to read and so frustrating to witness when it was going on.
    Similarly Behaviour. What becomes normal and often too tiresome to record is vital in showing Intensity and complexity. How can it possibly be fair that one resident who verbally or physically threatens staff or other residents (who may not be able to assess the validity of the threat) should go un documented and be ignored? Undocumented or poorly documented issues of Behaviour by my relative apparently didn’t account for the later discovered skin integrity issues. His choices not to be toileted, changed or moved were nothing to do with his sexualised and abusive behaviour the staff had to deal with if they tried. So they gave up recording it.
    Don’t even get me started on Best Interests! On many frustrating occasions staff at all levels of qualification chose to ignore the fact there were registered and appointed Powers Of Attorney, and that my relative did not have capacity to make informed choices beyond sugar in their tea. Nonetheless, they carried on doing this throughout the period of care. One care home manager decided she was best placed to complete relative’s end of life care plan without reference to me and return it to the GP.

  11. Sarah Teasdale 4 months ago

    Thanks for response, sadly didn’t pick up on that comment by Social Worker at the time.

  12. Sarah Teasdale 4 months ago

    My dad passed away from Dementia you in January 19. We managed to secure NHS funding from the April 18 to his passing in January. .A best interest decision was made by Social Worker in Sept 17 that he could no longer be cared for at home with carers and needed nursing care. He was put on end of life care in January 2018 but they then changed their mind as he “got better”. Is it too late to appeal the period from December 17 to April 18 which we have had to pay nursing home fees for?

    • Care to be Different 4 months ago

      Hi Sarah – sadly it probably too late if you have not lodged the appeal within the 6 month time limit of the decision being communicated to you. Kind regards

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