Attending an Assessment or Independent Review Appeal?

Attending an Assessment or Independent Review Appeal?

people having a meetingHere’s a recent question posted on our Facebook page:

“Is it normal to be asked who is attending at the NHS Independent Review with you?   I’ve said yes, someone is coming with me, but do I have to tell them who as long as it is not a Legal Representative?” 

The National Framework for NHS Continuing Healthcare Funding and NHS-funded Nursing Care (revised 2018) states that you are entitled to bring a representative /advocate along with you to the Multi-Disciplinary Team (MDT) assessment, and to any subsequent appeal if your application for NHS Continuing Healthcare Funding (or ‘CHC’) is turned down. Therefore, you can have an advocate with you at the Full Assessment conducted by an MDT, at appeal before a Local Resolution Panel, or at an Independent Review Panel conducted independently by NHS England.

Your representative or advocate can be anyone you choose, but is usually a family member, friend or peer. But it can also be someone legally qualified, a nurse or other professional advocate.

You can, of course, try and argue your relative’s case for CHC yourself, and some families with patience, resolve and determination, do so quite successfully. See Admiral Mathias’ story below. However, given the high stakes involved, we recommend that if you choose an  advocate, find someone who is fully conversant with the NHS National Framework, knows how the assessment process works, and understands your relative’s healthcare needs.

Some families who have tried their best to ‘go it alone’ have often become unstuck; perhaps overawed by the whole assessment process which is more complex and emotionally draining than they had envisaged, or else are out-manoeuvred by the NHS’s appointed assessors.

Failing to secure CHC Funding where it’s rightly due, could make the difference between your relative paying many thousands of pounds a month for their healthcare and accommodation, or else paying nothing at all!

You can be assured that most Clinical Commissioning Groups (CCGs) won’t offer to make your life easy during the assessment or appeals process. We frequently hear stories where the CCG have even tried to put families off pursuing their relative’s claim at all. Some CCG’s assessors may have a conflict of interest, trying to balance a fair assessment, whilst their allegiance is aligned to protecting NHS budgets.

However, having a specialist advocate in CHC Funding, fighting your corner, and being present to ensure that the assessment or appeals process is undertaken fairly and robustly, can be a huge advantage and tilt the playing field back in your favour. Of course, however good the advocate is, they can’t make someone eligible for CHC if they simply don’t meet the high bar to achieving this funding. Even so, even if your relative is found ineligible for CHC, at least you will have the peace of mind that you have done everything possible to make sure that someone else has independently overseen the process; and if the process is flawed, can then advise you on the merits and grounds of an appeal.

We applaud all those fantastic success stories and supportive comments from families who have been onto the Care To Be Different website and used the wide range of free resources available to help them to endure the mentally and physically exhausting battle with the NHS; or have chatted with others who have faced the same problems to get the answers they need; or who have bought the book How to Get The NHS To Pay For Care (kindly referred to by our one of successful contributors as the ‘bible’). Read our blog: Exposed: NHS Continuing Healthcare makes headline BBC News

But sadly, these success stories are few and far between, when compared to the overall number of families going through the assessment and appeals process, nationally.  Some undoubtedly start out enthusiastically, but soon find themselves entrenched in a complex and emotionally draining assessment process, being worn down and frustrated at every corner by the NHS, in a subjective assessment process which often appears slanted in favour of the NHS.  Knowing your rights, and how to present and argue your case coherently, may give your relative the best opportunity of securing CHC Funding.

Although the National Framework suggests that legal representation is not required, lawyers such as Farley Dwek Solicitors and their team of specialist nurses, have a wealth of experience in this area, and have been representing families for years, helping them through the assessment and appeals process.

The National Framework states that it is not necessary to appoint a legal representative, which is quite true, but of course they would say that! Understandably, the NHS don’t want a skilled advocate attending to support a family, and may be worried that a flawed assessment, or local appeal (which they conduct, too), will be swiftly countered.

One success story is retired Admiral Phillip Mathias, who fought the NHS for two years, spending more than 300 hours battling red tape, in an effort to secure over £200,000 for fees wrongly paid for his mother’s care which should have been funded by the Clinical Commissioning Group.  Mr Mathias said that Fighting for NHS funding for my mother was as complex as my work on the nuclear deterrent”.  You can read his full story in our blog.

If you are ever told by an NHS representative at assessment or appeal that you cannot have a legal representative, then don’t be fobbed off.  That is absolute nonsense!  You are absolutely entitled to have anyone you choose to represent you, whether they have a legal background or not.  However, although a specialist lawyer or nurse advocate will only have the same status as any other representative you chose, you will have the advantage of knowing that they have the expertise to argue your relative’s CHC claim.

The National Framework provides that “any individual is entitled to nominate a person to represent their views or speak on their behalf and this could be a family member, friend or peer, a local advocacy service or someone independent who is willing to undertake an advocacy role”.

Essentially, therefore, anyone can act as an advocate. It is not unreasonable for the CCG’s assessors or the Independent Review Panel to ask if you have appointed a representative to be present at an assessment or appeal. It is courteous, if asked, to provide the names of those attending, but you do not specifically need to state what (legal or other) qualifications they have.  Some CCG assessors conducting an MDT can get quite defensive, and on occasion have been known to walk out of, or not proceed with an assessment if they think they are going shown up by a professional advocate. It should be of no consequence to assessors, as the assessment and appeal’s process are based on the merits of your relative’s eligibility for CHC funding, and not any preconceptions they may have.  All advocates are of an equal status. They are merely presenting the evidence in support and to ensure that the assessment process is carried out robustly. The MDT assessors (or any appeal panel) cannot refuse to proceed if you bring an advocate along.  You can remind them that The National Framework (revised October 2018) encourages it!

So, in answer to the Facebook comment, you are entitled to have an advocate, and it can be a legal representative, or indeed anyone else you chose. You can notify the Independent Review Panel in advance of who is attending as your representative, and it should not make any difference whether they have a legal qualification or not. All advocates are of equal status, it’s just that some may more conversant with the National Framework and how to best argue your relative’s case.

We recommend that you also read our blog “Can The MDT Panel Refuse To Proceed If I Have An Advocate?”

If you need one-to-one specialist support, then visit our web page for further details.


  1. shauna salkeld 1 month ago

    Hi , My son who has been left with severe cognitive and aggressive behaviours since suffering a brain infection and worsening epilepsy received health care funding for nine years then in 2018 he had another DST his first for nine years and after no discussion with the rest of the MDT was found not to eligible for health care funding. We went to a LRM which was useless and it went back to panel but they still sided with the CHC nurse. We are now going for an independent review and I would like your comments about the review and whether we can hold out much hope. We are so angry that even though his needs have become higher he has lost his funding. He was funded was 15 hours of 2:1 how is that not an intense level of need . His care home are brilliant and are meeting his needs so well that now of course looks like he has not as many needs as the amount of injuries to staff and himself are now neglible but according to the framework a well met need is still a need. I would be very grateful for any comments .

  2. Andy 5 months ago

    Not long ago I’m sure I came across an article on here that gave a link to a ‘letter template’ for requesting an Independent review panel. Now I can’t find it. Can anyone help?

  3. Sue Risbridger 5 months ago

    Mum was fast tracked in Feb 2016, the 3 month review was not done, in 2017 an annual review was done and funding continued due to further deterioration . At the next annual review in 2018 the nurse assessor changed the annual review to a fast track review, 2 years 5 months later ! obviously changing the national framework guidelines of within 3 months. She also deemed mum no longer eligible for funding despite further deterioration in her health (DST 1 severe, 4 high’s, 4 moderate) so called a CIN DST, despite no improvement in Mum’s health and Doctor has her on end of life care and end of life meds .On this DST she scored Mum as 1 severe, 2 high’s, 6 moderate’s , we think to make it fit not eligible criteria.One reason for removing funding was that she wasn’t using end of life meds. We mentioned all of this at the peer review and at the LRP appeal but seemed they chose to ignore incorrect procedure saying it wouldn’t have changed the outcome, but then they would ! At the LRP they changed the levels back to 1 severe, 4 high’s, 4 mod but funding refused. Of course they get out of it with the 4 characteristics, no intensity, unpredictability or complexity which is a joke as the 1 severe is for cognition, mum has latter stage dementia, double incontinent, contractors of both legs and left arm/hand, unable to reposition herself , unable communicate her needs, immobile and bed bound , has to be fed and given drinks , and meds. Now going to IRP, which is in Taunton, we live in Kent , sure that’s just to put you off appealing. We will once again say that the procedure was not carried out as per national framework guidelines and remind them these guidelines cannot be changed, and go through all other errors we have found , but, not holding our breath, at the end of the day it is still the NHS reviewing NHS hardly independent .

    • Michelle Wetherall 5 months ago

      Hello Sue,
      Don’t be deterred! Having read this post and your previous submissions you are in a good position to make the IRP appeal. Focus all your attention on the Key Indicators. The switching up and down of the awards in the domains doesn’t really cut it. It is the overall day to day nursing needs of your mum that you need to evidence using those 4 terms.
      If you can demonstrate this through evidence from specialists/care home notes etc, you have every chance of success.
      From what you have described with your mum it sounds that her needs have an overwhelming impact on her health requiring 24 hour nursing care, leaving her with a poor quality of life.
      Remember that the DST assets a clear recommendation of eligibility to NHS CHC where there is one domain recorded as Severe, together with needs in a number of other domains or a number of domains with high and or moderate needs. This indicates a Primary Health Need. Most assessors ignore this believing it is necessary to score a Priority or two severe awards to make a recommendation for eligibility.
      HOWEVER, it makes no difference what the scores are. We ended up with a DST that was incomplete all the way up to IRP. One domain remained without award and time and again we were told it didn’t matter as, and I quote “There is no need for the domain to be completed. The purpose of this letter is to inform you of the outcome of the assessment, using the four key indicators, why the decision was made NOT to award CHC funding”
      The IRP disagreed with CHC on this point and said the domain should have been scored.
      From my own experience, I would advise you to place all your efforts on the key indicators and keep making the point that the decision to deny eligibility placed the responsibility of care upon the local authority, (which given your mum’s nursing needs) is in direct conflict with the law and NHS Guidelines.
      Read everything you can about your mum’s conditions and use that evidence with the key indicators to make your appeal. Don’t focus too much on maladministration. Yes, we had lots of it going on, but it won’t make any difference at IRP. Remember I had a DST that was incomplete and which IRP identified as unsatisfactory. They want to see that your mum had a PHN need at the time of the assessment.
      I remember, I was asked by the Chairman before we went into the room, what I wanted to focus my appeal on.
      I said that I didn’t want to talk too much about the handling of the case and all that was wrong with the system, because I couldn’t change what had happened, but I could prove through evidence and the Key Indicators that my father did indeed have a PHN for the period of enquiry. The Chairman was in agreement with me and kept the focus upon the Key Indicators.
      We too had to travel over an hour to our IRP to another county but don’t let that put you off!
      Go with a positive attitude. Remain calm and don’t get into any bickering with the panel. Remember the 3 P’s…. Positive, Professional and Polite!
      Good Luck and do let the forum know how it goes.

    • Andy 5 months ago

      I received the outcome of an LRP I attended on January 9th a few days ago. They made me wait 8 weeks from the meeting date to inform me of non eligibility (after being chased many times). They scored my mother 1 SEVERE, 4 HIGH, 3 MODERATE, 1 LOW. I feel it is closer to 3 SEVERE as her condition is closer to the SEVERE guidance than the HIGH guidance for Mobility and Nutrition. For example for Mobility the guidance talks about not being able to load bare and risk of falls under HIGH, and completely immobile, risk of harm of movement for SEVERE. My mother is totally immobile from the waist down, but has very slight shaky movement of arms and head. She is at risk of harm from movement. Should they pick the one closest?

      I also presented a multitude of evidence that pointed towards eligibility with a strong focus on the 4 key indicator, the difference between social care and nursing care and the primary health needs test. It was listened to at the LRP and never disputed, but then completely ignored one I had left the room. Their report makes unsubstantiated statements like “no identified intensity associated with a primary health need” without even giving a hint at where the threshold for eligibility might lie. This allows them to set the bar as high as they like ignoring both the National Framework and the law.

      I am now going to appeal to NHS England for IRP and hope it will be different. Right now, I am trying to figure out what I am supposed to write in my initial appeals letter for IRP. Should I be including all my evidence? I don’t trust the CCG to pass all evidence to NHS England prior to the panel.

      • Care to be Different 5 months ago

        Hi Andy – It is vitally important to get it right as this is your last chance. Have a look at our book or consider speaking to one of our advisors if you would like some 1:1 support. Kind regards

        • Andy 5 months ago

          I do not see the IRP as my last chance. Surely my last chance is Judicial Review? If they are deliberately and blatantly abusing the process and acting unlawfully to deny eligibility, then it doesn’t matter how well I prepare, the outcome is still the same. I hope the IRP is better than the LRP, but I’ll have to wait and see.

      • Michelle Wetherall 5 months ago

        Don’t let the LRP put you off. My experience of a LRP was rubbish. Handled by one nurse assessor who tried to tell me that my father wasn’t eligible because he hadn’t scored two severe’s or a priority. I disagreed with everything he had to say and eventually I stopped the meeting, saying that it was a waste of time (politely) as I was never going to agree with what they reported. I firmly believed that my father had a PHN at the 1st shambolic assessment and that everything after ie: withdrawing the FTT after 3 months was in direct conflict with the NF and law.
        My advice for what it is worth ( I’m just a daughter who was determined!) is to focus all your energy on gathering the evidence to prove a PHN using the 4 key indicators.
        Understand this area and demonstrate your mother’s 24 hour health care needs and you stand every chance at IRP. Use all your knowledge of your mum’s disease/conditions and how they interact and how they have an overwhelming impact on her quality of life.
        I would urge you to be cautious about using the time at IRP wisely.
        I understand your frustration at the way in which your case has been handled so far and the maladministration but you can’t change that outcome. You can complain about it later, but that won’t prove a PHN and at the end of the day that’s what CHC is all about.
        They are not going to overturn a decision just because a CCG didn’t complete the paperwork properly or on time or indeed carried out practices that we on this platform know to be wrong.
        So by all means talk about the way in which it was handled but don’t let it dominant proceedings.
        You want to keep it to the Key Indicators and less about the scores in the domains or maladministration.
        It will indeed be your last chance to prove a PHN, without then having to engage legal representation to pursue it through the courts. The cost of representation can not be reclaimed if you are successful at IRP.
        I sense your anger and I sympathize entirely. Anger, sleepless nights and in my case ill health were a result of years trying to prove our case.
        In terms of submitting your appeal, you will be contacted by an NHS England CHC IRP Coordinator and told of the panel membership and given an information pack. You should also receive a copy of the file supplied to you by your CCG. When I received our file it was an Arch lever full of hospital notes and care home notes for the relevant enquiry period together with the CHC documents. Quite overwhelming, but I would urge you to go through it in detail as there might be inaccurate/missing information. In our case I discovered that 2 Checklists had been completed a day apart ….. long story here……but needless to say it highlighted the poor practice that was going on.
        I informed the coordinator that I would be handing my appeal in writing to the panel the morning of the IRP.
        I’m not sure this is protocol but it worked in our case. I didn’t want our CCG having prior knowledge of it, although if you were to submit your appeal beforehand it would be to the coordinator and not your own CCG.
        Whether it is disclosed beforehand to your CCG is another question! BUT, nothing stopping you asking these questions of the coordinator. I remember the early morning of our IRP and worrying about whether we would have a trouble free journey and get to the venue on time, in order to submit my document and speak. Incredibly stressful. I remember deciding to send it as an attachment/email to the IRP coordinator at 6am that morning, with a message to say please read this out, in case I am held up in traffic. There’s no second chance of an IRP if you don’t show up!
        You will have to have faith in the coordinator. It goes against the grain when you see them as the opposition but I did build a working relationship with my coordinator who did their best to accommodate a suitable date and venue for both sides. I also remember the chairperson asking me what I wanted to focus on that day, ie due process or the health side. I asked to keep the focus on the PHN. Yes there was plenty to talk about the maladministration of my father’s case but there was nothing that could be done to change that. I wanted to keep the meeting focused on proving my father had a PHN.
        I hope I have helped you a little and energized you to fight on. Let me know if I can help further.

        • Andy 5 months ago

          Hi Michelle,
          Thank you for your detailed response. So if I understand correctly, the first step is for me to contact NHS England with a brief letter simply requesting an IRP? I was given a name and address to write to by the CCG.Following this initial contact, I then have plenty of time to put together a “submission” in support of my mother’s case? It appears there is no rush to put together this detailed submission from day one.

          • Michelle Wetherall 5 months ago

            Hi Andy,
            Sorry I focused most of my post on the presumption that you were at the stage of being accepted for IRP.
            To get to IRP will be no mean feat either! Sorry, I don’t want to deter you.
            At my LRP I made it perfectly clear I wanted an IRP. I didn’t wait for their decision! I disagreed throughout LRP as it was a total waste of time. I can’t remember exactly who sent me the request for IRP but from that point on I dealt with a Continuing Healthcare Officer with NHS England.
            So I received paperwork from both my own CCG/CHC and NHS England.
            I had to fill in a 2 page (4 sided) request form ( I think this must be the form you are searching for).
            Pretty straightforward, with the last two sides relating to what I was unhappy with! Not enough space to write everything that is wrong with this process.
            So the two boxes you need to fill in are:
            I am unhappy with how the CCG/CSU reviewed the case. I do not think the process was fair because…….
            I am unhappy with how the CCG/CSU interpreted the care needs because…………I remember having to squeeze in my comments as there wasn’t enough space to write what I wanted to say. I attached a separate page to the questionnaire which I prepared using the four key indicators and how they demonstrated my father’s nursing needs. I kept this document to 1 side. If you get accepted for IRP then you can expand it further. I was cautious of keeping it to the point.
            I wish I could upload the questionnaire and my document to help you.
            Once this questionnaire is received by NHS England, the Chairman then reviews the case with evidence from CCG/CHC (which included all my submissions to them).
            You then have the agonizing wait to see if the Chairman believes there is a case to be heard.
            I remember whilst this was happening I had a huge folder sent to me from CHC/CCG (a copy of what they had submitted to NHS England). It was daunting to say the least and I had this overwhelming feeling of defeat, but I was determined to go through it page by page. Glad I did because I found some inaccuracies and maladministration that I could use to progress my case. I also remember emailing the NHS England officer to say that there were inaccuracies in the folder I had rec’d and getting a reply to say that the Chairman was reviewing the points I had raised. I had to wait many weeks to receive the news that I had secured an IRP.
            My advice would be to now contact your own CHC/CCG and insist that they forward you the necessary documentation to be completed for IRP. Remember the request must NOT be later than 6 months following notification of the outcome of the LRP.
            It would also be a good idea to write to NHS England for your area and register your request for an IRP.
            Again, I wish I could help more. If you go on the NHS England website and search NHS Regional Teams, and go contacts, you’ll be able to locate the address you need to post to for the area you live.
            I hope this has helped. Like I say an IRP isn’t accepted just because you request it. The IRP review Chairman makes that decision, but I can see from reading your previous posts that you know about the NF and the DST/Key Indicators, so you have every chance of proving your case.
            Good Luck!

          • Michelle Wetherall 5 months ago

            Hi Andy,
            I’ve now had time to search through my documents and thought this paragraph from a letter from NHS England Continuing Healthcare officer might be useful to you as you request an IRP.
            So………”The Chair will be looking for your observations about the kind of care Mr ****** needed and how much care he needed. Try to tell us how often care was needed and how long it too. Be as definite as you can, it helps us much more if you say that a problem happened two or three times a day, than if you tell us it happened a lot. Tell us about anything that made giving Mr ***** care harder or more complicated and let us know if his needs were changing or difficult to know in advance. Mental and emotional needs are as important as physical needs and we need to know about care that was given by relatives or volunteers just as much as care that was given by doctors or nurses.”
            The letter goes on to state…….. Once we have received your completed questionnaire together with any submission and Mr ****** file from CCG we will consider whether an IRP should proceed and will be in touch.
            The CCG folder for my father’s case was considerable and contained copies of every complaint/letter/email I had made to CHC/CCG.
            As you move forward, I would urge you to submit a complaint about the process of LRP with the reasons you have outlined previously. In our case the IRP identified failures at LRP saying that the CCG had opportunity to put things right at this stage, but failed to do so! So whilst you are requesting an IRP also make that complaint. Don’t worry about repeating yourself, I did it continually for the best part of four years! Once you are in receipt of the case file from CCG, do go through it thoroughly and alert your NHS England officer of any concerns to be shared with the Chair who will be reviewing your case.
            You can do this, provided you are determined and have the time to apply the evidence to the criteria.
            I hope you have archived your emails with CHC/CCG, as you will need to check through these too.
            Good Luck

          • Michelle Wetherall 5 months ago

            I think the template you refer to is contained with the article:
            Rejected for CHC Funding Part 1 : How to appeal the MDT decision.
            Also take a look at Part 2, which details how to appeal the LRP Oct 11th 2018
            Hope this is useful

          • Andy 5 months ago

            Hi Michelle,
            I am very thankful to you taking the time to give such comprehensive answers. It is very generous of you.

      • Wendy 2 months ago

        Hi Andy, could you give us more information on the difference between social care and nursing care?

        • Andy 2 months ago

          Hi Wendy, if you carefully study the definitions given for both on page 17, points 50 and 51, there is one very important distinction between the two.

          Unlike Health Care, Social Care never aims to treat, control, manage or prevent a disease, illness, injury or disability. The individual in question may suffer from the same disease, illness, injury or disability, but all the Social Care interventions listed in the definition are there only to support and assist with the activities of daily living of someone with those ailments, but never to give treatment for those ailments.

          I would suggest listing out every single daily intervention and then labelling each one based on the above criteria as either social or health care. If the majority are health care, then I can’t see how they can claim they are secondary or ancillary.

          Where it gets more complicated is in areas whether the definitions appears to overlap. For example nutrition. My mother suffers from severe disease related malnutrition . I am arguing that the 16 daily interventions 24/7 to prevent her getting even worse, are treating or managing a disease, even though ‘managing and maintaining nutrition’ is listed in the social care definition.

          • Andy 2 months ago

            “on page 17, points 50 and 51…” I was referring to the National Framework.

  4. Sue Risbridger 11 months ago

    Just looking for some advice, I am attending an LRP in Oct 19 on behalf of my mum who was fast tracked in 2016, annual assessment 2017 funding continued, but in 2018 funding removed, health needs have not improved, hence the appeal. At the meeting can I say that I think the assessor came in with the intention to remove funding. I believe this to be the case ,as the home manager of the nursing home told me her annual appeal was due and who would be doing it, she then said the funding would be removed because she had already done 5 at the home and all 5 funding removed, and she was right with my mum making number 6! The assessor only spent 5mins with mum and only had 1 hour to look through home records! and was only interested in going through the DST. The previous year the assessor spent 3/4 hour with mum and 3 hours looking at records and decided she was still eligible for funding. So should I say this at the meeting and I have every intention to take this all the way to court.

    • Care to be Different 10 months ago

      Hi Sue – Don’t give up! Call us if you’d like to discuss this. 0161 979 0430 Kind regards

    • M.Wetherall 10 months ago

      Hi Sue,
      I’m surprised at your calm reaction to the shocking events you have told us about. I would be livid!
      You can say what you like at any meeting as long as it’s not offensive!
      Would the home care manager be willing to support you with the information she has?
      I would also be looking carefully at the DST she completed and comparing it to the previous one.
      Look carefully at how the new DST and how the assessor dealt with the Key Indicators of Nature, Complexity, Intensity, and Unpredictability. You don’t say who else was at the MDT? The DST is a tool to be completed by two assessors from A nursing background and the other from S.S. All information from the professionals involved in your mother’s care should have been sought Prior to the assessment, not just information from care home notes that can be notoriously inaccurate or missing.
      Make another complaint to your CHC!
      Having just been through this process, it’s a struggle, but if you get organised from the start and read, read and re-read the National Framework for CHC, you will be better informed than most of those who work in CHC and given the fact that your mother was deemed to have a Primary Health Care in 2016 by virtue of the fact that she was Fast Tracked, I see no reason whatsoever to argue the case for her funding to be reinstated, if as you say her health needs have not improved.
      The latest NHS Revised National Framework Oct 2018 para 181 – 185 page 52 – fundamentally changed the 3 month and 12 month review, in so much as it now has to focus on whether the care plan/package remains appropriate to meet the needs as opposed to whether your mum has a further MDT assessment using the DST and can pass the eligibility criteria.
      Good Luck!

  5. LINDA SAMUEL 11 months ago

    We found my mother a room in a care home 3 years ago, she was becoming too difficult for Dad to look after at home, as she has alzheimers disease. I wasn’t aware at the time that she should have been assessed for NHS continuing Healthcare funding before going into a home, we were certainly not advised of this. After 9 months she lost the use of her legs and could no longer walk, her speech had also deteriorated during this time. Eventually she was admitted to hospital as she was dehydrated and had lost a lot of weight.
    We concluded that the existing home could no longer meet her needs, therefore found her a place in a good nursing home, the discharge nurse was extremely unhelpful and downright horrible to be honest. This was in August 2017. My brother instigated an assessment for NHS CHF in February 2018, which was turned down.
    I then found out about Care to Be Different and started looking into things in a new light, including buying that very useful book. I sent my first letter out on 11th May 2019. After this, I realised, quite by accident, that my mother’s DST assessment has another person’s name on it in three places! I have kept this fact “up my sleeve” for now.
    have also pointed out to the NHS that there does not seem to have been an NHS Assessor at the DST meeting, therefore the previous DST is further substantially flawed. I know this, as my brother, who attended the meeting, recalls that there were only two other people in attendance as well as himself, the Social Services representative and the Nursing home representative. I know my brother is very good at counting. Also, on inspecting the nursing home visitor’s book, we discovered that only my brother and the Social Services person signed in on the day of the DST Assessment. The NHS are currently looking into, what they have decided is, a complaint.
    Today the NHS telephoned me to let me know that they are arranging a new DST during the week commencing 23rd September 2019! I’m thinking they have at long last, after sending me a copy in the post and one by email, realised that the previous assessment has another person’s name on it, otherwise this would seem quite a speedy arrangement.
    Does this sound feasible?
    I will now need to start doing lots of serious homework.

    • Care to be Different 11 months ago

      Hi Linda – if you would like to speak to us about this please do get in touch. We may be able to advise and advocate for you if you require it. 0161 979 0430 Kind regards

    • Michelle wetherall 11 months ago

      Hi Linda, I’m so sorry to hear your story. I to have been battling the NHS/CHC/CCG for the past 3 years and finally reached IRP in April this year and our case was found UNSOUND and Unsatisfactory. We are delighted but because our case is messy with lots of different periods of funding and withdrawn funding, it’s not going to be finished anytime soon, even though my father died during the process.
      We had legal help early in the process but dispensed with their services as it was clear they really hadn’t got a handle on CHC and the complexities that come with navigating it!
      For what it’s worth my advice is to read read and read again the NF and all the advice on this excellent forum. Keep a daily diary of your mum’s health/care/care notes/phone calls. Make a folder for all your emails & Challenge every decision you don’t agree. Be persistent but polite! It’s a struggle but don’t give up. From the little you have told us about your mother’s needs and what has happened,it seems that she was entitled to funding ages ago! Good Luck! M

  6. Richard J. Terrell 11 months ago

    NHS CHC and LA Care is an absolute cruel, heartless mess for those with chronic health needs this country should be ashamed to allow the authorities to persist with.

    It exists…by endless twisting of the law; creating contradiction after contradiction without regard, making assumption you’ll likely give up, or die as my very best friend did with invoices now fluttering on his grave!

    • Richard J. Terrell 11 months ago

      Should read
      …this parliament elected should not allow the authorities to persist with as does my MP ignore all I have written endlessly year on year.

  7. Richard J. Terrell 11 months ago

    My friend of some 35yrs known, whom lived with me, finally needing 24hr care, housebound, bi-polar, heart, stroke, could hardly walk. Neither, the LA, Chief/local councillors, MP, year on would listen.
    I had to get him into hospital for treatment of three infections soon after I managed despite opposition he qualify a NSH DST. It stated; he was beyond nursing care. (Though subsequently DST was arranged following a check list, we were not ready at short notice being we needed the written notes, they too cancelled DST themselves as the district nurse was off on holiday that day, and the locum social worker did no understand the case, as there was no Care Plan, nor Carers Assesment, the LA was however very active persistently pursuing he pay for carers coming in, for which he was being charged three times a day though it was only once a day as needs not assessed) By now he was being hounded for £30,000. The LA forced my friend to go into a home specialising dementia, and they took ALL his/my rights away, and attempting to refer me to mental health, but mental health referred it back to LA as it was their problem, but that they then ignored.

    It is a painful story, as I it took me near 2 months to get a solicitor to him to get him home, whom established they had no legal right, no DOLS; he been held against his will, nor did he know there was a bill for £10,000 for being there.
    To cut this story likely fill a book, when I got him home, the LA discriminated love both of us. I have cracked under duress some 29 times, the public calling 999, sent to A&E, the LA refusing to respond except further invoices.
    We took the matter intially the solicitors whom may recognise the case as sent some 500 pages to them and the LGO. Rightly, the nurse quirked he should anyway be on Section 117 so I spent much time researching his medical history being indicators were found. Still the need of the DST was too needed. I had sent the pile of correspondence to both this solicitor and LGO.
    Then, he returned to hospital with further infection. We are under duress, no care plan, carers assessment, invoices now £50,000 and after months the LGO needing his consent to proceed. I got him to sign it whilst in hospital AND HE DIED ABOUT 5.20am FOLLOWING MORNING of heart condition.
    The LGO finally concluded it was all my fault and wouldn’t listen we had been REFUSED a an Advocate independent of LA and no care/cares assessment ever complete, and it was alright they declared LA to overcharge as the money was partially being refunded to his estate after I argued. We were too much in distress for him to express and organise his Will, thus died intestate, and I am on guaranteed pension credit and cannot find a solicitor whom can assist in getting justice, though nothing will bring my friend back.

    I am still unable to get justice or find legal reprentation without money even if it is clear the Care. Act 2014/5 is not adhered too, and am writing here to express it is time this two tier system of Social Care and NHS Care is clearly defined as it is a cause of much division when you are Ill, in distress and becomes nobody’s department to clarify what needs are.

  8. Keith 12 months ago

    My aunt has been in in a home for 4yrs and 3yrs were funded she was reassessed in September 18 and was found that she no longer qualifies for funded care. As of January 19 she has been self funding the home has known about this since November 18. I’ve just found out that my aunt should have been receiving £158 a week for nursing care but the home did not apply for it until June 19. Should the home applied for this inNovember when they knew she would self funding from January. As the home did not apply for this until June the CCG will only back date it till then. Dose the home have an obligation under law to ensure they apply for this in time and how could I recoup this money thanks

    • M.Wetherall 11 months ago

      Hi Keith,
      I can’t help but think why you haven’t appealed the decision to withdraw the funding?
      Perhaps I have misunderstood your posting.
      Yes, you are right to chase up the Funded Nursing Care Contribution that should have automatically
      been applied at the same time as the decision to remove Full funding, but this will only amount to approx £1,420.
      Perhaps CTBD can correct me if I am wrong, but I don’t see this as an issue about the Home where your Aunt is placed.
      It is an issue with your local CHC/CCG. I have not heard of a home having to apply for FNC. It is awarded following CHC assessment.
      At the point that your Aunt was reassessed, there should have been a full CHC/DST and the family should have been invited to attend and received written notification before funding was withdrawn, together with notice that Funded Nursing Care would take it’s place.
      Can I respectfully suggest the family get together to discuss the facts and make contact with the CHC/CCG responsible for your Aunts case.
      With your Aunt being fully funded for 3 years it’s hard to see how she would have full funding withdrawn without a robust rationale from CHC respecting the NF and the key indicators, unless of course your Aunt’s health has improved considerably, but given the fact that FNC was awarded in place of full funding, it suggests not.
      Good Luck M.

  9. Jonathan Comley 12 months ago

    Can you audio record the IRP meeting? i.e. I understand you can freely and overtly record the meeting if the recording is for personal use and you don’t need the NHS/IRP to grant approval that you may do this. NHS England are stating I can’t so wish to challenge them.

    • M.Wetherall 12 months ago

      Hi Jonathan,
      Good Luck is all I can say! We tried on numerous occasions to record meetings but were told quite bluntly that no recording could take place. If we attempted to record or did so covertly and later presented the recording then it would be regarded as inadmissible. They don’t take kindly to the use of laptop either to present your case. We encountered hostility when we used it to quote from the framework and case law. They don’t like being told their job!
      Perhaps others on this forum can actually tell us if it is lawful etc, but from experience asking to record the assessments didn’t go down well. I presented my case at IRP the old fashioned way….with my partner taking notes with pen and paper and the IRP coordinator recording notes on a laptop! The notes produced were accurate and reflective of the meeting. Hope this helps.

    • Tina 11 months ago

      Hi Jonthan,
      I also had this happen.I have very recently attended the Local appeal meeting and both Social services and the NHS representatives were both voiciferous in their refusal of my request to tape the meeting on my phone. I was told that I should have requested to this in writing.I asked where that information could be found but they could not, or would not, answer.I was told that the recording ‘ would not be admissable in court.’!! I never mentioned Court,so I am wondering what made them say that. I’m sure that I have read that you can record but not film on Nhs premises, but unfortunately cannot remember where I read It. Maybe you have found something?
      Good luck with your own fight.

    • Mark Edgecombe 11 months ago

      Yes, you can record any meetings. According to section 36 of the Data Protection Act provides for anyone to record such meetings under the ‘domestic purposes’ exemption as long as it is for your personal use. The NHS have no right to deem it ‘inadmissible’. You can send an email to the Information Commissioners Office (ICO) to confirm this in writing and then put it under the nose of the NHS. It helps, of course, if you have both Lasting Powers of Attorney. I have openly and covertly recorded such meetings and made direct quotes from transcripts and recordings at subsequent IRPs.

      • Jonathan Comley 11 months ago

        Mark you are correct (I discovered the same provision in the DP Act lately too). There is also another law that permits the very same action of overtly recording for personal use – the Investigatory Powers Act 2016. And to Tina’s comment there is recent legal precedent (in Civil proceedings) that permits the use of audio recording for personal use being permitted in the courts even without the subjects consent i.e. if the evidence clearly shows intent or actual illigality…it is admissible. NHS England though (even after presenting all the above to them) still are unlawfully declining in my case (they must be worried or hiding somehting or both) so to avoid the possibility of them cancelling or delaying the IRP I have noted their position (with objection for future action) and decided to bring and Advocate along who happens to be a qualified stenographer (i.e someone who takes full meeting notes – often in court settings etc.).

  10. M.Wetherall 12 months ago

    This is very much in line with what my IRP letter back in April says:
    “You are welcome to bring a partner, friend,relative or other advocate to the meeeting. If the person you bring is a legal advocate you need to be aware that the panel will not consider any legal challenges to either the eligibility criteria or the responsibilities of the NHS. Anyone who speaks for you should restrict their comments to statements about Mr. ********* Needs and descriptions of the process followed by the CCG. There is NO Role for legal professionals at the Independent Review Panel and therefore any costs incurred will not be reimbursed by the NHS.
    I attended with my partner and presented my case to the panel.
    If you are confident and have done your homework then it is possible, just as Admiral Mathias has said.
    It took over 16 weeks to get the decision and the IRP have found the case UNSOUND. They have said my late father was 100% eligible for fully funded NHS CHC from the 1st Assessment.
    That’s very welcome news! But not the end of our fight to have my late father’s fees refunded.
    A very long and protracted 2 years of my father being Fast tracked and then funding withdrawn and then fast tracked again have resulted in a mess of appeals and reviews and more reviews!!!!
    I am now awaiting a response from CCG in response to the damning report from IRP. They have 14 days to reply!
    I expect there to be further appeals, reviews and challenges and quite possibly another IRP…..this should take up another 2 or 3 years and waste a lot of more of public money but now I have our CHC/CCG on the rack I am energised and ready to fight on.
    At the beginning of this year the thought of an IRP was overwhelming. I spent hours and hours doing my homework and making sure the case for dad could be proven.
    My homework focused on the Key Indicators and that is where the Panel at IRP agreed.
    I was pleasantly surprised at the panel for my IRP. They were sympathetic to the loss of my father and overall I was happy with the way the panel questioned me and allowed me to speak.
    Just unfortunate that they made me sit next to the CHC assessor who had been involved in the decision making and with whom I had previous heated arguments!!!
    Hope this helps others about to face an IRP. It isnt necessary to have a legal representative present your case. It just takes confidence and knowledge of the NF for CHC and to be able to apply that to your case.
    Good luck and again I am indebted to CTBD, because without this website and the knowledge and experience provided by others already having gone through this , I would have struggled to put my case eloquently and effectively!

    • Care to be Different 12 months ago

      Thank you for your lovely comments Michelle. Kind regards

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