How to stand your ground in NHS Continuing Healthcare – 11 tips

How to stand your ground in NHS Continuing Healthcare – 11 tips

Stand your ground in NHS Continuing Healthcare

Show confidence during the NHS Continuing Healthcare assessment process

Are you feeling daunted at the prospect of an NHS Continuing Healthcare assessment for your relative? Not sure how to handle the questions and statements you may hear from the assessors?

As the many comments from families on our website show, the Continuing Healthcare process is not always easy. Indeed, it can often be adversarial.

Being well prepared and as well informed as you can be in advance can help a lot.

11 tips to help you stay confident and stand your ground in NHS Continuing Healthcare

1. Know the guidelines

Read the NHS Continuing Healthcare assessment guidelines – most importantly the Checklist, the Decision Support Tool and the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care. Get familiar with how things should be done, and keep detailed notes on anything that has not been done correctly so far. Make sure you also understand the different stages of the assessment and appeal process.

2. Know your position

Familiarise yourself with the eligibility criteria in the Checklist and the Decision Support Tool. Make sure you know what scores your relative should genuinely receive and what the outcome should be. If anyone tries to trivialise your relative’s needs during an assessment, counter it immediately and make sure your objection is written in the assessment notes.

3. Gather evidence

This is the job of the assessment team; however, you also need to be proactive here. Make sure you look in advance at the daily care notes and the care plan from the care provider/care home. Make sure the contents are both comprehensive and accurate. If they’re not, complain to the care provider, and also make sure the NHS Continuing Healthcare assessors are aware that the notes are inadequate and/or misleading. If your relative sees other specialists, clinicians, therapists, etc., get hold of their evidence concerning your relative’s care needs and risks. This could, for example, be a letter from each one summarising your relative’s health and care needs. BUT – and this is really important – make sure you explain to them why such evidence is needed, otherwise they may write something that is not fit for the Continuing Healthcare process and that may inadvertently play down your relative’s needs.

4. Gauge the assessor’s position

Assessors may have been thrown in the deep end and told to carry out an assessment with very little, if any, training in the Continuing Healthcare process and in care funding law. Never assume the assessor knows more than you. If you follow the first three steps here, you may know more than they do. For this reason, never simply assume that what an assessor tells you is correct. You’ll know whether it is or not from all your reading, and from reading this website. Other assessors may be more experienced in the Continuing Healthcare process, and yet time and time again we hear of flawed practice by assessors who seem intent on denying funding regardless.

5. Be open

If you’re going to record the meeting, tell the assessors you’re going to do so. And then record it. It protects everyone in the room to have a word-for-word account, and there can then be no dispute about who said what.

6. Take the lead

Tell the assessors what you expect, i.e. that you expect the assessment to be carried out according to ALL established guidelines, in line with ALL relevant case law and in line with ALL relevant care funding legislation. Make sure the assessors are under no illusion that you are well informed and aware of the rules.

7. Interview the assessors

Ask each assessor in the room what his or her role is in your relative’s assessment process. Also ask them why they are at this particular meeting and what experience they have in Continuing Healthcare assessments and, most importantly, how well they know the person they are assessing, i.e. your relative. You have every right to know who everyone is and why they are there.

8. Ask for clarification and reference points

Whenever an assessor makes an assumption, makes a statement or says something you disagree with, ask for clarification. Ask them for the evidence or a reference that supports what they are saying. For example, if an assessor dismisses the Coughlan case, ask them immediately where exactly in the guidelines it says that this landmark legal case is not relevant. In this particular example, they won’t be able to. Do this for every point you disagree with. (There may of course be instances where the assessor is correct, but stay on your toes so that nothing slips through that wrongly undermines your case.)

9. Take someone with you

This is good for moral support, even if your friend or supporter doesn’t know all that much about Continuing Healthcare. An extra pair of ears and eyes, and someone else to make notes is a valuable thing. The person you take with you can also ask questions. Out of courtesy, and to avoid any arguments at the start of the meeting, let the assessors know in advance who is coming with you.

10. Stay calm

Even if you don’t feel like it, it helps to maintain a calm and businesslike demeanor throughout. Keep your body language and posture confident too. It can be very hard when you’re having to talk formally about someone you love, especially if they are at the end of their life; keep going as best you can.

11. Drink water

Keep drinking water throughout, to keep yourself alert and refreshed.

Ebook: How To Get The NHS To Pay For CareYou’ll find lots more tips and advice about NHS Continuing Healthcare assessments in our book, How To Get The NHS To Pay For Care.

Do you have any additional tips that cold help someone in an NHS Continuing Healthcare assessment?


  1. Diane Langdon 11 months ago

    We have just attended a CHC assessment which was unsuccessful. What we were NOT prepared for was being told that the assessment was only based on the last 12 weeks. When we questioned why as mother had at least 25 falls over a five year period since being diagnosed with vascular dementia, we were told that was not relevant. After we got a copy of the assessment we realise now we have been wasting our time as she will probably never meet the criteria as it is very rigid and the NHS Framework seems to be in their favour 100%. I asked the difference between NHS Framework and Law but nobody seemed to be able to answer.

  2. Ann Provan 2 years ago

    My mum was fast tracked in November and we have been approached again to complete another review, we have already spent many hours in earlier MDT meetings that failed by poor reporting by firstly the hospital and now the care home recently.
    My mum is in palliative care and is slowly deteriorating, barely eating and extremely frail, bless her heart she has Edema building in many areas of her body with pooling blisters that make it hard for her to be moved and cared for, with other chronic conditions Asmath COPD, AF. Possible cancer of the endometrial lining , and has a dibilitating cough every day particularly on drinking and eating, in the past year has been hospitalised with pneumonia, fall that broke 4 ribs and requireddrains into her lungs, 3 weeks later a stroke losing power to her right leg and arm, with dysphasia.
    Once entering the care home she is now fully bedbound, doubly incontinent and although stabilised in the first month her weight and BMI have reduced to around 17BMI and a weight of 47 kg. Thy agree it is hard to have at true reading because of the build up of fluid.
    We were amazed to be told our mother was clinical Fit, although they are unable to take blood for testing and the health needs are being managed. We continue with the CHC meeting on Tuesday.
    Any advice would be most gratefully received.

    • Care to be Different 2 years ago

      Hi Ann – We would be happy to talk this through with you if you’d like to get in touch via In the meantime there is a lot of useful information on the site and have you see our book? Kind regards

  3. Caroline 3 years ago

    We have a Local Appeal due soon. The CCG has prepared a ‘Needs Portrait’ based on my mother’s hospital records. I too have a copy of her records, so I can see key words or phrases have been omitted to paint a rosier picture. For example, “Multidisciplinary Team (MDT) recommends 24 hr nursing care” has become “MDT recommends 24 hr care”. In one item referenced, the hospital records include, “needing all care” and “needs to be fed”, but these are omitted from the Needs Portrait summary note. Another of the many examples is, “Patient wheeled into physio gym in supportive chair; patient then hoisted into a standard chair” being summarised as “Attended gym with physio”.
    I’ve complained to the CCG about this and have been told the Needs Portrait will not be changed. Should the CCG be allowed to use this document at the Local Appeal?

  4. Angela Sherman 4 years ago

    Angela – the statement by the social worker abut the Fast Track only being for people with six weeks to live is nonsense. There is no such stipulation. Well done for standing your ground and challenging what didn’t seem right. Great news about the funding recommendation; the decision making panel should only overturn that if there re exceptional circumstances:

  5. Angela 4 years ago

    Thanks so much for your help with this. I told Dad he didn’t have to disclose his pension, which he refused. Mum went into respite care while Dad was in hospital. She got pneumonia in there and has really gone downhill all the way since then. That’s what they were wanting to claim back, not going forward. She will have to pay a small amount which we knew. She wanted to pin us down more financially, but we just breezed her off.

    Thanks to your book and your blog ( recommended by my cousin who went through the same nightmare last year ) , I took notes in today’s meeting. Most of it was ok. When it differed from what I knew was procedure, I made a note. The Consultant came in at one point and said she is no longer having treatment for myeloma, as basically the chemo would kill her, so he’s giving her 6 months more or less. I asked if it could be fast tracked and the social worker said no, that was for if you only had 6 weeks.

    We got to the end of the form, section eleven. I said hold on, isn’t there another one ? She looked at me, not very happy, and said yes, other. Like what ? I said “she has now been given a prognosis of 6 months, they have stopped myeloma treatment, her para protein levels will rise, her pain will increase dramatically and her confusion etc will increase dramatically too. Her pain medication will need careful monitoring , It’s the whole thing. The little boxes don’t describe the whole situation, it’s just a snapshot now, but she will get worse day by day. ” she wrote all this down and said how would you mark it, so I said severe. I don’t know if this will influence things, but I felt better it was written down.

    Anyway, final upshot, after much arguing on each point, they are recommending her to go into a nursing home and get full NHS Continuing Care ! She said it would take about a week and they might turn it down though. How often do they turn it down after it has been recommended by a hospital? Even if they do, I feel prepared to appeal, with all the notes I took.

  6. Jean 4 years ago

    I have a claim is for my late mother who passed away in 2008. My application for retrospective CHC was to be handled by a neighbouring CCG (initially submitted in 2012) but due to a backlog, was transferred to my local CCG. I shudder to think when I would have been notified of the change had I not pursued the situation personally. The only letters I received from the neighbouring CCG were to notify me they had moved offices, twice!

    I’m not sure how an assessment could have been carried out by an MDT, or indeed if that was practicable, but I received a copy of the DST on 23 July and have an appointment with the Assessment Panel on 9 August. GP and HR(?) documents are referred to, but the care home where my mother lived was unable to provide care records. It looks as if it may be my word against the Panel’s when it comes to assessing my mother’s need for CHC. What a shame care homes aren’t required to keep records for longer.

    Reading the social workers’ notes it looks like they’ve all used templates to complete their reports (my mother had at least three “Care Managers”), and I’m daunted by the prospect of facing this Panel without a great deal of time to prepare.

    • Angela Sherman 4 years ago

      Jean – I’m sure many families can relate to what you’re saying about having to chase things up and be the person that keeps tabs on things. It shouldn’t be like that, of course, but sadly it often seems to be the case. When you go to the meeting, keep in mind that the NHS must be able to show clearly whether your mother’s care funding was – or was not – their responsibility. A lack of available notes does not mean the NHS can simply throw the case out. Similarly, the local authority must take a view about whether or not your mother needs were within their legal remit.

  7. Stephen Squires 4 years ago

    If the review panel claim that they are applying their ‘National Framework’ to determine funding ask them to point out where it mentions that patients can be required to meet their own care costs. Then tell them the Judge said in the Booker case that the National Framework contains no mention that patients can be required to meet the cost of their care. This is the sole responsibility of the NHS where there is a primary health need which is simply that a patient requires 24/7 access to care services.
    Note that ‘Residential’ and ‘Nursing’ homes have been abolished: They are now ALL ‘Care homes’. Also no assessment panel or clinician can lawfully determine the right to receive NHS funded care as that is entirely a matter of law, not medical opinion and clinicians and social workers cannot arbitrate questions of law. They can determine what care, where and by whom it should be provided – but not who should pay for it.
    Insist that at any review panel it is minuted that all deliberations and conclusions will comply with the law, including relevant case law, and the NHS Constitution.

  8. Shelley 4 years ago

    I am a little confused as we have gone through the Checklist and had a DST Assesment on my parent and now I am being invited to go along to the NHS Continuing Healthcare Panel. Should I be aware of anything as they do say that during the final deliberation we have to leave the room, please could you give me any advice what would be useful.
    Thank you

    • Angela Sherman 4 years ago

      Hi Shelley – did you go to the full multidisciplinary team (MDT) meeting (where the DST was completed)? This is the meeting where the funding recommendation is made, and that funding recommendation is then put to a Clinical Commissioning Group (CCG) decision making panel. The CCG panel decision is usually made without the relatives present, but the Checklist and MDT meeting must include involvement and input from the family and/or the person’s representatives. There is nothing, as far as I’m aware, that requires you to leave the room while the members of the MDT deliberate on their recommendation. Regarding making your case, the above tips will help, and be sure to read the guidelines and funding criteria thoroughly, so that you can pull together all the various points to support your case.

  9. Steve Squires 4 years ago

    It is helpful to show any review panel a copy of ‘Pamsday’ which I prepared in cooperation with Pam Coughlan, and which details her daily care regime. [Ed: This link may be helpful:]]

  10. Annette 4 years ago

    This is especially for john Garner: Showing confidence in your case for full funding is to really FEEL confidence in what you are saying. You know better than anyone how your loved one is, especially if you
    visit often and especially if you visit daily. Nurses who pop in for a few minutes or only read the notes written up by care assistants don’t know as much as you do, and if they say untrue things STAND UP to them. You could get somebody to visit your loved one with you at meal times, so that they can see the true picture. Read Angela’s excellent book several times so that you know you have a good case. If possible get somebody to go with you to any meetings and ensure that they have read the book too. Don’t feel bullied. You have right on your side, nurses don’t. They follow the established line. I was told I would never get full funding for my husband but I managed it, just by being confident and repeatedly telling them about the Coughlan Case
    and reminding them that it is CASE LAW. In my case, I told them to view the video of Pam Coughlan which is available on a computer. Even if you haven’t got a computer yourself and can’t view it, they all have access to computers and should see it. At my two meetings I discovered that they did not know about this case, but said they would see the video. Those who had previously told me I would not get full funding changed their minds and eventually they have paid for my husband to have his care home fees paid.
    It is absolutely possible to do it! They are wrong and you are right. READ Angela’s wonderful book, SEE the video, stand up to bullying, don’t give way to nurses telling lies!!! which is shocking in itself. Make sure everyone knows you will appeal every decision, and go to law if necessary, tell them that you know you will win eventually.

  11. Stephen Squires 4 years ago

    Just about everything you need to know is covered in ‘Community Care and the Law’ by Hugh Clements and Pauline Thompson. Please check Amazon for details, content. etc. It’s a massive tome and as its a reference book a local lending library will only let you read it on the premises – but take several packed lunches with you! Unfortunately it costs around £60! If you do manage to track it down make sure you have the latest (5th.) edition! Steve.

  12. Stephen Squires 4 years ago

    At the start of any review panel ask the Chairman to minute that the panel agree to apply the law and the NHS Constitution to all their deliberations and decisions. Point out that if they refuse to do so you will take legal action against the panel both individually and collectively if financial loss results through their failure to adhere to the patients statutory rights. Next remind the panel that they cannot refuse any patient the right to receive NHS funded care as that is a question of law, not medical opinion, and clinicians and social workers cannot arbitrate questions of law. Tell the panel that all patients having a primary health need – an illness, disability or injury – is entitled to receive NHS funded care ‘free at the point of need regardless of the ability to pay’. The ONLY qualification is that the patient requires 24/7 ACCESS to care services and this is upheld by case law and the law Society. Remind the panel that ‘care free at the point of need’ is NOT limited to a hospital or care home: it can be in a patients own home (re. the Pointon case) or that of a relative or carer or for that matter a garden shed or tent in a field! I will gladly provide details of relevant case law on request. Steve Squires. (Founder NHS Continuing Care Campaign)

    • Angela Sherman 4 years ago

      Thanks for your comment, Steve.

    • Mrs Chris Cox 3 years ago

      Hi Stephen
      I found your comment very interesting regarding asking the chairman to minute that the panel agree to apply the law and the NHS Constituation to all their deliberations and decisions. Please could you tell me in layman’s terms what this means? I am at the stage of awaiting an appointment for an appeal for retrospective funding for my late father who died in 2010. The retrospective funding team gave him 2 Highs. I scored him 3 x High, 3 x Moderate, 0 x Low and 2 x None.

  13. Penny Thorp 4 years ago

    I am helping a friend whose husband has dementia and is in a Nursing Home. The original CHC assessment was done by the MDT in October 2014 and up to a couple of months ago after I complained twice we had heard nothing ! My friend’s husband Ken was originally assessed by the MDT as meeting the eligibility criteria . He has since improved and now will not but the MDT felt that there was a period when he was eligible for funding. We have since heard that he has been turned down. I assume I could complain about the amount of time it has taken but I would only get an apology if I was lucky. What I need is the original MDT assessment. Do I have the right to have a copy?

    • Angela Sherman 4 years ago

      It’s more likely that your friend would have the right, as Ken’s spouse. If Ken has been paying care fees all this time, the local authority may have been in an illegal position if they have not properly considered his care needs vis-a-vis their legal remit. If you disagree with the outcome of the CHC process, you can appeal and request that the MDT process is repeated.

  14. Zoe Arkell 4 years ago

    Thank You, am going in to see mum today and will ask for a check list to be done.

  15. Zoe Arkell 4 years ago

    Please can you advise me what to do? My mum had a stroke and is in hospital, she can’t speak, is being risk fed a pureed diet, she’s immobile, and doesn’t have capacity. I’m being pressurised to move her into a Nursing home before any CHC assessment has been done. I myself am a registered Nurse and felt somewhat bullied by the discharge team today, they are telling me to find mum a Nursing home ASAP. Mum has been in hospital for almost 4 weeks now, I have lasting power of attorney, what shall I do?

  16. Jenny Johnson 4 years ago

    My partner’s Uncle is in a Nursing Home as his has vascular dementia. In August 2014 he was granted NHS Continuing Care. However on reassessment in May 2015 the funding was withdrawn and yesterday in 2016 again the funding was not granted. The assessors told me that originally he had been marked as Severe for behaviour and Severe for cognition and therefore met the criteria. However, as his dementia has progressed his behaviour has been marked down to a moderate and is no longer considered to be challenging. In my opinion this is largely because of the actions the nursing home are taking and also because he spends a large amount of time asleep due to the medication given to him at night and of course the progression of his dementia. He was on Lorazepam but this has been reduced to PRN. They deem him to have more social health needs than nursing needs now. Surely this is wrong??? How can we appeal this decision? Your advice would be much appreciated.

  17. Theresa Montgomery 4 years ago

    Hi – my dad is eligible for Continuing Healthcare (CHC). He was evicted from emi dementia nursing home in November. We are battling contantly with CHC. They deny everything…and the care team in place are awfull. They are more interested in their phones and what they did last night. An incident recently, involving a carer, was reported to CHC and the carers office -basically we have to have this carer-4x a day whether we like it or not. He’s rude…he shouts at my dad and is cheeky to my 77yr old mum.. CHC are the pitts… Who can speak for us? We have applied for an Advocate, but on a waiting system. We need to act now. We don’t have power of attorney in place and we think they are trying to deliberate a crisis, so that dad is removed from our house. POA is constantly thrown at us and next of kin has no legal power.

    • Angela Sherman 4 years ago

      That sounds very distressing, Theresa. I have messaged you separately.

  18. Celia 4 years ago

    Hi, Many of the comments here seems to be about older people and getting Continuing Healthcare (CHC) funding. My partner is 30 years old and we have been trying to get CHC for nearly a year, with continued time wasting from the district Nurses and other agencies. My partner is bed bound and currently receives care 4 times a day to deal with her immediate needs, but due to the severity of her condition this is not enough. She is not weight bearing, and has excessive muscle wastage, we have had to fight to have a catheter fitted as she is both fecal and bladder incontinent. We have a hoist, and plenty of equipment, it’s such a shame that we don’t have the appropriate help to use these things at the time when they are most needed. To explain my partners condition, she has very, very severe M.E. which means any physical or mental activity causes extreme pain and fatigue, so all tasks have to be done at a slowly and appropriate pace with rest in between.
    We have been told that we were turned down for CHC because of the time it took the preparing team to actually put in for the request after getting all of the reports. So now we are back at stage one… back to collecting reports, more hospital appointments, more different services coming to the house, and probably a 4th Mental Health assessment, even though mental health has been ruled out 3 previous times in the past 2 years. Do I have a right to be at any meeting as Next or Kin and if requested by my partner even if these meetings are designated professionals only??
    Also the last time we put in for CHC we were told that we wouldn’t get it because there is no Mental health needs would this be correct?
    Any help and comments would be gratefully received. Thank you in advance for your support.

    • Angela Sherman 4 years ago

      Celia – the delays by the various care authorities should not penalise your partner – and they should most definitely not simply render her ineligible for Continuing Healthcare (CHC). It’s clear that no proper decision has been made. Yes, as your partner’s representative you should be invited to attend and input. This is set out clearly in the National Framework guidance. The information you were given about you partner not being eligible because she doesn’t have mental health needs is completely wrong. Sadly many people are given misinformation about the CHC process – and this would seem to be another example. At this point you could write to the Head of Adult Care at the local authority and remind him/her that the local authority is potentially acting illegally in failing to properly address whether or not your partner’s needs are within or beyond the local authority’s legal remit. This may help: and also this one: (Be sure to read the comments underneath that one, too.)

  19. vetty 4 years ago

    District nurses started applying for Continuing Healthcare funding for me last May. They submitted the form in Feb but it was sent back to them as they had taken too long and reports out of date. This is not the only concern – they do not know me or my condition or abilities or day to day life. It’s inaccurate. What can my next of kin do?

    • Christopher Gallagher 4 years ago

      First a Checklist should be done. Then a CHC assessment if the checklist shows sufficient needs exist.

      If this has not been done then the NHS has broken the law. If forms have been sent in out of time then I would suggest that it is hardly your fault and that the NHS needs to get a grip. There again, social services have a right and a need to get involved too. If you get social services involved, they must not simply assess your finances before they have ensured that a CHC assessment has been completed. I would ask that if successful, that CHC is backdated to the date of the original investigation by your district nurses….. That is assuming they actually did do something.

    • Angela Sherman 4 years ago

      Vetty – My question to the district nurses would be why did they take nine months to submit the forms? Your next of kin, as your representative (assuming you’re happy with that), should be involved and allowed to input into all assessments, to make sure nothing gets overlooked. Does he/she have power of attorney? If not, it’s worth getting that sorted as soon as possible:

  20. Paul Bristow 4 years ago

    Can someone give me some idea how long these assessments usually take? From all the points listed above, seems like it could be quite a long meeting, whereas I guess the assessors – even the good ones – would like to keep it quick and simple. (Wouldn’t we all? =:o\ )

    Full disclosure: I’m not involved in this process for anyone yet, but I can foresee a time when I might be.

    • Christopher Gallagher 4 years ago

      Paul, All afternoon in our case. Even then much was not said due to the lack of time. Then when complained about, we are told that three of four hours should be more than sufficient.
      I always later argue that as the cases are always designed to remove existing funding, then the matter takes longer because an analysis of previous DST’s and Independent Review Panel findings need to be considered too.
      It seldom gets heard at the local level but once an IRP chair sees the amount of unconsidered evidence in the form of reports etc. they usually start to lean in our direction. After all, the NHS is supposed to compile and consider any and all relevant reports……. How could the past DST’s not be relevant if they closely match the findings of the latest assessment?

    • Angela Sherman 4 years ago

      Paul – the full multidisciplinary team assessments can take several hours. If you do find yourself in this position, be alert to any attempts by assessors to cut the meeting short. They must review everything that needs reviewing and include all relevant input, even if it means it’s a lengthy meeting.

  21. Fiona Higgins 4 years ago

    My mother is in hospital after a fall and now a water infection. 2 weeks ago, before hospital, my mother was walking, reading, washing herself. Now she does not get out of bed, refuses the food and water and I am told she needs 24 hr care because apparently in the last 2 weeks she is now incontinent.
    I am under pressure to put her into a nursing home. I do not want this and my mother wants to come home yet are saying unsafe discharge and want us to pay £14.000 for 6 months care. Help.

  22. john 5 years ago

    My aunt is now in a care home following discharge from hospital diagnosed with vascular dementia. She is self funded with a 3 month disregard but is having to contribute to this as they say she is out of the county area?. Can i insist on on a breakdown of how they arrived at this? She was deemed not eligible for CHC but appears to have quickly deteriorated in the last month. Can I ask for another assessment?


    • Angela Sherman 4 years ago

      Yes, John, definitely ask for a CHC reassessment if your aunt has now deteriorated. Was she assessed for CHC prior to being discharged from hospital? This must happen under the Care Act. If you disagree with the previous CHC outcome you can appeal that, too. When you say she is ‘out of the county area’ do you mean you’re now dealing with a different local authority?

  23. John A Garner 5 years ago

    This is difficult for me. Yesterday at her assessment the duty nurse at the home sat in and in my opinion crucified my argument. She said that my wife could feed herself. That’s not true. She said that my wife could take drinks off her. That’s not true. She said she could operate the call bell. That’s not true. My wife is totally bed ridden and has slight movement in her left hand only. She can move her head and talk but this is difficult most times. Every day I go to see her and every day is different. I never what her condition will be. 2 days last week I could not wake her. The nurse it is because she is watching TV all night and is tired. I question this. My wife has no savings but does I suppose own half our house. I will have to get help with the next appeal as I am not capable to stand up at these assessment interviews. I do let them walk over me. My wife is registered partially blind and is 70% deaf. She has little speech and is confused I would say all of the time. The nurse also said she can make decisions. I really have to question this also. She gets tired very quickly.

  24. John A Garner 5 years ago

    My wife has been end of for 27 years and is in a nursing home.She I had an assessment to day regarding CHC and have been told she now not entitled. She has been receiving CHC since September 2012. Her condition is worse that it was then. Can you advise please

  25. Stuart Smith 5 years ago

    The single most important factor for me was being business-like, calm and well prepared. As Angela states, know the rules, procedures and assessment criteria and show the assessors that you know them. It’s not easy being calm when discussing a loved one in such clinical terms or if you’re not used to such meetings: put on an act if it helps! The NHS Framework is, at first, a daunting document to go through but there’s really no substitute for knowing it inside out. And have EVIDENCE: an opinion alone is easily dismissed.
    My Dad was initially refused funding , we appealed (I went armed with pages of notes and observations of errors which I insisted they went through,making the meeting much longer than they wanted), won an immediate re-assessment and were (re)awarded funding. We also had great support from the Care Home to provide medical/technical contribution: get them on your side too!
    It’s hard, time consuming and sometimes feels like hitting a brick wall but perseverance and thorough knowledge does pay off.

    • Angela Sherman 5 years ago

      Those are really good points, Stuart – thanks for sharing your feedback. I’m glad you had good support from the care home, too. That doesn’t always happen. Well done for persevering.

  26. Sue Taylor 5 years ago


    My Father has been in hospital for 7 weeks during which time we have continually asked for an assessment to be done but have been fobbed off time and time again. He is being discharged into a care home today and yesterday they finally did the assessment which came out at 1 A and 7 B’s so he qualifies to apply for funding. However my Mother received a call this morning from the head nurse saying he was much improved and washed his own face and cleaned his own teeth – this after 7 weeks of being bed-ridden and fed by nurses!! She said in view of this she needs to re-do the assessment and it will be social care he needs not health care, she said if we disagreed he would have to stay in hospital until the process is complete and probably lose the care home place. Obviously my Mother said she wants him released so he is going today but we are going to the meeting Thursday. Any advice will be welcome please.

    • Angela Sherman 5 years ago

      Hi Sue – what the head nurse has said sounds almost akin to blackmail. Eligibility for Continuing Healthcare funding does not hinge on whether or not a person can wash their face or clean their teeth. It makes me wonder if she has been told to say this by people with a financial motivation. Your father has had the Checklist and now he should be referred for the full multidisciplinary team assessment. Even if the Checklist were to be redone (and it doesn’t need to be) no one can predict the outcome without it actually taking place! If you father is discharged without things having been done properly, the NHS must pay for care until things are done properly. This may also help: Be sure to read the comments underneath, too.

      • Elaine 5 years ago

        Can I just start by saying how wonderful your website is! It’s like having a really knowledgable & caring friend, holding your hand through the trauma of fighting for the best care for loved ones! A million thank yous!!
        My situation is a little like Sue’s where my mum has had one day of improvement & the matron is trying to force her out to a care home before the reply to her Decision Support Tool (DST0 is back as she is in a short term rehab unit. Luckily another matron is on our side and said her one day improvement means nothing in the big scale of things, she is confident mum will get Continuing Healthcare (CHC) due to her scores but the social worker tells me to prepare for disappointment as you have to be ‘nearly dying’ to get CHC .
        I wonder if you can help me with my query. I told the social worker I wasn’t prepared to accept anything less than CHC for my mum. My concern is that if she is turned down for CHC, that standard nursing care in a home will not be good enough for someone who suffers from all her ailments plus daily vomiting & refusing to eat (lost 3 stone in four weeks). She says that nursing care is the same, just that we pay for the rest of the package (mum is over the financial threshold limits). I believe it isn’t, and on that basis I have said that if my mum doesn’t get it, I will bring her home and get private nurses as she will starve to death if left with just a nursing package in a private room in a care home. (I watched my dad die in a home with this package – so much neglect!) . She has said I won’t be allowed to do this because mum lacks mental capacity with regards to her safety. Is this right? (I will of course appeal any rejection for CHC but during this time, will I be forced to put mum in a care home if she is not allowed to come home, despite me offering to get private nurses plus me & my brother being with her all the time, helping with her care? (My brother lives there and I have always visited daily anyway).
        They want me to attend a ‘best interests’ meeting to discuss her capacity as mum says she wants to go home but has no understanding of what that means for her safety. They want me to sign something to confirm this, have I the right to say I will only do this if she gets the CHC, will this affect my right to bring her home if turned down?
        They are also really pressing me to fill in the financial form. I have told him I don’t have access to mums banking and they asked me to try and get her password out of her!! I have refused to do this as don’t see the point if we have to bring her home (her financial status means she won’t qualify for carers at home if turned down for CHC).
        Just as another point, they have said there will be no ‘discretionary disregard’ of her home, despite my 55 yr old brother living there All his adult life, caring for them over years of ops and ailments. Then both of us giving up high profile jobs 5 years ago to care for my dad who had dementia and after he passed, continuing to look after mum, resulting in suffering great financial and personal loss but compensating it by thinking at least my brother would have their home to always live in – nothing is safe anymore!
        Any advice on being allowed to bring her home whilst waiting for appeal after being turned down for CHC would be greatly appreciated. Thanks.

        • Angela Sherman 4 years ago

          Thanks for your very kind words, Elaine. I’m so glad the site is helpful. The hospital cannot legally discharge your mum without a Continuing Healthcare (CHC) assessment: The social worker is misleading you by telling you a person has to be ‘nearly dying’ to get CHC. Sadly that’s very typical. The CHC process also informs the care plan, and wherever your mum is placed for care (whether that’s at home or elsewhere), her needs must be addressed. Again, this doesn’t always happen, but it’s part of the purpose of the CHC assessment process. Your mum’s money has nothing to do with the outcome of a CHC assessment. It also sounds as though the social worker doesn’t understand the Mental Capacity Act. This will help: The lack of knowledge amongst many health and social care ‘professionals’ is shocking. Don’t sign any financial forms until you’re happy the CHC process has been conducted properly and then only if your mum does genuinely have to pay for her care. She can also just choose to pay – without disclosing her financial affairs. Their attempts to get you to find out her password could be seen as attempted fraud. If the house is also your brother’s home, then it cannot necessarily be included in any means test.

        • Christopher Gallagher 4 years ago

          Elaine, The council has a legal duty to ensure that if they accept care or if the NHS refuses CHC funding, that the care required is within their legal remit to provide. Someone three miles from deaths door is probably still to ill to fall within the remit of the council. Have a look at Look up the ‘Pen Portrait’ of Ms Coughlan’s needs on page 22. The council was told by a judge that her care needs were beyond their remit to provide for.

Leave a reply

Your email address will not be published. Required fields are marked *


2100 characters max. All comments are moderated in line with our Acceptable Use Policy and our Terms of Website Use.