NHS Continuing Healthcare solicitor in office

Do you need help with your case from an NHS Continuing Healthcare solicitor?

You’ll find heaps of useful free information and resources on our website to help you with NHS Continuing Healthcare.

At the same time, doing battle with an ICB over NHS Continuing Healthcare funding can be frustrating and exhausting – not to mention daunting at times. It’s understandable that you might need help from an NHS Continuing Healthcare solicitor – someone on your side to fight the battle for you.

Having a specialist to help you with your individual case can be invaluable – and can save you a huge amount of time and stress.

Read the Continuing Healthcare eligibility criteria before you part with any money

However, if you need expert help to fight your case, then consider Farley Dwek Solicitors Ltd, a specialist family firm, who understand the law inside out and have been helping families throughout England and Wales. Farley Dwek have a wealth of expertise, knowledge and success in this particular arena – acting for families whose relatives are currently going through the assessment process, and/or acting retrospectively to recover care fees wrongly paid. The two Directors of Farley Dwek are also Directors of the company that owns this free resource website. Care To Be Different was a natural fit with the ethos of Farley Dwek Solicitors, who campaign nationwide to bring the deficiencies in the NHS Continuing Healthcare funding process into the public domain. They were the first solicitors to produce a FREE Guide, entitled “Care Funding Issues” which you can download; plus get more free resources and information on their website, where you can access their monthly newsletters, blogs, FAQs and case studies.

You can email details of your enquiry to enquiries@farleydwek.com.

If it seems unlikely that you’ll be eligible for NHS Continuing Healthcare, they’ll tell you straight away. In addition, even if they don’t think they can help you with Continuing Healthcare, they can give you some general advice about care funding.

Andrew Farley, Director at Farley Dwek, adds:

“This initial free conversation is of course just a first opinion, based on a short conversation we have with you. If it does look like there may be a chance of success for you with NHS Continuing Healthcare, we can outline the various ways we may be able to help further. Never pay anyone a lot of money without having at least discussed your case with them briefly first. It’s also a good idea to read through the Continuing Healthcare eligibility criteria yourself before you part with any money.”

As NHS Continuing Healthcare solicitors, Farley Dwek have a team of specialist nurses, who have worked with ICBs and know what needs to be done to present a strong case. They can attend NHS Continuing Healthcare assessments with you, support you with advocacy and be on your side each step of the way.

So, whether you’re at the start of the process for a relative, or you are stuck in the appeal system, or you are making a retrospective care fees claim, Farley Dwek can help you.

And because they’re specialists, with many years of hands-on practical experience acting for families in this way – and in dealing with funding assessors and decision makers – they understand what’s needed during assessment meetings, to challenge mistakes and misinformation.

Depending on the circumstances of your case and the likelihood of success, they may also be able to offer you a no win no fee agreement. This is where they take all the financial risk to fight your case, and you pay them an agreed amount afterwards – but only if you’re successful.

As leading experts in this field, Farley Dwek Solicitors are often quoted in the national press, have appeared on BBC radio, and were featured on BBC’s Victoria Derbyshire Show.

Read what Farley Dwek’s clients say about their exceptional service:

I cannot recommend the team at Farley Dwek highly enough. Their expertise in this area is second to none. We were saved a fortune in fees, which lifted the financial burden so that you can focus on what matters… caring for your loved one. The knowledge and passion in which the nurse assessor defended us throughout the NHS meetings won’t ever be forgotten.” Read more…

Should you also need help with wills, finances, trusts or powers of attorney at any point, you’re welcome to talk to them about that too.

Find out more about Farley Dwek here.

10 comment(s) need to be approved.
113 replies
    • Care to be Different says:

      Hi Andrew
      Please feel free to call us and we will discuss with you how we might be able to help and costs involved. Kind regards

  1. Maria Walsh says:

    My problem is that I don’t have PoA for my mother. She is 87 and now severely incapacitated following a Stroke. She has been in hospital since Sept and is about to be transferred to a Nursing Home 28 day assessment bed for CHC. Having reviewed the Checklist and DST I’m convinced she should qualify. I’m trying to obtain her hospital medical records, but as I don’t have PoA they won’t give them to me. (Incidentally I have also made a formal complaint against the hospital for a serious fall she sustained whilst she was left alone – which she never should have been.)
    How do I argue from a legal standpoint on a “Best Interests” argument?
    I understand that applying for a Court of Protection could cost up to a £1,000, and take ages.

    Also, if I don’t have Court of Protection, PoA or a Best Interest argument how can they possibly take money from my mother’s account if they do turn down the CHC funding and say she is Self Funding? She has no capacity to agree to access to her bank account. So how would they obtain payments?

  2. Peter S says:

    So this is so true. My father was awarded CHC funding last year and we have just been through the annual review and despite the reviewer never having met my father. Totally failing to listen to anything the family said (or be prepared to change his ratings) we have dropped from1 Severe & 5 highs to 1 Severe and 4 Highs. This is where despite having caused physical harm to the carers he reduced the rating on Behaviour from High to Moderate. So at the end he said he is recommending for a full DST review again. This seems to go completely against the Framework which states “It is expected that in the majority of cases there will be no need to reassess for eligibility.” and in the next section 204 “Where there is clear evidence of a change in needs to *such an extent* that it may impact on the individual’s eligibility for NHS Continuing Healthcare, then the ICB should arrange a full reassessment of eligibility for NHS Continuing Healthcare.” It now means a lot more work for ourselves as well as the work the council needs to do. This has got to be financial gatekeeping. Again which is against the framework. Is there anyway that this ‘review’ recommendation can challenged before we get to a full review as it was literally the opinion of 1 person who has never met me or my father or the nursing home staff before.
    Thanks for any input.


    • Care to be Different says:

      Peter – thanks for sharing this. If you would like some help in anticipation of the net MDT please contact us. 0161 979 0430 Kind regards

      • Peter S says:

        Thanks, I take it then I can’t challenge the review then we just have to let the DST proceed again?

        Also what happens to the Nurse assessors recommendation on a review. Is that ‘reviewed’ by anyone else or is their word gospel that it goes to a full review again?

    • Sam says:

      Hi Peter,
      I had similar issues for my father everytime we went through the annual review. One of the issues is that the national framework has very little information about the actual review process. In our reviews they did meet my father except for when it was in the pandemic. The assessors report – which you should have a copy of is sent to panel. You have the opportunity to include a written statement in that report sharing your views. We used to ask to see a copy of the report before it went to panel so we could see what they wrote – which was often different from what was verbally said in the meeting. Its all about evidence – I’m not sure if they keep a record of your fathers behaviour ( they had to for my father on an hourly basis) so I used to go through all the records so I had evidence of hitting etc. I did not have the experience of the assessor asking for a full DST again – we had situations where the scores were changed despite no change in my fathers needs. It is helpful to get input from other medical professionals who may be able to write support for a particular score in a domain. They sent different assessors each year so there was no continuity and ultimately it is the subjective opinion of the assessor. I would also find out who is the CHC manager – who the assessor reports to and communicate with them. Wish you best of luck

  3. Linda says:


    I had an application for CHC funding turned down at the start of the year for my Mum who is in advanced stages of dementia – the CH Assessment determined she only qualified for the nursing part of the funding. At the time she was living at home. Mum’s condition has worsened significantly and she now needs to go to a home – obviously the first thing that is being assessed is my parents finances, no-one has mentioned anything about a new Assessment – should one be carried out again now that she is moving to a care home? And how long after moving to a care home should the assessment be done?

    We are having our finances absolutely scrutinized in detail. I separated my parents joint accounts in to 2 separate named accounts some months ago in readiness for this. I have also made an adjustment for any significant historical costs incurred from the joint account for supporting my mother’s health needs and ‘repaid’ 50% back these to my father’s account – so that my mother has paid 100% of all costs relating to supporting her – but it seems the council won’t accept this, which seems very unfair for my Dad. Has anyone done this before and what was your outcome with your council?


    • Ngi says:

      CHC is not means tested , so need declare assets if your Mother subsequently screens in . .
      If you know your Mums assets are over £23250 why complete a statement ? Unless she is near the £23250?
      If your Mum owns a house that can be disregarded in certain circumstances ?
      There are many questions!
      Get good guidance , its worth it in my view

  4. Victoria says:

    Good Morning everyone

    I need help to solve a problem and hold someone accountable! I’ll try to keep it short & simple but it’s no. My Mum was sctioned under Section 3. She had to be discharged because they said they had new patients coming in which would make her “more vunerable” They did the CHC Checklist.
    This was done without my knowledge or input even though I hold LPA.
    Said Mum had no capacity yet she consented, took part etc
    They said she had moderate risks of falls yet all other assessments she is said to have a high risk of falls (just came out yesterday from hospital and ended up with bleed on brain)
    Her score was 1A (in priority) 7 B’s 3C’s (If done correctly is shoudld have been 3 A’s because of the TIA which scores an A, Ntrition was a C although she has dysphigia which is an A)
    The Assessor states Refer to DST as does the Council’s assesor.
    No DST done as “Mum does not meet the criteria” SW states same and Mum has no nursing needs. She is 93, has advanced dementia, diabetes, chronic kidney disease, blood pressure. etc. Couple of months ago I was told she was at end of life but she is a tough and rallied round. The hospital also gave her Covid which made her dementia go out of control.
    And on top of that she was suppose to be given a specialist home (stated by everyone) but they had not registered on the Councils system as they were pretty new. Instead gave her a category 2 home (stated she needed Cat 3 on several occasions) with not a nurse in sight|!
    Asked to move her to a home with more facilities based on first home but they are refusing. They have never given me a choice of homes despite legislation which says they must.
    Thank you.
    Missed out on Vacant episodes (TIA’s) so C score when should have been B (she has been hospitalized because of this)

  5. Tracy O'Neill says:

    My son has had three non-compliant CHC assessments (all at appeal) and a health review and has been contributing approx.
    £375 per month to the carehome for social care/accommodation since before the CHC process was even started. There is a
    “joint funding” agreement in force even though his admitted health allocation comes to more than £4000/wk. Clearly well over
    the incidental:ancillary limit and 1:1 14 hours a day increasing to 2:1 44 hours a week in the community. Now the carehome is
    billing us for an amount which represents over 25% increase because the council have increased my son’s contribution,
    without even stating why such a large amount or justifying it. Having been kicked out of two carehomes we are worried about
    the implications of us refusing to pay the increased amount from our son’s income. The carehome have confirmed that their
    charges haven’t increased and say that it we pay at the old rate then then swirl have to make up the difference. We continually top
    up our son’s money from our account for transport, activities, clothes, football season ticket, bedding, toiletries etc. Please advise!!
    Thank you.

  6. Ann bee says:

    Would like some info regarding my fathers care he is 96 in care home and has been self funding until the present time, having problems with paperwork etc.

  7. pils says:

    Are we required by law to have a CHC assessment via Microsoft TEAMs?
    Specifically when none of the ‘team’ have met the one requiring assessment.
    Our LA is pushing CHC without, I believe, due consultation. (e.g. telling us anything).

    • Steph Barnett says:

      Yes, Teams is the way that GGC are conducting assessments due to Covid. You must be invited to be present online, contact CCG and remind them it is a requirement under the framework if you are excluded (I was initially). The way to prepare, is to get the book from this site, download the checklist and the framework, using the care home plan and your own observations and make your own checklist. Then see how it tallies with the GGC assessor. Then if you disagree, speak up!

  8. Nigel says:

    Mental Capacity Assessments

    My Mother is CHC funded by challenging in 2013. She has severe Altzeimhers, she does not have the capacity to understand most matters (Generalisation comment by me)
    Day to day decisions are made by the home and covered by their capacity assessments. Which they periodically undertake and are kept on her file at the home.
    At reviews the CCG have little regard for capacity assessments, in fact no regard at times. A CHC review is not a daily decision that can be covered by a capacity assessment by the home. It’s a very important matter. My view is that it has to be time and decision specific assessment to capacity for that review? A decision could be challenged and a robust process needs to be in place and evidenced. What is the experience to mental capacity assessments by CCG’s before an assessment?

    Sharing information
    I have also found the CCG have no regard to Best Interest decisions about information sharing.
    I do NOT hold a Lasting Power of Attorney, Health and Welfare. (Finance only)
    Are CCGs generally noting and providing copies of Best Interest decisions when a person does not have capacity .
    What is the definition of information sharing?
    Between departments within a CCG or only if information is being shared to outside agencies?

  9. Ian McClymont says:

    Has anyone been granted funding using a Dementia Plus Care home which is a home for dementia patients with more complex needs that EMI nursing cannot meet?

  10. Sarah says:

    Hi you are an amazing resource for families. Can you help with a young adult (20yrs) who is just about to be assessed gir eligibility for CHC funding? He’s currently at independent specialist college doing 2nd yr of a 3 Year life skills course. Living at home with a SC package of care which funds his PA at weekends and during holidays and overnight care every 2nd week

    SW says he meets criteria for CHC assessment but doesn’t think he’ll get 100% funding she sees my son one a year if that and had no idea of the level of his needs since she likes to write her report about what he can do not what he needs help to achieve. I want to be prepared going into the initial meeting with the CHC assessor and then at the DST.

    CAN care to get different help and guide me or are you specifically for elderly?

  11. Angela Donnelly says:

    Has anyone appealed the decision after being turned down for funding and gone on to win their case, especially anyone in Essex. We have an appeal pending with the Independent Review Panel. I am told we need to use certain wording and phrases. Does anyone have any tips as to what the wording should be.

    • Care to be Different says:

      Hi Angela – We support people through this process every day. Please contact us and we will happily advise whether we feel able to assist you. Kind regards 0161 979 0430

    • E J Foxall says:

      You can win if you use the system against them. Few follow the NHS guidelines which are national ans the Regions are not allowed to amend them.
      During the six years my wife’s time we had a annual battle and won.
      My advice is make sure you follow the rules. Get all the records. You do not need power of attorney for Health.
      You are not questioning the Heath. Don’t waste time arguing the diagnosis you purely looking at the Financial effects.
      On that basis power of attorney for finance is sufficient.
      Claim all costs but accept some will not be allowed. 95% of costs is a good result especially if 5% was speculative.
      Finally don’t give in. Stick it out you don’t need expensive legal support. But by all means take free advice (Pro bono) good luck be determined nicely.

  12. Helen Coombes says:

    My mum was fast tracked from hospital to a nursing home. Continuing care are funding this for three months. The nursing home are asking me, as I have PoA, to sign their terms and conditions which include responsibility for their £1250 fee per week. Do I have to sign this document?

  13. Sarah Kemp says:

    My 87 year old Dad has Parkinson’s Disease amongst several other illnesses, and he has qualified for CHC funding for 20 hours a week. He also has County Council funding for 10 hours a week. All this is in a PHB
    He has to contribute £130 a week towards his County Council funding (they contribute £70 a week). We are actually thinking that it may be more cost effective for my Dad to turn down the County Council funding and just pay the additional expenditure himself, which would be £85 a week. But our fear is that if we turn down County Council funding, when he deteriorates, we may regret doing so and we would have to start the whole assessment processes again. Of course we could just stick with CHC and apply for additional funding that way when he needs change.
    Any advice much appreciated

  14. Diane Ludkin says:

    I have recently given details regarding my Father who has Vascular Dementia and has paid in excess of £100,00 over the last 27 months. A NHS continuous Care Assessment has been completed but my Father has been awarded £165.00 Nursing subsidary from the NHS. He has enough money to pay for 1 month (July £3,440) as my Father has been Self Subsidised for 27 months. They have told us this £165.00 is paid on top of the months fees….is this correct?. A Financial Assessment has been conducted……but according to these providers there is a ‘backlog’….so we wait. Also while the Social Care Kicks in (his funds are just below £23,250) they have told the Family that we need to keep paying my Fathers Care Fees and that we will be reimbursed at a later date…..is this correct? We do not know how long this transition period will take from being Self-Subsidised to the Council paying his fees.

    • Care to be Different says:

      Hi Diane – the administrative wheels turn very slowly. In the meantime have you considered looking into retrospectively reviewing the period when your father was self-funding to see if he may be entitled to reimbursement for some or all of the fess paid during that period? Do call us if you would like to discuss this. Kind regards 0161 979 0430

      • Diane says:

        Thank you for your prompt reply. I certainly will look into the reimbursement of his fees.
        How would I initially go about reimbursement as the Care Home he is in is a Private Care Home ‘Country Court Care’ of which they have many in and around the Country.
        Many Thanks

  15. sarah says:

    my mum has been assesed and has been told she will need to go into a care home . this was a week ago but we are not being informed on any plans all we have been told is there is a funding issue so she is remaining in a hospital bed. she has terminal cancer that has gone from lung to her brain and cervix possibly more so does not have long left. should she be kept hanging when she possibly has only weeks to live ? and will we get the opportunity to select the care/nursing home she gets put into? thank you for any help

  16. rachel says:

    My local authority have told us that we have to pay a top up for any of the council run beds in the nursing homes my Dad has to be transferred into. He is being transferred from psychiatric hospital after recently being sectioned on 2 and now 3. I was told that because “the S117 funding in (where we live) is funded by the local authority” we have to pay a top up. Is this correct? I have read that it is not permissible for the LA to even ask for a top up for 117. We are new to it so would be great for any comment. Thank you

    • Janet says:

      Hi Rachel , we are in exactly the same position it is very frustrating as reading all the information it clearly reads under a 117 the local authorities pay the full cost between themselves and the NHS.
      Our problem is that the social services say we are reading the mental health act 2014 to suit our needs but the nursing home agree with us that we do not pay . Hitting a brick wall or probably already hit it as I have now agreed to ” top up ” even though I feel this is totally wrong.
      Have you got anywhere with this

  17. Mandy Jones says:

    My mum has been refused twice for CHC. She has advanced Alzheimer’s and has been in a care home for over 5 years. She is immobile (they use a hoist to move her and she is propped up in a chair by cushions, she is doubly incontinent, has pressure sores regularly, can not communicate (can’t speak, has no memory), she does sometimes smile. She is fed by staff (puréed) and has some issues swallowing at times. She now spends half the day in bed. Despite deteriorating this last year since her first CHC assessment, they have scored her as a moderate in terms of communication(but last time was high). This is impossible and makes me doubt the whole validity of the process. I’m appealing but I cannot attend meetings as I live and work abroad. So I will phone in which i know is not ideal. Please advise whether you think we have a chance of succeeding?

    • Care to be Different says:

      Mandy – so sorry to hear this. Please get in touch with us – we can assist you through the process. 0161 979 0430 Kind regards

  18. Richard Murphy says:

    My mother-in-law is in a care home and has been for several years now – she sold her home to pay for her care and her funds have almost run out. She was assessed for continuing health care and ruled as not eligible. She suffers from a whole variety of problems as follows:- Cervical Spondylosis affecting her shoulders and arms, a charcot foot with open hole wound in the bottom of her foot, Asthma, blind in one eye, previous twisted hernia and bowel perforation, dementia, impaired cognitive status, mixed parotid tumour, Atrial Fibrillation and depression. She sometimes has reduced association to the risks around her environment, reduced awareness of time, date and place. Whilst in a previous home in respite care and prior to going in to full time care she almost died due to the twisted hernia resulting in the bowel perforation requiring emergency surgery. She takes numerous medication including antipsychotic, antihypertensives, diuretics, antidepressants, analgesics and a Seretide inhaler. With her dementia she can sometimes appear perfectly lucid and on other occasions talks complete nonsense. She has episodes of confusion and disorientation and has a history of both auditory and visual hallucinations. She is at high risk of malnutrition due to her dementia and needs meal fortification. She is unable to carry out her personal and intimate care due to mobility and her dementia. She has a history of ulcers on her lower left leg and her Waterlow score shows very high risk.
    In the previous home she was in she had a history of hospital visits (at least 4) having been found unconscious due mainly to dehydration and mismanagement of her diet/bowel problem. Since being in her current home she is well looked after and has had no hospital visits.
    Social services are trying to move my mother-in-law out of the home because they will now be taking over payments as she has reached her threshold and they say the homes fees are too high. My wife and myself want her to stay in this home because she has had no problems there and they take very good care of her. More importantly having been through the NHS continuing healthcare check list we feel that she should have a reassessment and she would qualify – our view is that she would score 5 B’s with one of them possibly being an A.
    Please advise on what we should do.

    • Care to be Different says:

      Hi Richard – thanks for your post. If you would like to get in touch with us we would be delighted to see if we are able to assist. Please call us on 0161 979 0430 Kind regards

  19. Mary de Sousa says:

    My mother has just completed her 3rd checklist assessment this time in a temporary care home after a fall and with two people, only one of whom had met her for 20 minutes the previous day and her social worker. At the meeting it became clear the care home had failed to adequately record my mother’s behaviour, something mentioned by the assessment team themselves who reprimanded the nurse. My mother was marked each day as ‘settled’ whereas one of the great problems of her care is unpredictable aggression. In addition the nurse from the care home left the meeting three times, struggled to understand the questions asked of her because of language differences and the mental health nurse the assessment team had recommended be there was not present. Is this sufficient to appeal?

  20. Lesley Jeffries says:

    Hi, we have just had a the DST meeting for my mother in law. There were 3 people that formed the MDT non of which had met my mother in law until half an hour before hand. One was a social worker, one was a clinical lead and the other was a very new nurse. I questioned the fact that none of them had had anything to do with my mother in law whilst she has been in the hospital or the ward she is now on. The clinical lead said this was the way they did things and that she all the notes etc for my mother in law. Eventually they asked a nurse off the ward my mother in law is on to come to the meeting. This poor nurse seemed very uneasy but did sit in and give some answers where she could. About 3/4 of an hour in to the meeting the ward nurse was called away, but the DST was finished without her. I am very annoyed about this as I don’t feel anyone knew my mother in laws needs in any degree that they could have give a true decision. The decision went against recieving CHC but we have to now await the CCG decision before appealing.

  21. Patricia Wood says:

    CHC was withdrawn Sept 2018 from my Father after he had been receiving it for more than a year. He had advanced Parkinsons and Lewy Body Dementia – both deteriorating naturally – yet the inspector said that his condition was now “manageable”. Two weeks later his Nursing Home advised they could not meet Dad’s needs and so he was brought home (where I might add his care improved beyond belief). I am appealing the CHC decision but still waiting for the local resolution stage – how long does this drag on? My father passed away meanwhile, and although we had managed to get a checklist completed for eligibility for a new CHC assessment, the checklist never left the desk of Social Services due to incompetence and lack of follow up, so we were denied the chance to have a re-assessment.
    I will not give up with the appeal but shocked at how long it is taking to even get to local resolution stage.

    • Peter Oliver says:

      If you do as I did, to shorten waiting time, I would threat the CCG in writing that if you do not hear from them in two weeks about a local resilution meeting date, you will be esclating to NHS England due to the unaccepatble and unjustified delay. And then do that.

    • Lizzie says:

      Hi Patricia My dad was turned down for chc aug 2017 after receiving 3 mnths fasttrack. I have a LRP meeting on Friday and am certain we will have to go to IRP. Sadly dad died November 2018. I am still carrying on with appeal because of the lies and non adherence to procedure. Good luck

      • Care to be Different says:

        Hi Lizzie – good luck with the fight. If you would like to chat it through with someone please do get in touch. Kind regards

    • Mrs carol shaw says:

      I am so sorry to hear of your plight and sorry you lost your father amongst your attempting to get what they qualify for…no doubt.
      I thought if they were end stage they received chc …it’s cruel .I know what you have endured I am now in a similar position with my husband of 73 with Parkinson’s and LB Dementia and no chc …but how can they send them home ,?

  22. Barbara says:


    • Peter Oliver says:

      Hi Barbara,
      I find your story appalling.
      I fought for my father care funding for many months before he died two weeks ago. It was a long ongoing battle, as they kept reviewing him and removing funding. In the process I have learned a lot about the ordeal sick people are put through. And a lot about the system.
      Also, continuing healthcare is a postcode lottery. What is your health authority? I was shocked to see that people from a different borough who where staying in the same care home where dad was for a while before going back home were funded by their health authority, and they were more able and less sick than dad. That motivated me to appeal.
      Just see what scams certain health authorities carry out to avoid doing checklists altogether: https://www.hsj.co.uk/policy-and-regulation/ccg-accused-of-using-flawed-test-to-cut-spending-on-elderly/7024053.article
      I have just searched for continuing healthcare postcode lottery and found this article with latest statistics https://www.zodiaccare.co.uk/2019/02/10/nhs-continuing-healthcare-postcode-lottery/
      You should continue with your appeal. I do not think there is much difference between the pre and post October 2018 system. The DST is essentially the same. The only advantage of the new system is in my view the clear statement that care can be provided and paid for wherever it is carried out: own home, residential home, or nursing home. Your dad’s case seems to be the current exercise of NHS cutting their budget against the rules.
      This system is all a big mess. But from experience, the system can be beaten. My dad’s grandchildren will have now their university paid with the money he saved for the purpose.

      • Barbara says:

        Dear Peter
        Thank you so much for taking the time to respond and for your useful links. It is reassuring to know that I am not the only one feeling as though the carpet is being whipped from under my feet. All I have asked for is a fair process. The fresh DST has just been undertaken by the new CCG (so as to ensure it is an independent reassessment) and I don’t yet have their verdict. Given that we had been deemed eligible for funding up until the August 2018, I will certainly appeal if the answer is negative after this fresh review. Thank you again, and I’ll report on the verdict for everyone’s benefit. Regards, Barbara

  23. Lynn says:

    Do you have an idiots guide to appealing the loss of CHC funding. Some of the terms they use on their forms are to say the lease ambiguous. I give as an example:

    Key Indicator: Nature.

    What do they mean, the nature of my mother or the nature of her illness?

  24. Alison Briscoe says:

    What do others think of the following ? No NHS assessment has been made yet but various professionals have been dismissive of any possibility of continuing healthcare funding . My questions are as follows

    If someone has need for continual supervision to avoid injury due to falls as their dementia makes them unsteady and forget their stick and have anticoagulant treatment and osteoporosis is that a ‘healthcare need ? What about encouragement to eat being social care ? (she cannot even make a cup of tea in any circumstances and wont eat unless encouraged and supervised and gets undernourished. How about cognitive function, my mum knows who we are but forgets where she is, her way around and what she was just told moments ago even information to avoid injury ? How about complex medication need reminding and supervision ? observation for signs of imbalance that can be dangerous that she cannot herself manage frequent wandering with the risk of falls as outlined supervision a health need or personal care/ social care ?
    Are these type of needs at all within ambit of continuing healthcare so that doing the checklist is worth it ?
    I’ve been told if the person can manage the toilet once in there, does not get aggressive and knows who we are ( it is said this represents good function) there is no potential case for continuing healthcare Also it is said that unless nurses are involved it cannot be healthcare needs being met .

  25. Sarah says:

    I just wondered if anyone has some basic advice here. I do intend to speak with Farley Solicitors, I am just at the start of this process & have read so much on this site, my plan was to get to the second stage assessment and then contact a solicitor (from what I have read here re other experiences)
    Father in hospital, stroke, he has capacity though, paralysis on left side leg and arm, (couldn’t swallow but now can), speech slurred but he is mentally capable, incontinent due to paralysis, has to be lifted by a hoist, metastasised prostate cancer that’s now in the bones, one particular tumour in the spine causing pain, osteo arthritis, diabetes the list goes on.
    I understand that diagnoses of illness doesn’t mean anything its more based on your capability to do what’s on that continuing healthcare assessment sheet.
    We were asked to a ‘meeting’ where his condition and discharge was discussed, I asked re the Continuing Care Assessment & found out they had done one with no family member or advocate present that they then said oh ignore that it was done wrong. When I said I wanted another one done, as per all stories here, was told not necessary, won’t change outcome. I insisted. They did one. He got 5 B’s which meant he should go to the next assessment, ward manager told me they would send it off to request this.
    I went home only to be told by my Father that the doctor who had said it wouldn’t change the outcome came back after when he was alone & with another doctor reduced the B’s to C’s so he doesn’t now pass to send it to the second assessment. Matron then very unkindly told my mother that my father was bed blocking. I am going to appeal this, but I am waiting for copies of the second one which they are SLOW (1 week now) producing….
    Today my mother had a call from a social worker re a meeting to discuss care homes. When my mother explained the situation and said we were in the assessment process and were appealing the social worker said we HAD to have the meeting anyway. My question is DO WE?, how can we discuss care homes and discharge when we are still in dispute over this assessment?
    I was hoping to get some response back from the assessment panel at least and then refer to Farley.
    Can anyone in the interim help me with that social worker meeting question as thy want it this week.
    Thanks 🙂

    • Care to be Different says:

      Hi Sarah – I do not know why they don’t explain all of this to families it’s stressful enough isn’t it. However the issue of funding is separate from the issue of where your father’s care needs will be provided going forward so I do not see any issue with this meeting proceeding and there is no reason to delay it. Kind regards

      • Sarah says:

        Thank you very much for reply. As we have so many issues I am contacting Farley Dwek for advice. From our families point of view the illness is the LEAST stressful part of it. Sadly its the lies and nastiness surrounding the care that’s the issue and from reading here we are not alone…..

  26. Cara says:

    My mother was assessed for CHC in May and as the assessors disagreed whether she was eligible or not we were told it would ‘go to the Panel for final decision’. We are still awaiting that decision and have chased the social worker several times who just says it is still under consideration. In the meantime the financial officer from the council has been demanding financial information and has said my mother’s current funding will be withdrawn if it is not provided in a couple of weeks time. We were under the impression (from the ebook via this website) that financial information cannot be demanded until a decision has been made in respect of CHC. Can you tell me if this is correct, and if so, what regulation or other authority supports this? Many thanks

    • Care to be Different says:

      Hi Cara – you have every right to insist that the Local Authority awaits the outcome of the Panel decision. You can assure them that all relevant financial information will be disclosed when appropriate once the CHC decision has been communicated to you.

      • Cara says:

        Many thanks for your response. The individual from the local authority is particularly difficult to deal with so the more ammunition I have the better – can you point me to the specific piece of legislation or other regulation which specifies this? Is it para 105 of the National Framework, or something else/additional?

    • Care to be Different says:

      Hi Cara – there is no way that the Local Authority should be demanding financial information form you when the CHC decision is awaited – as they well know. I would dig your heels in until after the decision has been received. Kind regards

  27. pamela robson says:

    My daughter age 52 was successful in starting to receive CHC funding in April 2018.
    she lives in her own rented apartment and has 24/7 care. She also has extra care (double ups) for going out into the community and for personal care. The weekends are the problem. She has a care provider when she changed from LA funding to CHC funding the same amount of hrs needed were transferred over via her care plan however, this is not enough to take her out at the weekends which she needs to do for family visits and activities although it is enough for personal care she gets depressed if she is not able to go out. The CCG have not done a 3 month visit. although in their letter at the start of this they said they would.
    Do we have the right to contact CCG and ask for the increased funding for double ups at weekends? As you can imagine the cost of her care is already huge, and I am wondering if it would cause problems if I or care provider approaches CCG to ask for more?

  28. Marie Howlett says:

    Question from Marie: We have just gone through an IRP and my daughter was found eligible for CHC. NHS England have notified the local CCG but they refuse to grant CHC as they say that the IRP report is flawed as the panel recommended that some sort of Joint Funding should be put in place to ensure continuity. NHS England have now suggested we go through another IRP in another area of the country! What would be the point when the CCG can just refuse to honour the decision of the IRP? I have no idea how to proceed as I thought once we had got to this stage it would be straightforward however even NHS England are amazed.

  29. E J Foxall says:

    Hello Lynn, if you have power of attorney attorney the answer is yes and even if you haven’t if you don’t ask you won’t get. I’m not sure you have a right without power of attorney for health.
    However if they are being used to deny you funding the answer is yes because that is a financial decision and you are entitled to all information used to deny funding.
    Go for it and argue firmly that you are entitled

  30. Lynn Taylor says:

    Hi can I request a copy of mums medical notes and also those from the rehab unit she has been in for the last 5 weeks since discharge from hospital before any planning meeting takes place ?

  31. E J Foxall says:

    Hello Sally,
    The password protection statement is obviously nonsense.
    It is upto the CHC administration to provide copies of al DST forms including the CCG,s panel decisions, including who attended. Names are sometimes an issue but you are entitled to know which individuals attended the panel.
    Start to have a go at asking the individuals to explain the reasons for their decision.

      • Jenette says:

        This is actually a data protection issue.What has happened to the SW email account now they have left?The DST counts as a healthcare record.It has to be kept secure and for good reason.It cannot remain on a personal work email unavailable for anyone else to view.Check all data protection rules and the new GDPR and use any literature to complain to the Governance Officer.Their IT dept should be able to obtain access to it. If you have to then request a Subject Access Request (SAR) you should get all information including emails etc on your relative.They have to comply with this request within 40 days after which you have the right to complain to the Information Commissioners Office.Alternatively complain to the highest, Director or Chief Executive and quote the Data Protection Act specifically in the subject matter.

  32. E J Foxall says:

    Sally – Please remember that all CHC and CCG employees are governed by the Civil Service Code of Conduct. If they are outside the code then they can be personally responsible for their own actions.
    You should not have to take this route as long before it reaches that position somebody within the service should want to stop the nonsense and resolve the issues.

    • Sally Bracey says:

      Well they obviously don’t care much, my assessor ignored every legal requirement, and didn’t explain, when I asked him to show me how he had been Coughlan compliant, he practically ran out of the room, planning to appeal, that’s why I’m trying to get the paperwork he wouldn’t give to me before the MDT, luckily I recorded the whole MDT, although I had to fight him to be able to, interestingly he didn’t want a copy

      • Jenette says:

        They will ignore any legal requirements even a SAR because they are not accountable to anyone and they want to get away with paying CHC only to those who “shout” the loudest and go to the highest with the complaint.They ignored a letter written by our solicitor ( not Farley)They would never get away with any of this withholding of information in the private financial sector hence the risk of expensive litigation.There appears to be no risk with CHC. They can even withhold 1000 of documents under a SAR, believe me they did with a feeble excuse. Apparently “some ” documents were unavailable and when eventually disclosed turned out to be nearly 2000s worth .They will ignore requests until made to disclose by someone else. Even a Governance Officer dealing with data protection was useless.You have to keep going however frustrated you get with the response or lack of it.

        • Sally Bracey says:

          They’re now saying that the old DST is password protected and they can’t access it, so I just listened to the SW saying that she has a full copy of DST on my recording of the MDT

    • Sally Bracey says:

      So now I’ve been told the paperwork is password protected and the person has left, but listening to my recording I clearly hear the SW say she has the previous DST in front of her. So lies!

  33. E J Foxall says:

    Sally – If you have a general power of attorney you are entitled to copies of all the DST documents together with any other documents that the CHC are using to arrive at their decisions.
    You can ask for copies under the release of information law.

    You can also write to the OMBUDSMAN and tell them that the CCG or staff under their control are deliberately frustrating your attempts to secure a fair and reasonable settlement of your love ones case.
    My advice is to also copy your MP and ask him to approach the minister of Health on your behalf.

    Also copy Mr Simon Stevens at NHS headquarters in London and request that he look into the reason why they will not release the information that you are entitled to.

    If you don’t get any sensible information within 14 days send a copy of your request for information start sending copies to the national press.

    Once you start don’t stop until your have all the information you require to make your case

  34. Beth says:

    Hi. My Mum (aged 50) and is in the Advanced Stages of Huntington’s Disease. In February my Dad, who was her main carer at our family home in South Wales, suddenly passed away. I am now her main carer (aged 26) but live and work in Manchester. After careful consideration I have decided to apply for CHC funding and move my Mum to Manchester. However, I am unsure where to go to for support, advice and help with this battle? Our DST meeting is on Monday and I still don’t know who my care co-ordinator is and I am phoning round to request medical reports from Speech and Language Therapists and dieticians. Not to mention being pestered for a financial assessment from social services. Fortunately I’ve read Angela’s book and had some great tips. Could anybody recommend anyone else to speak to or read/watch? Any help would be greatly appreciated!!!

  35. lizzie says:

    I am still going through appeal process and dad is also due a new assessment in the near future. Another resident at dads care home was turned down last week for the 3rd time for funding. the assessor said because his needs were well managed he didn’t qualify. the social worker attending the meeting said she wasn’t allowed to say such things because the underlying needs were still there and it was against National Framework. The assessor responded that her hands were tied because it was the CCG rules. How can assessors still say this and get away with it?

    Also for anyone about to go through an assessment I advise you to check all the care home records including care plans carers notes medication charts – in fact everything you can get your hands on. For Dad’s appeal I have found all sorts of evidence to support his claim. It’s also a good idea to keep a diary of your visits and how your relative was on that day eg.hallucinations , any marks on body, slurred speech, confusion etc. I have found on comparing my daily notes with homes it looks like we are dealing with 2 different people. insist on regular meetings to compare and review so they have accurate info to look at. Hope this helps someone.

    • E J Foxall says:

      Lizzie, they shouldn’t as CCG is making it’s own rules. It is quite clear that the framework is a national guideline to be used by all ccg’s in England.

      What you have been told is tantermount to “misfeasance in public office “.

      Tell the C C G person you seriously considering instructing your solicitors to bring a Misfeasance Clam against her personally because she does not neither does the CCG have the Authority to amend the National Framework Agreement or the .N H S guidance lines for the implementation of the Framework.

      Also tell them you do not make threats only promises that you have a firm intention to implement. Give them 14 days to respond from the date of your letter. Date and post it recorded delivery on Friday midday.

      Sit back and only respond to written communications.

      If Someone phones tell them to put it in writing.

      This approach may not be very pleasant but they will perhaps not try it on again

  36. james says:

    Is anyone able to explain why on DST it is stated 24 hr nursing care is required but turned my Mom down for funding?

    • Care To Be Different says:

      Hi James – if 24 hour Nursing Care is required and if your mum is in a Nursing Home she should be entitled to FNC which is £158.18 per week. It does not automatically entitle her to full CHC Funding. Kind regards

  37. David says:

    We’re at an early stage – Mum [with Parkinsons Dementia] is in hospital two weeks after hip fracture operation after a fall, but making little progress in re-gaining previous mobility and reduced cognition etc.

    The first pre-discharge ‘best interests’ meeting with the social worker nurse at the hospital suggested that if return to home wasn’t viable (it isn’t) then their recommended choice for Mum’s current and likely future needs [if not a short stay in rehab] would be a place in a nursing home.

    Does such a recommendation (i.e. nursing home rather than just care home) by definition mean that CHC funding would be granted?

    In other words, is it possible for someone be in a nursing home and, after going through the checklist/assessment, NOT qualify for continuing healthcare funding? Does being in a nursing home and recommended for such by the hospital discharge system by definition mean that it is ‘health needs’ are primary and not ‘social care’ needs? It would seem logically to do so, but we’re not sure. Thanks

  38. E J Foxall says:

    I have lodged three appeals 2013, 2015 & 2018 al have been successful and NHS Continuing Healthcare paid together with restitution of costs. Had the Decision Support Tool (DST) followed the NHS guidlines and proscribed processes then none would have been needed. The process is broken. This worry every year is very wearing and although it has affected my own health I am still determined and will not give to the divergences and I await countering the next set of errors next year. We have countered [the CCG] as a family and produced written statements on each occasion.
    You can do it yourself but it takes hard work and perseverance. Read the Framework, mark your + & – points, then read the DST processes as set out in the Official instructions. You won’t have to trip the assessors up they will do it themselves. Write all your arguements down and compose your written submission in detail. Put it all in, expect them to knock some points down but, stick to the major points that alter the DST score. Don’t let them combine parts of their description where it says ‘or’; ask which dictionary definition of ‘or’ they are using. You are only interested the normal interpretation of the meaning of words. When they start with medical definitions you don’t understand say so, make them explain the meaning. Even if you know make them explain in plain English. It stop them trying to bamboozle ordinary people.
    If this helps just one person then I am pleased and ready for next year.

    • Jenette says:

      Thank you for your support ..Are you able to elaborate what appeals you needed to get the right decision. What do you do if 2 Severes are agreed but funding still denied. Surely if domains are agreed then what is the point of an Independent Review Panel or the Ombudsman.Used dictionary on everything, especially the word dressing, it is what it says to dress in outdoor clothes. So a bedbound patient does not engage in that daily activity. What they do have is a change of “night clothes” to keep clean so it could be both social and health. This is just one example, we have many others we can prove are health not social needs. I am an “ordinary” person who has just got clever so not to be bamboozled!!

  39. James says:

    My dad is just about to be assessed for NHS Continuing Healthcare (CHC) funding and the assessor seemed hopeful. I noticed his current private care home contract says that if a contribution to care home funds is made, e.g. CHC (explicitly named) then we are responsible for the shortfall. Is this legally enforceable given advice I’ve seen on this website?

    • E J Foxall says:

      If your dad is awarded NHS Continuing Healthcare (CHC) funding, all his costs should be met by the NHS there should not be a shortfall. Be careful they will try to award Funded Nursing Care. This only covers 2 hours per day of nursing cost and will fall wellshort of acrual nursing home cost. Appeal if your case is good. Don’t accept that the assessors are on your side or fair and reasonable. Be sure you are right and stick to your guns. Ask which dictionary they are using. The normal everyday usage of words is correct. Good luck you should win at stage 2.

  40. E J Foxall says:

    I persisted and have won reinstatement and restitution of funding for my wife. This is what should have happened in the first place instead of all the stress and worry bt the rules not being followed. My advice is stick up for your loved ones rights and don’t be put off by their interpretation of the rules. Good luck.

  41. Tony Hurman says:

    Hello, i will try to keep this short as there has been a catalogue of what i believe are errors. In June 2016 my mother was admitted after having a massive stroke on the left hand side of her brain causing her to lose the use of her right arm and leg, also affecting her speech (only says yes, no and goody goody). Several capacity tests have been done, the last in March last year. The hospital were keen to move her due to issues at the hospital, but we managed to get an assessment done before she was moved (October 2016). Unfortunately due to incompetence by both the NHS and Local Authority she was not picked up until November 2017, subsequently leading to a negative decision being made last week. some of the issues include discharge form not completed properly, an illegal capacity test done and admitted by a doctor, being fobbed off by adult social care when I tried to make contact between Jan 2017 and Mar 2017, given the wrong number to follow up my mother’s physio, where they had failed to fill out. I don`t want to involve a solicitor, however this is feeling like I may need to. Can any of my listed failures help with someone stepping up to do the right thing. I am already putting an appeal together after receiving the decision this morning by post.

    • andrew farley says:

      Hi Tony – we have supported many families who have been through this process to successfully appeal decisions which have gone against them. If you would like to talk to us please do not hesitate to call us. Regards Andrew Farley – Farley Dwek 0161 272 5222

  42. E J Foxall says:

    Very slowly we move forward, today I received copies of the Decision Support Tool (DST) 02-2017 and DST 02-2018. Now I can look at what the assessor looked a because at least its listed and proves what she didn’t look at. Wish me good hunting at the beginning of the long slog for the third time. They have offered a meeting,(date to be agreed). I’ll keep you posted.

    • Andrew says:

      The process can be very daunting but don’t give up. If you have the tenacity and the needs are there then push ahead. If you need any support with it we do offer a free initial consultation on the phone. Kind regards Andrew Farley Farley Dwek

    • Sally says:

      How did you get them to give you the DST copies, I have never had any paperwork despite my mum being on CHC for three years

  43. Lizzie says:

    Settled myself down in the garden the other day with Angela Sherman’s book, all dads medical record and the Decision Support Tool (DST) completed at assessment and the decision papers. I have written and scored a new DST myself after reading in detail how the criteria should be applied.It has really helped me to focus on what is important. Now awaiting a local review. On the original assessment it was stated by them dad need 24 hr nursing care and on the CCG decision doc it was stated by CCG dad needed 24 hr nursing care, and they still turned him down. Is it me or are these people just not on the same wavelength?.

    • Andrew says:

      Hi Lizzie – the fact that someone has nursing needs does not unfortunately automatically qualify them for NHS Continuing Healthcare Funding. If you need any assistance with the appeal process please do not hesitate to get in touch with us. Remember that there is only one further right to appeal after local resolution – to NHS England. Kind regards Andrew Farley, Farley Dwek.

  44. Barbara Hughes says:

    We have just been declined for a second time by the Independent Review Panel (IRP) for retrospective funding for our late mother.

    Despite being scored as 1 severe need, 3 high needs, 4 moderate needs and 2 low and one mo need.

    2 of these scores were changed from high to moderate, as they say that, as mum was so sleepy and spent long periods of time in bed following her return to the care home after suffering a stroke, that there was less risk than previously.

    They dismissed the fact that the hospital found mum to be severely underweight and referred her to the hospital dietician, as they say, whilst she was underweight, she was stable.

    Everything we argued regarding her needs was dismissed, as the bottom line for them was, all of her needs could be met by the home, without the need for any additional input.

    They say her needs were not medical, just social .

    The IRP were extremely critical of the CCG and Continuing Healthcare for the failings in following the National Framework.

    The errors and lack of compliance are shocking, but still, the IRP upheld the decision to decline mum.

    We now have to take our case to the Ombudsman as the IRP will not take the matter any further.

    We do not know where we stand, we are convinced that mum should have qualified, but, it keeps coming back to whether her needs are medical or purely social.

    Any advice please

  45. E J Foxall says:

    Watch out for vexatious time scales. ’10 days or we will consider you do not wish to continue.’ Arrived Saturday, 2 days lost. Return post 2 days lost, solicitors to access archive and produce another certified copy of Preparation Of Attorney, write letter and post 4 days. Add another weekend 2 days. Just possible if everybody involved drops everything. I did not find this time scale anywhere in the guidelines. Another ‘let’s make it difficult for challenging the process’, which in itself was not carried out correctly in the first place. Why do I get annoyed, this is only the third time. I should be used to it by now. They will not wear me down. I’ll keep you all posted.

    • Jennie says:

      Ignore it as it is rather ridiculous when you consider they took 6 months to get paperwork to NHS England for an Independent Review Panel (IRP), then they say “we are currently unable to provide you with a date for an IRP. When then, response ,no idea?? “No timescales there then. Worn down and hanging on in there.

  46. Joyce Parkes says:

    My husband Richard has nitrofurantoin induced fibrosis of the lungs, has severe heart problems, he is badly brain damaged and suffers from severe bladder infections all from negligence at our local hospital. Richard needs constant care he is incontinent and has communication difficulties. I have been trying to get NHS Continuing Healthcare for over three years now. I feel angry that I have to pay for carers when it was the fault of the hospital the way he is.

  47. EJ Foxall says:

    I was in touch with you some 3 years ago and your advice helped me to win Continuing Healthcare. This award has continued until this current assessment. My wife is now toward the end of her journey, the ftd is now much worse and she requires continuinous supervision and nursing supervision. She is now bedridden 24/7 but the assessor decided that her funding should be withdrawn. She said that she would recommend Nursing Care only, an obvious cost saving. I seem to remember that there are precedents set in the past that indicated ftd is a genetic disorder and should be funded. Where can I find these precedents please. I am running out of thr ability fight them yet again.

  48. Lizzie says:

    I amazed at the amount of lying going on by the assessors. My father was admitted to hospital last april following a bad fall. Five weeks later he was granted NHS Continuing Healthcare (CHC) and moved to a care home. After the initial 12 weeks he was reassessed and the funding withdrawn. We are still battling with the CCG over this. When I read the Decision Support Tool (DST) I couldn’t believe the lies they told to reduce his scores. Dad is 87 is bedbound, doubly incontinent and can become aggressive when receiving personal care.
    He doesn’t know what’s going on and is unable to use a call bell or even shout out for help. The staff have been wonderful with him and between us we have managed his food and drink levels. He has a special mattress because of bedsores and he has to be checked every hour by staff. He is unable to understand simple instructions and has no coordination. There are problems giving him medication and sometimes I have to give it to him. he also has hallucinations and has had several TIA’s. He is on a DNR plan . He still has all the needs but they are being managed by the home and his family. The assessors even pointed out he hadn’t fallen since he’d been in the home , not mentioning he is bedbound and can no longer walk .After 6 months the CCG are now asking for more information to review the case. Every time I call they say the person I need to speak to is on holiday and so on. I have started to complain to anyone I can think of because their attitude is appalling. I am hoping they will review the case by the end of this month and then at least I will be able to log a formal appeal if necessary.

    • Jenine says:

      I agree ! Think about looking at the care plans. Our relative similarly bed bound had all their care plans completed by a registered nurse including washing and dressing since as they were only able to have bedbaths .It was written to say these were necessary to prevent skin infections. There is nothing social about a bed bath !! ..and 24 hour care including hourly through the night.The National Framework refers to healthcare as planned , supervised by a reg nurse in addition to care given by a reg nurse.The same doctrine applies, managed needs are still needs .Sounds to me if there are high needs in communication, mobility and nutrition and contrary to how Decision Support Tools (DSTs) are written you may need only one key factor , here intensity to be eligible. Also look at the local authority limits. If the amount of care the majority of the time relates to health needs then it will exceed the incidental limit. Have a look at the Coughlan case to see how the boundaries of eligibility are now set too high. And whatever you do don’t give up otherwise the more cases people give up leads to more and more coverups, inaccuracies and downright false accounts of needs provided on these DSTs. There is such a lack of accountablility you have to push very hard to succeed. We have found the more eligible your relative appears to be will result in cherrypicking of the care notes to try and prove the opposite.

    • Lizzie says:

      My dads case has been reviewed by the CCG at last. they didn’t tell me they were going to have the meeting and took 2 weeks to let me know the decision. Prior to the meeting they contacted dads care home to ask them to confirm the scores they gave him in July but relating to his condition now. They have later denied this. Be warned- most communications have been by phone. Get them to put everything in writing and you do the same. then there can be no doubt. The staff they spoke to at the home were not present at the original assessment in July and are not qualified to agree scores in the Decision Support Tool (DST). I am now in process of going to the independent review panel. in the meantime I have arranged to have an independent assessor to do a new assessment of dads condition using the DST. This I hope will set the basis for any further assessments and reviews. At least next time I know what I’m going in to. I was naïve this time thinking they would be looking after dads interests. What an eye opener!
      To all of you out there going through this please keep going and get as much info as you can from the professionals. I have been amazed in the last 4 weeks just how much info is out there and it has given me the confidence to carry on. I’ve got my mojo back so heaven help them!!!!!!

  49. E J Foxall says:

    My wife has ftd (picks disease) and I need to locate previous precidents where funding was approved. I understand NHS Continuing Healthcare Funding was paid on appeal for ftd on a number of occasions in the past.
    The GEM assessor had never met her before spent less than 2 minutes with her and deciding funding should be withdrawn .
    Sitting on her own she trawled the care home records and filled the Decision Support Tool (DST) form on her computer before the meeting started. She did not discuss the reasons for her decisions with the meeting merely informed us what she had decided and invited everyone to agree with her decisions.
    She informed me that I did not have any say in her decisions and the families could not be involved in the final assessment.
    To my knowledge she did not look at ALL the care home records available. The accident log and the records of submissions to the safeguarding board in 2018 were not viewed as far as I am aware because they were not in the files she had.
    These records demonstrate that the risks have increased not reduced as alleged.
    The meeting was a blatant attempt to reduce cost because the CCG has major financial problems.
    I look forward to any help and advice you can provide.
    My health issues include cardiac, diabetes 2, CCL, arthritis, dropped foot amongst other problems.
    Many thanks

  50. Kevin Robinson says:

    My mother received NHS Continuing Healthcare last July. However I have just realised that we are also receiving Attendance Allowance. I think she should not any longer receive that?

    I am also assuming that NHS Continuing Healthcare should not affect her state pension. Is this correct?

  51. Susan Bradshaw says:

    Thank you, I will follow your advice and contact our local CCG, I did speak to PALS yesterday but they were not very interested or helpful, and I also spoke to mum’s GP, who agreed with me entirely but could not help me with taking things further, he just said that the NHS is bursting at the seams, I am sure she should have been entitled to be helped with her condition on the NHS, I will let you know what happens, thanks for getting back to me, will be buying your book,
    Thanks again , kindest regards,

    • Rita Brookes says:

      Susan Go on YouTube and search for NHS Continuing Healthcare (CHC) funding Professor Clements, he explains the case law behind CHC funding – I think you will be surprised. Also CHC funding Perkins.
      They are eye openers

      • Susan Bradshaw says:

        What I really need to know is why my mum had to pay for her surgery in the first place. The ongoing care is not a issue, as she now lives with me and I take care of all the ongoing after care. But I am cross that she had to pay for her surgery at all. To expect someone to wait two and a half years with a hernia the size of a coconut and a stoma bag that won’t work because of the hernia is unacceptable. We are not a third world country. My mum would have been into her eighties before they could do the operation, and I very much doubt they would have gone ahead by then. She has worked full time all her life and paid fully into the system. I am pretty disgusted , any advice welcome. Thanks in advance Susan

  52. Cath Myall says:

    Hello I have requested an NHS Continuing Healthcare (CHC) Checklist for my father-in-law (who is currently in hospital following a hip operation. I asked fit speak to the the discharge coordinator but informed she is on maternity and there is no cover. I rang the CHC team who said they would sort it and anyone on the ward can do it. However you say that anyone can do it as long as they are “TRAINED”. See below
    “This stage should be relatively straight forward and quick. It should not be a long drawn out assessment, and it can be completed by any health or social care professional who has been trained in it.”
    So my question is what training should I expect them to have???…I am fully prepared for a battle but and have a reasonable understanding of the system but not clear what constitutes “TRAINED”

    Many thank in anticipation

    Cath Myall
    PS i bought your book , it’s great and many thanks for the enlightening information!!

  53. Susan Bradshaw says:

    My mum has just had to pay privately to have a reversal from a bowel cancer colostomy operation and a hernia repaired which was behind the stoma, as there is a two and a half year waiting list here to get that operation done. She is 78 years old and could not wait another 2 1/2 years for this surgery as her hernia was the size of a coconut and was pushing her stoma bag off on a daily basis – so she could not leave the house. Can she claim her costs back from the surgery?

    • Angela Sherman says:

      Susan – if your mother needs ongoing care, then she should definitely be assessed for NHS Continuing Healthcare funding. You may also be able to claim back some care costs retrospectively. Regarding the cost of the actual operation, though, this may be a different scenario, and I would take that up in the first instance with your local CCG.


Trackbacks & Pingbacks

Leave a Reply

Want to join the discussion?
Feel free to contribute!

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.

Care To Be Different, The Copper Room, Deva City Office Park, Trinity Way, Salford, England, M3 7BG.

Care To Be Different is a trading name of Continuing Care Solutions Ltd, Registered no. 09939723.

All content on the Care To Be Different website is copyright Continuing Care Solutions Ltd.