Many people receiving NHS Continuing Healthcare funding for care find that their funding is taken away after a review.
If this has happened to you, you’ve probably been told to start paying care fees and that you can launch an appeal in the meantime. But should you pay care fees if Continuing Healthcare is removed? Continuing Care assessors seem to be targeting people who have previously been awarded full Continuing Care funding – and systematically taking the funding away. This is happening to people whose care needs have actually increased and whose health is deteriorating, and to people who need round-the-clock nursing care at the end of their lives. There can be only one motive: assessors wanting to protect budgets. And yet the National Framework – the very guidelines assessors are supposed to follow – states in black and white that budgetary considerations should never play a part in any Continuing Healthcare funding decision.
Should you pay care fees if Continuing Healthcare is removed?
If you’ve had funding withdrawn, and yet you know that health needs have increased and/or the assessment/review process was flawed and mistakes have been made, you can appeal. The NHS and local authority will say that you have to start paying care fees, and they will argue that it is only when there is a dispute between the NHS and the local authority themselves that the NHS has to continue to pay in the interim. This is outlined in the revised 2012 version of the National Framework. However, this gives the NHS free rein to simply remove all funding, regardless of need, and make people start paying for care – while also forcing them to fight to get the funding back.
Healthcare and nursing care – free at the point of need
This approach would suggest that NHS assessors can act with impunity throughout, falsely declare someone ineligible for NHS funding, force them to pay, force the family to enter an exhausting appeal process – all in order to wash their hands of the person’s care provision. What the NHS wants you to overlook in all of this is that healthcare and nursing care are free of charge in the UK (in law). It is only if it is clearly and reliably shown that a person is not entitled to NHS care (no matter what their age or circumstances) that NHS care should be refused. If you genuinely believe Continuing Care funding has been incorrectly withdrawn, then there are likely to have been flaws in the review process, and the eligibility criteria are likely to have been incorrectly applied. In such a situation, the NHS will have falsely declared that you are not entitled to NHS care.
How to argue against paying care fees
It’s worth using the following arguments when you’re asked to start paying for care:
- If the care provider has previously been paid by the NHS (through Continuing Healthcare) and then suddenly receives no further payments (and yet no safe decision about who’s responsible for funding has been made), the NHS is effectively breaking its agreement with the care provider. It is then, arguably, for the care provider to chase payment. Bear in mind that any dispute over care fees can potentially damage the relationship you have with you care provider, so keep this in mind throughout.
- State that you would have had no problem paying for care if it had been properly shown that it is your responsibility. The mistakes and flaws are not your fault.
- State that the NHS has stopped paying, and yet has done so with without regard to the relevant Dept. of Health guidelines. You should therefore not be forced to pay for someone else’s errors and maladministration.
- Suggest that the care provider forwards their invoices either to the local authority or to the NHS; if the assessment/review process had been conducted properly, this whole situation would not have arisen in the first place.
The NHS, the local authority and the care provider will of course fight back if you refuse to pay – and it’s understandable that a care provider wants to be paid for its services. However, the more you object, the more notice the health and social care authorities will take of your situation, and there’s a chance they may start to do things properly.
Remember also that if the NHS withdraws funding, it is by default passing responsibility for care to the local authority (LA). However, the local authority should scrutinise that decision – to make sure the LA is not being put in an illegal position. The LA can only accept responsibility for social care that is within their legal remit. It doesn’t matter whether a case is retrospective or current – that legal divide remains the same.
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Our family needs help. My father is in a home and his funding will stop by the end of next month. My mother is distraught as when he was in hospital his old nursing home wouldn’t accept him back. The doctors gave him 6 months at the most so it was decided that the health funding would pay the top up for the home he is in now which he was fast tracked to but they are now saying if we can’t afford to pay the outstanding amount that he will have to go elsewhere what can we do please help
Hi Christine – Do get in touch and we will see what we can do to assist you. enquiries@caretobedifferent.co.uk Kind regards
My mother was referred from hospital to a care home as it was recommended that she needed 24-hour care for her needs to be safely met. She was assessed in the hospital after staying for 18 days and received NHS CHC for 4 weeks initially. We had no doubt that she would continue getting this, but when she had a full Assessment in the home, was assessed by a nurse unknown to her along with an unnamed social worker who hadn`t been involved in her care and who marked my mother down low on psychological needs – the very needs which had got her specifically referred to a choice of that home or another in New Malden due to `behaviour problems`. 6 days after her Assessment on 8 January 2019, I had a call from a social worker telling me the result verbally and she proceeded to ask me many questions about if my mother had savings above the threshhold of 23,250, property etc. She already knew my mother had savings above the LA threshhold and wanted to know specifics which I didn`t answer. She also wanted to know exactly who owns the property and was already talking about my mother becoming a self-funder. She said she would send a Financial Assessment form and wanted a declaration that my mother had funds to pay for her care. I want to contest the Assessment result, and still after 27 days have not received the written report to show exactly how the decisions were arrived at – the report is supposed to be on its`way – my question is Social Services are now saying I should urgently get in touch with the home to see how much the payment should be before they send the invoice for the amount payable from the point of the Assessment date (8.1.19) My mother`s needs are not suddenly better and she is screaming and shouting at all times of the day and on the two occasions social services have turned up, she appear to be calmer (although distressed) – as they always turn up when she has had lunch and wheeled into the lounge to watch tv. My mother has wanted to commit suicide and said on many occasions that she would rather be dead than be there. After 6 weeks of not being psychiatrically assessed and reviewed for her new dementia medication ( which is supposed to help with psychosis; hallucinating, paranoia, delusions )- social services took this seriously and arranged for her to be seen by the local mental health team – a psychiatrist came within two days and all he did was increase her dementia medication dose. Noone wants to give her a sleeping pill (she doesn`t sleep at night hardly) or a sedative as her heart rate has dropped more and she was taken off medication for high blood pressure. The care home was asked how she was and social services were told she was now calmer within a 5 day period – as if this is an improvment and the end of my mother`s problems. My phone calls with her suggest the contrary: calm at first and starts getting agitated, distressed, paranoid, accusations etc. nothing has changed. My husband and I by are not in the uk but live in Germany and my mother was asked where she would like to be by social services : she has said Germany. We are concerned about agreeing to this again as we had looked after her for 15 weeks (prior to her going into hospital in England) due to all her complex health conditions: high risk of falls, cognition & memory decline, psychological, her risk of UTI`s/fecal impaction/urine retention, Acute Kidney Injury, skin breakdown, behaviour problems (screaming and shouting – sometimes uncontrollably – difficult to manage) – she had been manic here at nighttime – wanting to race down the stairs (when she was mobile) at all times of the night behaving like she had bi-polar along with schizophrenia symptoms (according the psychiatrist) – she had not been dealt with in the home in the best way – so I made an official complaint in writing (two serious falls involving her head and one involving three bloody areas on her nose), at least one more UTI, chest infection – all within 5 weeks. As she is under a different authority, she has a new GP and no connection to the hospital who dealt with her original stay in hospital and who completed her NHS Continuing care checklist for mum to get 4 weeks at the home. I want to contest this and am worried about my mother`s care and if I should pay the weekly bill to the home, even though I want to contest the result (NHS CHC funding being taken away) and social services are putting pressure on me to pay the home what is remaining. What should I do? Any help and advice gratefully received!
Hi Eve – So sorry to hear about your predicament. I am sure that we can help you with this. Why not get in touch with us via enquiries@caretobedifferent.co.uk and we can chat through your options. Kind regards
I am appalled at the way we have been treated by NHS Continuing Healthcare (CHC). My son aged 18 had an ABI which has left him severely cognitivly impaired and which aggressive behaviours. We had a review about 6 weeks ago and just been informed after going to panel that after 10 years in which time his behaviours have deteriorated since the first award he has lost his CHC. His fees are over £4000 a week he has 1:2 care during the day time and has no safety awareness His funding will now cease in 3 weeks time. Dont even know if thats legal without something else being in place. Has anyone else any advice?
What a nightmare situation this is. Have only experience with this type of funding(CCare) as have attended reviews with a friend to support her in the care of her husband. How can assessor get accurate information from a patient who cannot speak and has limited understanding of what he’s being asked. The assesses insist that he does so but I am not convinced that thumbs up or down is an indication of understanding. As a country we should feel shame that we are treating our citizens in this way. Many have them have worked hard all their lives and paid their dues.
I have recently been informed that my 90 year old auntie is having her Continuing Healthcare withdrawn. She is in the nursing unit of a local Care Home. My problem is that as her niece with no Power of Attorney (she has no children and is a widow) I cannot obtain the Decision Support Tool to appeal against this decision and she is too confused to do it herself. The Home don’t want to move her to the Residential Unit, she’s been in her room for 3 years and is quite happy, has about 5% kidney function with diabetes and so realistically is terminally ill. She only has a small amount of money (under £15000) which I have no access to anyway. I’m extremely worried about the detrimental effect this will have on her health and well being.
Well we had the resolution meeting yesterday – the social services representative was late turning up 10 mins before we concluded. I challenged the fact that a well managed need is still a need and the two domains we disagreed with which was ASC and behavaral, They’ve moved ASC from high to low because of medication change which reduces ASC / I challenged that this is because it is being managed, and they moved behavior from high to low because my mothers ” mood ” has improved. I challenged that this was very subjective and we did not agree that even with the change that CHC be removed. They said it wasn’t the DST in paticular that changed their decision but the four key principles. I argued that the framework didn’t say that and that usually a severe rating coupled with majority of highs should be considered carefully – they disagreed and said that the MDT which doesn’t include us agreed that the decision was correct! The care home later confirmed to me that no MDT took place and the family’s points were defiantly not discussed. The nurse practitioner who completed the DST actually lied about what was said and when challenged said we must have mis understood !!
We now have to wait for the decision on the resolution meeting, but it seems quite Clear to me that I understand the framework better than they do! They told me it’s a matter of interpretation !!!
What a shambles, Gary. So frustrating – and absolutely unacceptable that the ‘professionals’ behave in that way.
Meeting is next week- I will post the outcome and process post meeting
I hope very much you have a successful appeal. Goodness knows it’s plain bonkers. This time we have remaining with our parents is being spoilt by these bigwigs behind their paperwork and computers.
Sending much love x
We’ve just been given a date for a “resolution” meeting
Sally, exactly – forms,meetings and ultimately money! It takes away your compassion for your loved one as you spend more time fighting for what’s right than you do spending precious moments with them – I’m going all the way with my mum’s case and will not lay down to their bullying condescending tactics.
My Mum has been fully funded in her care for the five years she’s been in the home. I was under the belief this was because of her condition (Frontal Lobe Dementia aka Picks Disease). I have attended each yearly review of the continuing healthcare but I never considered it could be withdrawn. Today, after the latest review, it was withdrawn. In the past 6 months certainly, my Mums condition has deteriorated and she is now in need of constant care, in having no mobility now, being doubly incontinent now and having very little communication now. I fully understand that her care needs have changed in that she no longer displays aggressive behaviour but now at the later stages of this cruel twisted disease, needing everything doing for her, we don’t fully understand why she’s not classed as being eligible. Surely she needs more care now? And so we are plummeted into the rotten twisted world of form filling, and talking money, and it’s all made all the more difficult because my Dad also now has Dementia. As though we need anything else like this stress to deal with ?
Sally – we’re hearing increasing accounts of funding being withdrawn, and withdrawn without proper examination of ongoing care needs. It’s so distressing for families, especially if it’s clear that the person needing care still meets the criteria. We often hear reports of assessors stating that people who are less mobile have fewer care needs. This is flawed and should never be a blanket approach to funding decisions. For example, the greater a person’s immobility, the greater the risk of pressure sores and other serious problems. Focus on all the risks your mum has in her current situation – and make sure that the assessors have looked at all relevant risk assessments: http://caretobedifferent.co.uk/supplying-evidence-for-continuing-healthcare-assessments/
Hi,
My mother went into care with accute vascular Alzheimer’s in 2012. Because of her capital she was self funding until mid 2013. Once her threshold of £23,250 was met we notified the local authority who completed an asessement taking into consideration her pension etc. We chased for a contribution cost until 2015 and eventually gave up. In the January of 2016 I was presented with an invoice for outstanding care fees of £46,000.
Prior to this in the December my mother was awarded Continuing Healthcare (CHC) funding. We succesfully challenged the care fees of £46k and agreed to £22.5k which all but wiped out my mothers funds, however knowing that she was now funded with CHC funding her pension would once again top up her account. Less than 2 weeks after paying the £22.5k we were told that CHC funding would stop within 28 days! We have appealed this as we dont belive that the assessment tool was carried out fairly. My mother’s state was based on how she is with the care in place, whereas the framework suggests that this should be completed as if there was no care in place; secondly the NHS representative was not interested in our comments and although she listened this was not reflected in the report. Only two out of the 11 domains were lowered and my mother still scored x1 severe, x3 high and x4 moderate; again our appeal is based on the assessment tool guidelines that 2 severe or 1 severe coupled with high and moderates would usually qulaify for CHC funding. – Has anyone else been through this same scenario?
Many thanks Gary
Gary – you said “because of her [your mother’s] capital she was self funding…’ Remember that her money/capital has nothing to do with whether she’s self funding; it’s to do with her care needs only. Many families have experienced the same kind of maladministration as you, Gary. Be sure to challenge everything you disagree with – both in terms of how the process has been conducted and also how the eligibility criteria have been applied. (Bear in mind that the scoring criteria state that 1 Severe score + other Highs and Moderates MAY indicate eligibility.)
Gary- How did you go about successfully challenging care home fees? Similar with my Mum. CHC removed ( waiting for appeal meeting) home wanted over 40k but only figure ever had in writing was what NHS gave them. So I tried just paying this rate but they want the rest from us.
Having read the all the above me and my brother are in the same position and have actually had the threat to serve notice on our mum by the care home , social services have only just sent us the financial assessment forms although they state they sent them early December ( social services LIE ) DO NOT TRUST THEM , on top of this providing the person in care authorises expenditure of thier money they can give away as much as they want as it is thiers however if the person in care dies within 7 years of giving assests or money to others it would be subject to inheritance tax if over £320,000 i believe this is correct could someone clarify , as this would then if you have over the Social services allowed amount force them to pay anyhow
Be careful of the Deliberate Deprivation rules. If a person already needs care, or it’s clear they will do, giving away money could breach these rules, because the local authority may deem it a deliberate attempt to avoid paying care fees.
My father’s CHC funding was withdrawn even though his dementia and Parkinson’s is deteriorating rapidly. He had to move homes as we were unable to afford the extra £400 (almost) a week in his home. He has moved to somewhere that is dreadful. I have found out that the home has failed it’s CQC inspection on three areas and am now trying to have him moved back to the original home. Anyone know of a good solicitor/law firm that might be able to help. I have Social Services involved, have also complained to the CQC, who send me back to each other. I have read every document policy going – can argue the case backwards but nothing is being done. Does anyone have any suggestions?
Sounds like the review that removed the funding was flawed, Ruth, if your father’s care needs are increasing. You could also raise a serious issue with the Head of Safeguarding at the local authority, given the failing in care provision. Also, you may not need to pay top up fees: http://caretobedifferent.co.uk/care-home-top-up-fees/
I have today heard via my mother’s nursing home that Continuing Care is being withdrawn. She was allocated funding on the Fast Track basis but has survived. It is now 14 months since she first entered the nursing home. She is stronger but her health is compromised by various illnesses. These have not been noted on section 12 of the form. So at this point, and without having received formal notification myself, I am assuming that on this point alone the review is flawed. In fact it took three attempts to do the review because of my mother’s unpredictable health.
Anyway, as I am new to the Appeals Process I am open to any suggestions from anyone before I get bogged down by events.
Thank you for reading this.
J Lloyd
Hi Dorothy,
I’m sorry to hear your situation. We challenged the local CHC due to their inconsistencies when undertaking assessment. It was also clear that the nurse who carried out the assessments was only interested in moving mum from NHS funding to local authority and vice verse. We went to appeal and lost – I sent all my information to NHS England who decided there was a case to answer – this took 18 months and they ruled she should be fully funded nursing care.
How did this come about. She first went into care for respite, however her capacity to do things quickly deteriorated and very quickly dimentia took over. At this point she was residential care and because of her house and pension she was fully funding. We were told the house should be sold with evidence of the sale fee bring placed into her account. This was all whilst bee were awaiting a funding and contribution assessment. She continued for the next 3 years contributing to the fees through her pension, and despite chasing social services consistently for the correct contribution amount it never came through – 5 years on they landed me a bill for over £40k of unpaid fees, I appealed this however this is with the local council finance department, again despite sending them a solicitors letter they didn’t respond – I eventually agreed to meet them on the condition I didn’t take legal representation with me. Long story short I evidenced all my communication about funding and explained how could I pay what I didn’t know we owed, and is it acceptable that due to their appalling admin that we should now be penalized. I acknowledged that we had under paid but not our fault – I offered to pay 50% of the so called debt immediately on the condition this matter be closed. The offer was accepted and of course wiped out my mum’s money – therefore now under the threshold and only having to contribute her pension or a %.
Next come the first part above and a small consolation that we got some care fees back from NHS England With confirmation that she indeed qualifies for nursing care which of cause is funded.
Hope this helps and don’t hesitate to ask any questions about the process, I’ve been through every part of it !
Thanks for your comment, Chris. It seems that the risks to the patient often come last in the pecking order. I am hearing increasing account of families (acting correctly under a power of attorney) being threatened with Court of Protection intervention when the family stands up for their relative in funding issues. It’s all quite wrong, of course, and an attempt to intimidate the family, I suspect. The person with the power of attorney has a duty to stand up for their relative.
Hold out for as along as possible, arguing the points above, but keep in mind also that care homes also need to be paid by someone. It’s a very difficult balance at times – and one that is really dreadful for families – because of course you don’t want to jeopardise the care your mother is receiving or risk her having to move.
Hi Angela, I understand the points. However, as the arguments is generally about the cost of accommodation, surely the patient has the same rights as a tenant?
I have long wondered why there are no tenancy agreements between the home and patients.
I would imagine that any eviction would cause chaos and cost to both the NHS and the Council bearing in mind the risks to the patient.
Great site by the way.
Thanks for your comment Michael. If you win your appeal, then the NHS should reimburse any care fees paid in the interim, regardless of what the care home are saying about refunds. I agree with your point that, to act in your mother’s best interests as her Deputy, you would not want to start paying the fees. NHS teams sometimes try to argue that the opposite is true, and some threaten to go to the Office of the Public Guardian to dispute the Deputyship or power of attorney. This is, in my view, entirely flawed – and of course motivated entirely by budgets, not by the welfare of the person needing care. If things get to that point, it may be worth seeking legal advice.
To add to my brother’s comments above, I have just read the revised framework 2012 and this issue of who pays during an appeal, when the CHC has been removed, isn’t mentioned as a scenario and is a very grey area. Our mother has had CHC since 2009 and this is the third time the NHS have tried to take it away. We have successfully challenged the two previous reviews as we were able to prove quickly and unquestionably that the evidence used was flawed and inaccurate. Our mother’s needs are now more complex than they have ever been, due to a multitude of different health problems, but they are arguing that she is now more stable and predictable to care for on a day to day basis.
I am expecting a longer battle this time around but already have enough evidence to prove that the recent assessment process was again flawed and that a more thorough assessment is required.
Can we be forced to pay the huge care home fees in the meantime?
As far as I can see, the 2012 framework is pretty clear. Appendix F clause 3 states: “If, at the time of referral for an NHS continuing healthcare assessment, the individual is already receiving an ongoing care package funded by the Board or a CCG, or an LA, or both, those arrangements should continue until the Board or CCG makes its decision on eligibility for NHS continuing healthcare”
I think that’s pretty unambiguous – if your relative was already in receipt of CHC, and then the CCG turns it down, if you continue to the NHS England IRP (Board, in the wording of the document) then the funding should remain in place.
Has anyone pursued this further? Despise the above clause being pretty clear, I reckon, my local CCG says it will still withdraw current funding during the appeal process because they’ve received advice from NHS England to do so in such cases. Apparently, NHS England has sought legal advice to back this up.
Looks like it’s an area that might need a test case in court to clear it up.
Hi both, did either of you know that it is in fact illegal to even temporarily obtain money that belongs to another whilst knowing that it might not be owed to you or even recklessness as to your right to it?
It is therefore crazy that Councils have established refund protocols in anticipation of being proven that they are wrong to have invoiced and then retained the money in the first instance.
I am refusing payment on the grounds that a third party order against the NHS will require them to attend the hearings and prove that they have actually assessed properly. It is easier than me starting an actions in my own right and on behalf of my Mother and My Father In Law.
The Council would also have to show why the care for both of them was previously accepted by them as beyond their remit to provide and yet with increased recorded needs, it is now within their remit simply because of the cosy relationship that is being enforced by the same Secretary of State and department that controls both the NHS and Social Care.
I would also counter sue for the expense of conducting the entire process…. After all, they get paid to go to work, why shouldn’t I. Damages might also be due for distress to any member of your family that can show such exists as a result of the foolishness.
During the case it should be permissible to question any employee as to any lies told; that relate to fact or law and also to establish liability against their employers, the CEO’s of the organisations, on vicarious grounds.
Just so that it is understood, unless you are over the savings and asset limits, you should not be paying care homes directly in any case. You usually reimburse the Council according to your means and they also make payments to top up your contributions and then they pay the home.
If you do need to pay the home directly then think seriously about contesting any action they may take if your evidence indicates that another party should be paying them.
Also. it is worth discovering just what the NHS and the Council usually pay the home. My Father in Law= £940.00: NHS= £650.00: Council= £421.00 + £108.00 NHS FNC contribution. No wonder I have noticed a recent distinct lack in two homes, of their representatives at assessments doing anything but agree with the NHS assessor….. It gets them at the Home, more money.
The patient even if part funded by the Council still needs a family member to top it up. That them places me and my family at risk of loss as well as the patient, by false means and that is fraud.
Note: the current Funded Nursing Care payment in England is £110.89 (2014/15). Also, see this post about top-ups: http://caretobedifferent.co.uk/care-home-top-up-fees/
My mother’s fully funded continuing care has been withdrawn and we have been asked to sign up to an agreement by the Care Home to immediately start paying over £900 per week for residency , pending the appeal against the NHS ‘s decision. The Care Home state that ‘privately paid fees will not be reimbursed’.
If I agree to sign up to this and we win the appeal any fees paid will be lost. As my mother’s ‘ Deputy ‘ I cannot possibly sign this agreement before Knowing the result of the Appeal .