Richard wrote to us to help spread the word about Continuing Care, and to encourage other families to take up the challenge to get proper assessments done.
He told us about his battle to get his mother properly assessed.
His story highlights how important it is to be well-informed about Continuing Care, to challenge any statement that you ‘won’t qualify’ – and to challenge any negative funding decisions.
He writes…
“My mother went into hospital with septic arthritis from a care home. Prior to this she was diagnosed with Vascular Dementia last October after being admitted into hospital with UTI and severe chest infection. We were not informed of this, and it was by chance that me being nosy and wanting to know things, that I was reading my mum’s medical file that had been carelessly (thankfully) left at my mum’s bedside.
“Earlier this year, mum got steadily worse with the dementia and recurrent UTI’s. As stated above, she went into hospital with this septic arthritis, she was in the hospital for eight weeks, and every week we were given a threatening letter by the Ward Manager and Social Services. They wanted rid of mum. Anyway, we were informed that mum would be assessed for Continuing Care (CHC) but that it was unlikely that she would qualify as 99% of those assessed do not.
“The assessment went ahead, but documents were removed from the Ward by the CHC Team without informing anybody. When they were challenged by me (legal training coming into play) and threatened with legal action, the documents suddenly appeared. However, mum’s scoring was as far as I am concerned deliberately set low so that she would not get the CHC funding that we considered she was entitled to. Needless to say, she did not “meet the criteria”.
“I challenged the decision, pointing out that the National Guidelines had not been followed, and that the Coughlan case and others had not been followed. One of the CHC Team did not even know what the Coughlan case was all about until I pointed out what the Judge actually said and what the National Guidelines said, which implemented some of the issues raised in the Coughlan case.
“Lo and behold, the Team Leader for CHC made an official complaint against me saying that I was rude, offensive and that my father had assaulted her – an extremely serious allegation to make against my father. I challenged this person as well as her boss right up the tree of CHC and said fine, take it to court. They backed off very rapidly, now my mum is to be reassessed and the CHC Lead is going to chair the panel meeting.
“I still believe that my mum like thousands of others has been wrongly denied Continuing Healthcare funding. I also firmly believe that, as they know that I will not back down and that I will fight them all the way to the High Court if necessary, we will get the full Continuing Healthcare funding for my mum, and rightly so.
“My message to all those family members whose loved ones have been denied Continuing Healthcare is to fight them all the way, make your views known to those concerned, and get armed with all the relevant documentation and read and digest what the Guidelines say and what the law says. All the information is available on the internet.”
If you’ve had similar experiences – or you’ve had a good result with Continuing Healthcare – add your comment below.
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A week ago I had to sign some paperwork on behalf of my mother who is blind to say that she had consented into going in to a nursing home, i was also there when she agreed. I spoke to the ward manager to say that before she is discharged the Continuing Health Care Check list needed to be done. The day after she was moved to another ward.
We also mentioned that the CHCC needed to be done, even the nursing home manager told them after assessing mum a day ago.
I have had call tonight to say mum is being discharged tomorrow to go to the nursing home. I mentioned that the CHCC needed to be done and was told that this can be done when in the nursing home and she may not get it anyway.
I did say that was irrelevant as the checklist obviously hadn’t been done.
The nurse in charge said this can be done at the nursing home, which after reading is not true.
Mum 3 weeks ago was in her own home able to certain things independently and after having urosepsis and another infection while in hospital has deteriorated, she has since been catheterised, not able to walk or feed herself.
Due to things moving so fast, Im not sure where to go from here.
Hi Nicky – Please call us and we will arrange for you to speak to one of our specialist CHC advisors – 0161 979 0430 Kind regards
This is 2019 and we are battle with NHS & Social services – my mother is 89 yrs old and been in 5 hospitals in the last 18 months. She is currently in hospital now she had been there 5 months from falls & Parkinson & diabetes & dementia she has no property and in local authority care at home. Companies that authorised by social services we have brought 4 complaints in different companies regarding mum’s safeguarding & negligence discharge team at this hospital have threatened to change mum’s locks in flat to send her home with the care that’s been in adequate assessment in the hospital checklists have been without no family present I have LPA on my mother they say she has capacity to make decisions which we would dispute and they will not recognise my LPA my mum has been intimidated & harassed very upset & confused as we want mum in a nursing home any advice would be appreciated
My Mother has had vascular dementia for 5years ..the last 18months she has been in a nursing home ..8 weeks ago she had another massive stroke and was taken to hospital with our insistence as home wasn’t sure ? Paramedics were disgusted she had been left so long . She was in hospital for 2weeks . She was fully funding her care at £1250per week with money from the sale of her small 2 bed excouncil house . She has so far paid over £85000 in fees . The hospital wanted to discharge her back to the home on 12 week fast track palliative care . I have now ,after 8weeks recieved a call to say she is being assessed next week to see if her care is adequate?? I have heard that funding can be withdrawn at this stage . After going through the CHC meetings in the past I know how they work in their favour not the patient? Mum is double incotenent .cant speak, feed herself , she is on thickend drink and puree food she cant
hydrate, medicate, sit up ,clean herself . She doesnt know who we are . She is bed bound and can get agitated .she pulled her cathater out
She has morphine when required and calming injections when needed . She just lays in bed chewing her blanket or is asleep . Iknow from going to a meeting to discus why she didn’t get CHC before the very angry man told us she would never get it as not even if someone is dying it doesn’t matter as her care can be managed . I feel it was just one big con to get mum out of hospital to stop the bed blocking as there is a few people in the home that the same thing has happened too and weeks later funding has stopped even though their reletives have not improved and probably won’t.
Mum and dad payed their dues all their lives ..Dad died just before his state pension kicked in so didnt claim anything . Mum paid tax on his very small private pension which she only got a percentage off so now they are taking her home . The care home has now put their price up to £1420per week .how it can jump by that much money per week is beyond us . It’s not stately home its just a normal nursing home but the owner says he cannot run it on the money CHC pay so is not on our side . Not looking forward to the meeting next week which is adding to
all the upset with mum’s condition. .
Hi Teresa – many thanks for your message. What an ordeal. Do get in touch if you would like some support or advice through the review process – they may well seek to withdraw funding at this stage. Feel free to call us on 0161 979 0430
Brilliant and helpful site. Our own experiences are not good but largely due to the CCG and the way they “interpret” the Framework. My father in law is currently awaiting discharge home. Likely diagnosis is mesothelioma but we await a biopsy confirmation. He is immobile and on morphine. He has had a chest drain fitted which triggers an A under breathing domain and thus qualifies for full DST assessment when he is back home. Our understanding and the way the Framework is written is that the care package costs in their entirety will be met by the CCG until the full DST outcome is known. I paste the relevant section below:-
“Where the [NHS Continuing Healthcare] Checklist has been used as part of the process of discharge from an acute hospital, and has indicated a need for full assessment of eligibility (or where a Checklist is not used, a full assessment of eligibility would otherwise take place), a decision may be made at this stage first to provide other services and then to carry out a full assessment of eligibility at a later stage. This should be recorded. The relevant CCG should ensure that full assessment of eligibility is carried out once it is possible to make a reasonable judgement about the individual’s ongoing needs. This full consideration should be completed in the most appropriate setting – whether another NHS institution, the individual’s home or some other care setting. In the interim, the relevant CCG retains responsibility for funding appropriate care.”
Straightforward? No. The CCG interprets this, as apparently they can do where there may be so called ambiguity, that they shall provide the appropriate care ie health needs only and not any social care needs. So during this interim period following discharge the social care costs, two staff four times/visits a day, has to be paid for. Of course if full funding is agreed they will reimburse any costs.
Given the CG has said they will bear the cost of any services they would have or have being providing in hospital we are minded to charge back the cost of catheter management, continence management and medications management (or hope the social worker will charge back the cost of providing these services and reduce the bill to us.) Thoughts would be welcome.
Hi I have the same issue with my Father Hospital Discharge Team are useless and Social Services are also useless. MDT Meeting Best Interest father needs 24 hour care with up to 2 people. Options given to Family Either he goes in Nursing Home or He comes home 4 x double up care per day family get a rota together and you pick up the slack. My argument same as yours why the CCG is not picking up my Dads care in his home. We’re does it legally state that 4 x double up care at home is the Maximum you are entitled to by UK Law. No replies to my emails by anyone Hospital, Social Services and Useless Local MP. One discharge planner from the Hospital was on a BBC 2 program looking and sounding Good for the Camera the truth a Wolf in Sheeps Clothing.
My 83 year old mom is due to be discharged from hospital on 13th November 2017 following a severe stroke. It has left her with no mobility, no speech, no understanding, unable to read or write, a diet of mashed food & thickened fluids which has to be fed to her and doubly incontinent. She will be sent home with 5 types of medication which she is unable to take herself. As she requires 24 hour care I intend to move in with her and they are intending to set up QDS care calls to help me. They are providing a hospital bed, wheelchair & pressure relieving cushion, commode/shower chair and a standing aid as it takes two people to transfer her. Prior to her stroke she was a completely independent lady, never been in hospital and took no medication. The only thing I am having difficulty in getting them to do is an NHS Continuing Healthcare (CHC) Checklist/assessment. I am being told by nursing staff and discharge managers that there is no point as she will not meet the criteria. The reasons vary from “she is not end of life”, her illness is not critical enough”, “we only do CHC paperwork if being discharged to a nursing home”, “she doesn’t have medical needs”, “its only social care she needs” etc. all of which I know are not true having read the criteria for an assessment. I have told them that this is not my understanding of CHC and still want a Checklist done but to date my request has been ignored. I am now concerned with her discharge date approaching that they will just not do it and send her home. At the end of the day she may not get CHC but I am not going to be fobbed off without a battle. Where do I go from here if they continue to refuse? Any advice appreciated.
CHC Checklists: http://caretobedifferent.co.uk/nhs-continuing-healthcare-checklist-assessment/
My mum has been in hospital for 3 months now with vascular dementia, also she has had many falls, 8 of which were in hospital. My brother and I have P of A. We have asked for NHS Continuing Healthcare, she was ascessed for this, but we have been informed that a decision could not be agreed so they now want mum to go to a nursing home for 6-8 weeks while
they come to a decision. They tried to get us to pay half but have now relented saying NHS will pay half and Social Services half. We have received no copies of any tick lists or of any correspondence despite asking for them. Any ideas of how we can move forward?
With a view to the new proposal in the Conservative manifesto… If a person receives care at home as my husband does, they are saying that £100,000 will be protected from care costs. If lets say we have a home jointly owned, would that mean that if our home is worth £200,000 then £100,000 would be protected as my husbands share of the estate and £100,000 protected as my half of the estate? My concern is if one of us were to pass away, what position would that leave the surviving spouse. Will the surviving spouse be able to live out their remaining years in the family home whithout having to worry that the council are going to make large financial demands.
Sue – many thanks for your comment. In advance of the General Election, there are various proposals being put forward by all parties. However, until the actual outcome of the election is known, the actual full detail (and small print) of any potential changes to care funding are not completely clear. Once the election result is known, however, we’ll cover this in more detail. You’re correct, though, that the Conservatives, should they win, seem intent on making things worse for families.
Hi, At last thanks to this wonderful very informative website I have found answers to my father in laws ongoing health problem. He’s an 87 widower living in his own home , with what we think is early dementia or alzheimers, its never been diagnosed, he has severe walking difficulty and also been falling several times a week over the last few months, once breaking his wrist. We have had carers going in three times a day, but once they left at 9pm he was still vulnerable till the following morning. Two weeks ago at 7.30am we got a call from his lifeline saying that he had fallen again, we found him lying on the floor in a pool of urine as he had been there all night and not been able to get up. We could not lift him so an ambulance was called to take him to hospital and from that point he went rapidly down hill. He fell twice again and after a week he was discharged into temporary respite for two weeks which we would have to pay a top up. Once in the care home he fell again breaking his hip. He is now back in hospital but in a totally confused, hallucinatory and sometimes violent state, it was that bad we had to call in a psychiatrist and also now cannot walk at all without the aid of three nurses. The hospital have deemed him fit enough to be discharged, I don’t know how, and Social services have stepped in to find him somewhere to go. My wife has intervened saying this impossible as he needs a proper Continuing Healthcare assessment, the hospital agreed but they said it cannot be done there and he would have to be discharged into a proper facility first before the CHC can be done. I’m very suspicious of there intentions and are treading very carefully before we agree to this. Sorry for the long post but I’m so pleased this website is here for people to state their situations. Thanks
Thanks for your very kind words about the website, Phil. I’m glad it’s helpful.
Is it possible to start a petition on line , to get the the Houses of parliament to look into this abuse by the health system , surely if they are not sticking to the Laws , Regs and NHS Framework , laid down by courts, and not following the Nurses Code of Conduct they are all acting illegally . ?
Sue – this may help: https://www.parliament.uk/get-involved/sign-a-petition/
Hi Sue
Take a look at this…
https://petition.parliament.uk/petitions/191242
…which runs until 29/9/17
My mother fell and broke her hip in October 2015. I was also advised she had had a ‘cardiac event’ She was hospitalised. She was subsequently diagnosed with Alzheimer’s and mixed dementia. Some concerns were raised about my father’s capacity whilst he was observed at the hospital. A meeting was eventually arranged with a social worker appointed for my mother. My father insisted he wanted her home and he would pay. They initially said he had to have 4 visits from care workers per day. They expressed reservations to me as to whether he would co-operate. He did, but throughout I have repeatedly pointed out that I did not think he appreciated how much it was costing. My mother was discharged and on the first night he told me he was tidying up, saw a tube sticking out and thought it looked messy and cut it. I transpired it was the catheter tube and as luck would have it no damage was caused. He was then advised he had to have an overnight carer and two visits. I thought this was odd as I thought he may potentially have more difficulty during the day. All this for the sum of around £5000 per month. I was told by the social worker that the care agency would have reviews to see if the care was appropriate. Almost since inception there have been problems with payments as my father has not had a proper grasp on things. When I speak to him on the phone he still says he has more money coming in which I am sure is incorrect. Whenever he gets in trouble the care agency, a social worker (now appointed for him) plus her boss go to their home and always have trouble explaining to him. On one occasion the agency served notice on him as he owed £9000. When I tried to sort it out, another payment had become due and ‘we have found a couple of invoices from before Christmas) and within a week it had increased to £1300. I was told the care would stop if he didn’t pay. I am not sure how that would pan out as the care was imposed on him in the first place. That was eventually sorted out. In August I asked if any reviews had been carried out so one was arranged. Shortly after that I was contacted to be told he owed £16000 (they only ever contact me about money) I thought that been sorted. Just over a week ago they said he owed £11000 and yet again three of them went round there and he told them to stop the care and yet again they contacted me. I asked over a week ago for a statement of what he has been charged and what has been paid, but no information has been received as yet. I have chased it today. As I have said above they contact me when there is trouble over money. I have a POA for my father obtained before, but the bank account Is in joint names and my mother does not have capacity and the Office of Public Guardian say I cannot operate it. I hope this all makes sense. Do you think I should make a formal complaint to the Agency and if as I suspect I get nowhere who do I complain to next
Vivien – the first issue to address is NHS Continuing Healthcare. Your mother should have been assessed for this before she was discharged from hospital: http://caretobedifferent.co.uk/paying-for-care-between-hospital-discharge-and-funding-decision/. Secondly, if it’s not safe for your father to be looking after her, this may need to be raised as a matter of urgency with the health and social care authorities. I’m assuming your mother does not have the mental capacity to make a decision about where she wants to be. If the care agency is failing to manage its affairs properly, make a complaint not only to the agency but also to the local authority, especially if they recommended them, or put the agency in place.
My mother went into a care home a year ago after 2 months in hospital. A family meeting was called to assess where my mum should go from leaving hospital. It was agreed by all that she should go into a home. She requires nursing care which is paid by the NHS and care home fees are paid by my mums pension, my dads pension and local council. My sister was asked to pay top up fees and asked me to go half. I agreed to this at the time even though I was a full time mother without income except my husbands. The cost of raising 2 children and everyday living was putting a strain on our resources. My husband and I sought to get advice regarding this situation. It has emerged the whole process was not done correctly. I have since informed the council I can no longer make these payments. They have sent me 2 final notices threatening court action. Phones calls telling me I need to give them a name and address of another third party. I have been unwilling to do this as I don’t think it’s my responsibility to make someone pay. Does anyone have any advice please. Thank you
I’m sure many people reading this will empathise with your situation, Rachel. A few points: You mentioned that your mother receives NHS funding for her nursing care but not for the costs of accommodation. Has she actually been assessed for NHS Continuing Healthcare? If not, that needs to be done immediately. Regarding top ups, the following article will help. Be sure to click through to the Independent Age reports: http://caretobedifferent.co.uk/care-home-top-up-fees/ Although I don’t know your case, I wouldn’t be surprised if the threats to take you to court are hollow. And even if you did go that route, if there have been failing in the assessment process, you would probably win. You have the Care Act on your side, and if there has been no lawful appraisal of whether your mother’s care is beyond the local authority’s legal remit, then not only is the local authority acting illegally, but the NHS is attempting to extract personal assets from you fraudulently. This may help: http://caretobedifferent.co.uk/care-act-2014-helps-you-with-nhs-continuing-healthcare/ Be sure to read the comments from Bernie Crean underneath.
I have 2 dear friends and their Mother is 99yrs of age, she went in to hospital after a fall, had a UTI, she has been in since New Years Day. The Occupational Therapist had a hospital bed and a hoist delivered to her home and said she could be discharged with 4 lots of Carers a day and her only son to do the night care as he has always done. The Social Services state he is not qualified as she needs Nursing Care, the son, employed two trained Nurses to come and work for when his Mother was released and the Social Services said… not good enough, she needs 24 hour continuing care which is for free right? but no, they say they are going to force! the lady in to a Nursing Home against her wishes and the son has to have a debt attached to a business that his Mother has her name on but no interest in and never has. Yes, the Lady has Alzheimers but she is aware of what is happening and is petrified. The 2 friends argued about this and now, the SS are bringing in the Police and Security services to a meeting next week to decide how best to force a 99 year old bedridden lady in to a home against her will and prevent the son from trying to stop it, they did say they would do it by force if necessary. The Solicitor they have is trying to defend the debt issue but is unable to stop these barbaric SS from basically grabbing a granny, what can you suggest they do?
Toni – the mother should have been assessed for NHS Continuing Healthcare funding prior to being discharged from hospital. Also, no one should be asking about her money or telling her what she’ll have to pay until the NHS Continuing Healthcare assessment process has been carried out properly. This will help: http://caretobedifferent.co.uk/paying-for-care-between-hospital-discharge-and-funding-decision/ This is a fundamental principle of the Care Act. Tell Social Services that they are breaking the law if they fail to abide by their legal duty in this respect.
I wish all luck. This should not be a fight – it’s something that’s deserved. When will the government get on board this.
Some tips for those about to attend a CHC assessment.
1. Take somebody with you purely to take notes.( in particular to take note of names of all those present).
2. Don’t sign anything unless you are absolutely certain what it is you are signing.
3. If not already provided to you – insist on a copy of the “local protocol” as outlined in Appendix G of the National Framework.
4. Tell the assessors up-front that you understand that they are NOT allowed to ask any questions relating to finance or property.
5. Make sure that the “multi-disciplinary team” includes health professionals that have been directly involved in the patient’s care (NOT just the CHC assessors) and a comprehensive health needs assessment has been prepared before the CHC assessment meeting.
6. If the applicant for CHC is still in hospital, at all times avoid questions relating to where the patient will be cared for in future.
(N.B. It shouldn’t make any difference according to the National Framework, but it does affect the cost and can prejudice the outcome of the assessment or even the patients future care.)
7. Don’t be drawn into discussions about what care you provide as a friend/relative in particular medication
( we were outrageously referred to ‘Safeguarding Adults’ on spurious grounds of ‘self-medication’ because we had the audacity to make a complaint against the CHC team).
8. Make sure all the DST “Domains” are addressed and don’t be taken-in by any rubbish about “double-scoring”.
9. Don’t underestimate the the levels to which some assessors will descend – many thousands of patients with “Primary Health” needs have been defrauded of hundreds of thousands of pounds already.
10. Make sure that the assessors know that you are aware of their legal obligations as regards to the Standing Rules & Regulations (ideally give them a copy)
Thanks Martin.
Thanks so much for your feedback Richard. That’s kind of you. So glad the book has been helpful. Wishing you well with the outcome of the assessment – and if you need further help, do let us know.
I have just joined battle with NHS and Social Services to obtain Continuing Care for my mother. The ‘How to get the NHS to pay for Care’ book has been brilliant support in preparing the case. Mother has now had the Checklist Assessment, and the Full Assessment, and I await the recommendations with baited breath. This may be a long hard road, but this is a case which I am determined to win. Wish me luck!, and good luck with your cases when you start to fight them.