We often hear from families with an older relative in hospital. Very often that relative is being discharged from hospital into full time care – but no one has explained the process fore deciding who pays for that ongoing care?
A family will often be told that their relative no longer requires NHS care, because their relative’s care needs are social care needs. They are told their relative must vacate the hospital bed and pay for ongoing care themselves.
The family will also almost certainly be asked if their relative owns their own home.
This causes confusion and stress for many families – especially when it is obvious that their relative’s care needs are no different to when they were admitted – or have actually increased.
If a person is told they have only social care needs, they effectively become the responsibility of the local authority. When this happens they will be means tested.
However, a local authority should take responsibility only once it is clear who is actually responsible for paying for ongoing care. This is not based on a person’s money! Nor is it based on whether the person has a house.
If a person with health needs requires ongoing full time care, the only way to know who should pay is for an NHS Continuing Healthcare assessment process to be completed. This should happen before the person is charged a penny for their ongoing care.
If the discharge team (or anyone else for that matter) misleads a person into paying for care before an NHS Continuing Healthcare assessment has been done, they will be in breach of the court ruling in the landmark Coughlan case. They will also be breaching the NHS funding guidelines – the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care.
If a local authority takes responsibility for care before this NHS Continuing Healthcare assessment process has been properly carried out, it is at risk of acting illegally. Read more about the legal limit for local authority care.
The Coughlan case was vital in reinforcing this local authority legal limit.
If a person is discharged from hospital into full time while this assessment process is going on, the NHS is responsible for funding all care in the interim:
“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.”
(National Framework, page 25, paragraph 74)
Read more about the NHS Continuing Healthcare assessment process.
So, in a nutshell, when a person is being discharged from hospital into full time care, the local authority should only means test if:
- the NHS Continuing Healthcare assessment process has been properly carried out
- AND it has been properly shown that a person does not qualify for Continuing Healthcare
Otherwise the NHS should pay.
Read more about care fees and care funding.
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Hi , feeling angry and frustrated and needing help I have been online the past few days looking for any info to help. My 94 yr old mother was placed in residential care home 4 yrs ago . This came about as she was falling ( no injuries) she was being difficult in her home refusing meds from care workers and refusing to wash etc which led to sores and her needing to go to hospital for treatment. At a meeting with her hospital doctor , nurse and ward psychiatrist they said with scans and acessments there was no Dementia but acessed as having Borderline Personality Disorder. She has been very happy and content in her residential home, the older workers know how to work with julie and she loves her wee room and TV etc she can independently toilet is walking on her frame 20 metres to dining room on her frame enjoys the other residence chat ( great for a wee woman who refused to go out of her home) she has the assistance of one but two for showering and when needed . Approx 7 days ago after help out of bed and up and about her care worker came back for her breakfast and my mother was sitting on the floor beside her chair lwhen asked did she fall she said yes . Staff called me and thought it best not to move her.An ambulance was called and it took 5 hrs before it arrived. I was with my mum sitting beside her on the floor along with her assigned worker chating to her waiting 5hrs for ambulance she could not get food cup of tea etc incase she needed surgery maybe fractured hip. Mum was taken to hospital alone due to Covid for xray to be sure of no breaks etc. . On a trolley bed for some time in AnE with no food or drink until xrays done she was and sore and fed up after 5 hrs sitting on hard floor she was admitted waiting for xrays in bed 2 days Xrays done NO Breaks Thank Goodness. No Bruising anywhere. ( I think she was smart enough to lower herself dwn to floor). They said doing head scan incase any wee bleeds this meant another long wait and kept in bed not toileting and getting more stiff and sore My mum does have some Dilerium which only became apparent during lockdown and like others not seeing her family , we Phoned and chatted but she luved seeing my grandchildren and I think she became depressed. Anyway her Head scan was also clear no bleed etc . My mum keeps saying she wants to go home to her “wee apartment” that’s her room with bathroom etc says she misses Bridie her assigned carer who is great with her took her out in wheelchair for icecream etc .But here lies the problem, because she is fed up and all sore lying down, she was refusing to stand up , sit in a chair, use a walking frame. She told nursing staff she was too sore and wants left alone. I’ve told her they just need to acess her and she can go home , I’ve also told the nurses how long she was waiting for Ambulace etc and that she is bound to be stiff and sore but with encouragement she will do it . I was pleased to see her sitting on a chair yesterday and a younger patient nxt to her told me an older nurse was able to get her to turn over in bed etc . I heard her tell physios she cant move to sore etc I offered her some chocolate if she moved her legs for them she did the scissors and lifted her legs like a balarina . Apart from being stiff and sore this is behaviour I’ve seen before. Now because she doesn’t tick all the boxes for the hospital eg using her frame etc she has been deemed as needing the assistance of two and they want to move her to a Nursing home. My mother does not lack capacity confirmed by hospital social worker . What she is doing is a form of protest as she just wants to go bk to her residential home. I know they have to do safeguarding etc and best interest . But I was told about this move on the fon yesterday evening. I’m so angry because I have repeatedly told staff and social worker she can do more and is protesting to get out God help her also told them julie likes to get her own way. Social worker at my request foned her residential phone they said she was doing very well no falks in past 4 yrs etc walks on frame they provide assistance of one etc told she acessed as needing two so obviously they said they wouldnt be able to provide two at all times. I’ve spoken to them and they are genuinely upset about it all but have said my mothers refusal to do things is keeping her away from them .The social worker kept saying to me but shes old and we could even do temporary with a view to going bk to her residential. I suggested Meadow Lands short stay orthopedics assessment unit.and the Social worker said MY MOTHER WOUKD NOT GET A BED FOR REHAB BECAUSE SHE WAS NON COMPLIENT. II said you have just agreed with what I have been saying all along she changed the subject and started to talk about fees etc and for me to find a place I like I said my mother likes her place she is in she gets the best of care . I will ge speaking to family and other people about this. I’m so upset and angry that a pensioner with Capacity is not being listened to because she does not tick all the boxes on the checklist to get home. I know this change at 94 will be detrimental to my mothers mental health not to mention my own due to the stress feeling as her next of kin and the person who knows her best I’m not being listened to even though the social worker says I am. I have to move fast on this as they want their hospital bed back. I am going to ask for a meeting and ask why has a 94 yr old with capacity deteriorated going from assistance of one for 4 years now to assistance of two in 7 days in the care of their hospital.i will be wanting to see all notes on her nursing etc belive me I will not back down. My wee mother is caught up in a tick the box system that is failing our elderly 😡
My husband was admitted to hospital on June 27th. He spent 10 weeks in hospital and, against his wishes, was put in a Nursing Home for a short term stay. All the necessary equipment at home is ready for his return home. He is not suffering from Dementia and can make his own decisions. He has Stage 4 kidney disease which he has had since he was six, and also has leukemia, both conditions are being treated. He is just not mobile and needs assistance getting in and out of bed. If during his stay in hospital they had not left him in bed for 10 weeks and done nothing to aid his mobility he would be home. During all this time I have not been involved in any discussions with either medical staff or social services. He wants to come home. I am considering asking my solicitor for advice.
This is a major thing about private carers job. Thank you for sharing!
My adult daughter came to live with me after being diagnosed with mental health and physical issues due to diabetis and being in a coma, She had no where to live as she couldnt care for herself and had lived in upstairs flat which when she came out of hospital wasnt any longer suitable, She has been offered a care package after an nhs assessment Which i turned down because i didnt want all this in my house which is so tiny, I said i would be capable to do my daughters care..Could my daughter or social services pay me instead of professional carers? She needs to be prompted to eat take her insulin, Help to bathe and get dressed, Also uses sticks to balance so needs to be accompanied everywhere for appointments etc It’s basically 24 around the clock care..
Question from Vicky: My gran suffered a bladder infection which caused her to have hallucinations so we took her to the doctors and they were not bothered so in the end we rang 111 and they advised us to take her to the hospital. She was in there for three weeks so she came home and had a 24 hour care as they said she has dementia 3 weeks later she was put into a care home as she attacked a care worker a few weeks in they started sending bills it came upto £3,000 so we paid it finally after sorting out the money now they want everything and there taking my gran to high court but she doesn’t own her own home and she has under £14.500 in the bank. Her pension is suppose to cover everything we don’t know what to do
Care system is ridiculous our Mum has been in hospital since June she has dementia is incontinent and although should be able to walk can’t through lack of use she used to have carers four times a day but kept falling over at night early morning since being in hospital I have realised she can no longer care for herself and we have arranged for a carer at home that will take care but the social will not defer the 12 week period payment even though we have put mum’s mobile home for sale so we can’t understand why they won’t do this the care home can’t understand why there is a problem as it’s never happened before the hospital insist she cannot go home and she needs nursing care but we don’t seem to be getting much help from anywhere to get her out of hospital into a care home
My father has been admitted to a nursing home. My mother is living in the house they jointly own. At the moment they are self-funding, but this will change soon to Local Authority funded. I know that the house my mother is living in is ‘safe’ as far as funding assessments are concerned, but I have been told that upon her death (subsequent to my fathers’) the estate will be ‘billed’ for the level of local authority care that has been provided for my father during his time in the nursing home. is this correct?
Thank you
Christine
Good morning Christine,
By the way ‘snap for our names’ 😀 I haven’t got an answer to your query which I realise was posted some time ago, but I am interested in knowing if you are any the wiser as I find myself in this situation with my husband who is currently in hospital.
I hope you had an answer and now have peace of mind. Kind regards, Christine.
My mother just been recently put into care home as she has vascular dementia. She had fallen outside and broke hip. She went to hospital and there they said she needed 24hr care. The social worker wanted to send her home, but she would have just fallen again, but hospital staff said was no way can go home. But we are facing same thing – mother losing her house that her and my dad bought, both her and my dad have worked all there lives, paid their taxes and NI contributions, but what for. To be told when most need care from the government they say no. Yet if they hadn’t worked hard all there lives and lived off the dole they wouldn’t have to pay. Should be means tested on the taxes and national insurance contributions. Basically get punished for being hard working.
Just going through the exact same set of circumstances you have been with your mum.
I agree entirely with your comments.
Both parents worked hard all there working lives what for ?
Next door neighbour never worked and gets everything paid for it’s not a fair system.
Agree totally. Just about to get into same saga for my Mum (96). She and late father worked hard all life, paid all taxes and NI …. now she gets penalised for saving a couple of thousand pounds to leave for grand-daughter in will. Will have to sell her little terraced cottage to pay for it. Punished for being hard working!
Even prisoners get better than the old and disabled in this country , they should have to repay the money it cost for them to stay in prison. or government spend less on making prisoners comfortable and more on the hardworking descent people
We must all understand that the Government are not our friends & do not represent us.
They operate with sophisticated , criminal intentions whereby deceiving, defrauding & abusing the citizens of our land in the most appalling manner.
Not until one experiences such repugnant disrespect & abuse in our final days, often suffering from illness, the Corporate health system which we collectively own, collude with local authorities to steal our money.
Whichever way you look at it, our experiences & stories paint a disturbing picture, similarities amongst all stories of woe told, we don’t count, they do not give a damn about us.
We are simply cash cows, to provide income to the State & its affiliates from the cradle to the grave.
That’s it folks plain & simple.. Time to wake up.
When is it safe and morally right to put parents house up for sale.
She has been in a carehome for 6 weeks. Is still in and out of hospital with no chance of returning home.
She is currently in the carehome under respite i think so when is it ok to put house up for sale.?
Thank you for this – so many need to wake up. Keep spreading the truth
Is There a way to sue the government, local authorities etc,! There must be some legal help available. My partner has been in a questionable care home for over 12months ! It takes me two and half round trip to see her..1/2 hour visit due to covid ..She was tested positive for Covid twice , numerous falls, left on a bed with no blankets. Staff and agencey staff leaving constantly ( untrained staff from agencies).I have LPA., but the council have applied to COP. To prevent me taking her taking her home. I don’t think her social worker has ever been to see her! All the council and social worker are obsessed with is charging you thousands of pounds, (how do justify these fees, and how can you break them down ! They even charge for extras!)and putting charges with compound interest against my partners home.They make huge amounts of money, but pay the care workers poor wages ,so we are forced to pay for a poor service. I am determined to get my partner home and give her some quality of life at home. It shameful system and should be legally contested. It’s supposed to be a caring civilised country.
I am going through the exact same thing with my parents, to the point we have been told we have to have the house on the market in 12 weeks to pay for my mums care as her savings have ran out
My Nan had to go into care home in 2015, we had to sell her home which was absolutely devastating for us. Nan’s house bought and payed for by my Grandad that sadly passed 30 years ago that fought in the war for this country and now all the money has gone in fees for Nan’s care? My dad is the only child my Nan and Grandad had and he was spoilt off both parents. My nan paid for Dad’s bills when he was stuggling, bringing three kids up on his own and now he can’t even turn to his mum for help. Where I know if she only knew what was happening against her wishes, she would have signed everything over to my father before she became ill. My dad has now been sent a letter of 28 days notice and a bill owing £29,000. I dont know what is going to happen; he applied for financial assessment in April 2017 and in Feb 2018 they finally get in touch with my dad, saying they won’t fund Nan because of 2 questions that weren’t answered. I am going to my local MP as I see this something that definitely needs reviewing. Can anyone help or had same situation?
My elderly Mum was admitted to hospital at the end of last year, we have now been told she has Vascular Dementia and has no capacity to make decisions for herself. Many weeks after admission a case conference was held and it was decided by the professionals that she cannot return home and that she will also require to go into a home with nursing care. We had a visit from a financial assessor to look at my mother’s income and we have been told that she will have to self fund the care. We only had access to a bank statement as my mother had never made a power of attorney, and we were asked if she owned her home, did she have a mortgage and was it up for sale. We were at the end of this meeting asked to sign a form giving the local authority permission to contact my mother’s bank, DWP etc. My mother has worked all of her adult life and scrimped to purchase her house back in 2001/2002. It looks like the little amount of savings she has will disappear in the blink of an eye and her house will have to be sold to pay for care, and we have been told that locally care fees are around £1100 a week. We are still reeling from this and don’t know what to do. There is to be some part paid by the LA but not sure what. Not sure how things work across the UK, we are in Scotland.
I have read with interest and concern the comments that have been made by individuals who are in situations that can only be described as morally unjust.
All the situations noted are unfortunately familiar to myself who is currently dealing with my aunt and my father – my aunt suffered a stroke some three years ago and my father is a dementia sufferer who has complications from two brain bleeds following two separate falls.
I have read and re read information from many sources on the ‘who should pay for their care’ question.
I am now in the process of discussing the possibilities of my father moving back to his own home and for my aunt to be also moved there.
I am told that my father will also be liable for his care costs as is my aunt even though they would never be able to survive independently in society and live a meaningful and purposeful life. Every assessment and discussion I have had relating to their situations seem only interested in their wealth – they have both saved and have houses. As the professional’s seem happy that their needs aren’t sever, by moving to my father’s home they will be avoiding the costly care fees that would be billed to them both.
Funded nursing care can then be provided and claimed back.
Not the ideal situation but here you have two elderly human beings who have never claimed any support ever in their lives from the government and have saved and invested their wealth to be told in their hour of need – thank you very much you two we’ll save a bit here again this year by taking your well planned future securities back!
What a fair country we live in.
Hi My mum is 83 and up till September of this year was very independent. She lived with her partner in a top floor flat. Now after a stroke she cant walk has no use of her left arm and has slight dementia. After having her bowel removed due to cancer Mum has a stoma bag which she is now unable to care for herself. Rehab are now talking about discharge but where will she go? Mum doesnt own a property and her partner struggles. diabetes/shakes etc to look after his own care needs so will be no good to mum.what will be her options?
Paul – if your mum is in hospital, she shouldn’t be discharged until a proper care plan is in place, and also ongoing care is in place (whether that’s in a care home, in her own home or somewhere else) and until she has also been assessed for NHS Continuing Healthcare funding. This may help further: http://caretobedifferent.co.uk/paying-for-care-between-hospital-discharge-and-funding-decision/
Becca, I’ve just been reading about your Mum and my heart goes out to you, and your Mum. My Mum is 90 and has been diagnosed with early dementia. I found her on the floor in her bedroom 3 months ago, where she’d been all night, got the ambulance, took her to hospital. To cut a long story short, the hospital discharged her after a week, never having discovered what had made her pass out, and despite me pointing out that she needed some respite or rehab until she was a bit steadier on her feet. Since them I’ve been battling with her GP and the social services and it is all one big scam, quite frankly – the GP says its a social services issue, social services “evaluate” her as independent because she can make a cup of tea and dress herself, and neither have done a thing to help! What do we do in this country when you then read horror stories like this about care homes? All my friends tell me I’m wasting my time but I too am persisting with the authorities, including the Safeguarding people, so I hope you have done the same. I hope you’ve managed to get your Mum moved now and that she is in a safer environment. Bev 🙂
Thank you for your reply, since I first wrote, the situation progressed with Mum having a significant fall at the end of May resulting in a head injury and a hospital stay for 6 days. Before this, she could still walk, although unsteadily and often needing support, and talk clearly. As of yesterday, she struggles to put a sentence together, managing Yes and No’s, but otherwise looking at me and unable to say what she wants to. Although there was no official injury that showed up on the scans at the hospital, I wonder whether either that fall or the cumulative effect of all the falls, has caused Mum’s current lack of ability to walk and talk. The falls have reduced because the care home are strongly encouraging Mum to remain still as much as possible. This is obviously not ideal for her as she wants to be active, but is at least keeping her injury free for as much time as possible. Also, as a plus, a DST meeting last week, found that she needs a higher level of care so we are looking for somewhere closer to home that is suitable, which is really good news as Mum wants to be closer to us again. I have placed a complaint to Adult Social Care about their lack of action whilst knowing about all these falls, and asked for a new Social Worker with the agreement of the Senior manager who came to meet with me. I have also asked for a Safeguarding investigation to allow better protection for Mum whilst she is still at this home, and asked why no one from Adult Social Care had done this months ago. I am currently hopeful that Mum will be able to get moved as soon as possible and enjoy the time that she has left. Thank you so much for your advice. Becca.
My Mum ,87, has been in a care home – chosen by Social Services as emergency respite as she had moved into supported living but sadly did not settle – since November 2015. Previously active and of a steady weight, she has now lost weight markedly, and since January 2016 , up until the start of April, has had 37 recorded falls where contact was made with the floor and a write-up had to be made in the Accident book. There have been many more where her fall has been saved by me, staff or the wall. Her injuries have ranged from bruising, grazes, lumps on her head, a swollen and badly bruised finger on two occasions, and currently huge bruises on her back and thigh from falls this week. Those in charge say that her falls cannot be prevented (so the mass of information on Falls Prevention/Reduction, and the regular Falls Clinics which take place at venues around the country, are a waste of time?). I say they could possibly be reduced, but nothing has been done to my knowledge and meanwhile my poor little mother is in pain from the falls, as well as from her Osteoporosis, and at daily risk of injury and worse, and i can hardly sleep for worrying about her and what she’s going through. The reason for the care home was because she had been confused due to the onset of dementia, and whilst living independently, had been going out at night thinking it was daytime. The care home was meant to make her safe. She is more at risk in there than anywhere. They say they can’t give her more one-to-one, but following a DST meeting, she doesn’t qualify for Nursing Care either, nor would it be in her best interests to move her, the Social worker says. The GP has been out but I don’t know if he saw the bruising. This cannot be right, the falls are almost being accepted as the norm. My Mum deserves better for her life at this stage. I am her main family visitor and i feel both responsible for standing up for her, and protective of her. Horrible.
Becca – write immediately to the Head of Adult Care at the local authority and stress in the strongest words possible that this is an urgent safeguarding matter, and that the local authority is currently guilty of neglect and placing your mum in a dangerous situation, which has resulted in injury. If you can get to see the GP again, he/she can also initiate an investigation – especially if he/she then sees the bruising. I can fully understand why you’re so concerned.
Hi – mine is a slightly different case where we have my 92 year old mother in law living with us. My husband (her son) and her do not get on at all. We both work full time and my mother in law is very needy by way of wanting company. She suffers with depression and just wants to be around people of her own age – she craves company. She cant live on her own now as she is fairly frail and gets confused BUT she isn’t “bad enough” for Social Services to allocate her a carehome (she doesn’t have any savings either or own a home). We are private tenants and so included her on the tenancy agreement in our current rental which expires in March. The tension between her and my husband is putting a strain on us all and it isn’t fair on my mother in law. We have entitlement for 28 days a year respite for her (funded) and was recently advised by a care manager to book her in to respite then refuse to pick her up! She said its the only way the system will be forced step in as she lives with us so isn’t their priority. I need to know what the legal implications are for us if we do this!
Hi – my dad is housebound, owns his own home and has 24hr care. I know he probably has little money left as mum left some, so between them approx £50,000. He has had the care for approx 5 months so there cannot be a lot of money left or at least it cannot go on forever. I have no idea how his domestic bills are being paid as I am not privvy to this information. I am one of three children and other siblings are dealing with this (a typical fall out in family). You all seem to be facing a huge battle, so I cannot understand our circumstances. Of course he has had all the assessments etc and maybe it has been harder for my siblings than I am aware of, but never the less it is all in place with carers and hospital bed. etc.
Would anyone be able to enlighten me as to how we seem fine and you are all struggling. Dad is 93 and is still very sharp mentally it is only the frailness. He can even move around sometimes with his frame.
Hi Denise – we do hear of cases that are relatively straightforward, and it could just be that your dad has a particularly good social worker or other case worker. If he needs 24 hour care, though, has he been assessed for NHS Continuing Healthcare?
This website (and the downloaded book, worth every penny) has been a god-send to me. My father spent a couple of periods in hospital after falls, and having once been discharged back home to disastrous effect, I had to find him a respite place in a care home to see if he could get back on his feet. Apparently he was assessed in hospital before discharge as being eligible for NHS CC but it took them over 2 months to go through the checklist. In the interim, Social Work carried out a financial assessment which I learned was entirely inappropriate. Dad’s eligibility for NHS funding has now been confirmed, but only from the date of the checklist assessment. Should I pursue them for backdating? Sadly he is now very ill (and the notion that he be moved to a cheaper home as they only pay up to a certain level is out of the question as far as I am concerned) but I am so pleased to have had the guidance and support from this website.
Thank you so much for your very kind feedback, Vicki. I’m glad the information has been useful. Funding is backdated to day 29 after the original Checklist. (See Annex F of the National Framework.) If the health and social care authorities failed in their duty to assess for CHC before that, you may have a case for further backdated funds. It could be a tough battle though.
Save yourself the heartache and sleepless nights…just accept its all a waste of time. My mom can’t do anything for herself…was told she needed 24hr nursing care for he dementia/alzheimers, double incontinence, unable to walk, chronic kidney disease, crumbling spine but does not meet CHC requirement for funding. Sadly i’m not clever enough to understand or take on the hospital that assessed her, so like the thousands of others she has gone in a home, selling her house, using up her savings and pension at a rate of over £3,000 a month.
One good thing to come out of this is, i’m spending all my money and pension as soon as i can get my hands on it and giving my house to my daughter.
Be very careful before signing over anything to other family members. There can be major problems further down the line if you do that. I can understand why you’re thinking that way though, Stan.
I’ve researched NHS CHC over the past 4 weeks. Mum in law had a stroke 3rd February, she was found by her carer and admitted to hospital A&E. She had bed assessed in October last year for a care package at home 3 visits PR day.
The 1st thing the family were advised was that mum needed 24hr care, double incontinence, risk of falls, lacks capacity, unable to be on her own. 9 days after her admission social services were ready to discharge her and asked the family if she had savings and her own home, a residential care home placement was recommended, at 91 mum was still partly paralysed from the stroke.
Social services were advising find the deeds to the property and sign these over to the care home. As no family member has LPA the hospital social worker advised apply the court of protection to act as deputy in property & welfare. At no time did hospital nurses or social services advise of any other alternatives.
From seeking our own advice via Age UK , Alzheimer’s & Care to be Different we have discovered whole reams of information that we were not told by the care professionals. We were not advised on any discharge procedures, or any assessment for CHC before deciding on a permanent placement in a care home, we were not told that there was intermediate care ( free for 6 weeks) to assess a persons health / care package needs. We were not even informed that a DOLS had been put in place, apparently this was done under the mental capacity act, mum was assessed as having no capacity to make decisions, she has vascular dementia and had substantial care needs before she was found collapsed with a stroke.
After three weeks mum started to recover physically and was asking & begging to be taken home, at the initial care package assessment (Oct 2014) it was recorded three time that mum did not want to go to a care home. When mum started to recover we discovered her care package had been cancelled after two weeks, we started to request her return home and were told by the hospital social worker that unless we could pay for 24 hour care costing £1,700 pr week then mum could not go back home.
Five weeks mum has been stuck deprived of her Liberty on the acute stroke unit at York City hospital, we learned of the DOLS at the “best interest” meeting on the 27th February, the paperwork was delivered after the 6th of March after we had written letters as advised in Care to be different ebook.
We have now got a discharge date, moving mum into an intermediate care home placement, even though the hospital social worker claims that only 3 weeks of funding remains!! Not sure how the hospital social worker has worked this out as all the information I have read indicates that up to 6 weeks is allowed for intermediate placements. We have also got a date for 1st April for a CHC assasement, even though the hospital claimed they carried out a pre assessment for CHC on the 9th of February which the Hospital claims she not eligible for.
I think the only way to make the powers to be take more notice is to involve media, speak to local or national press / tv.
Being told to get the deeds of the house signed over to the care home is outrageous. Plus it sounds as though the usual thing has happened in your mother-in-law’s case Loraine, whereby you’ve been asked about money before anyone’s assessed for NHS funding. Thanks for sharing your experience. There seems to be a lot of maladministration and incompetence on the part of the health and social care people involved in your situation. I can certainly empathise with your view that sometimes the only recourse is to shout loudly about it publicly.
Please do not give up anyone. We need to keep fighting to get the justice Pamela Coughlan won applied to everyone in the country. I wonder whether there is another way to highlight all this malpractice in the NHS – there is an election coming up, Angela can we petition parliament or something? I tried to get my MP on board but as a member of the current governing party, he does not appear to want to rock the boat.
I have finally succeeded in getting CHC for my mother, who like others here had a stroke, cannot move or reposition herself, is at risk of choking, and has dementia which makes her behaviour unpredictable (although the carers are always very reluctant to document that she has hit or scratched them – I have to keep pleading with them to do this). She is also depressed and goes through phases of refusing medication which we think is because she hopes she will die. She has no reliable communication either.
So if this sounds like your relative, don’t give up because they should qualify. If assessments were held without you, they are invalid, as they were not properly explained to you (or your sister etc). If they failed to send you the written results of the assessment they are also in breach of the Framework so complain. Yes it does feel like you are bashing your head against a brick wall, so I wonder whether we have to do some more to try and get this back into the public eye. Any suggestions anyone?
Otherwise, do not give up. Do not let them win!
Thanks for the info about lack of written response as we haven’t had any responses from the assessments that have been carried out for my mother, so as well as concentrating on getting an assessment done now I think complaining about nil responses will be my starting point for trying to sort out the problems of the past. After doing my “mock” checklist yesterday, my sister and I spoke to the nurse at our mother’s care home. They were really helpful and immediately faxed off a checklist – the scores on the checklist were 5 x A, 3 x B and 3 x C so we can now only wait (and gather supporting evidence) for the actual assessment.
Well said, Sara. Getting MPs involved can sometimes help but I hear very mixed reports about the willingness of some MPs to do anything. There are several petitions already active about CHC, which is good news. One of the problems is that the number of signatures required is great, and CHC is an area where still relatively few people know anything about it. There is more in the press now about it, which is positive, but there’s still a long way to go, and government (of any party) sadly has a vested interest in brushing it under the carpet. However… I hold on to the knowledge the the power of the individual over time can be great, and even greater collectively. I regularly hear of health and social care professionals jumping ship to work on this side of the fence because they are so disillusioned and appalled with the ‘system’. Whistleblowers are gradually gaining more recognition, although it’s still painfully slow and risky to blow the whistle. I think, bit by bit, we can all make a difference and bring greater pressure to bear, even if it doesn’t feel like it on a day to day basis. Not easy, and I can empathise will all the comments here.
My MP just wrote from Parliament that he is no longer an MP because he is campaigning for the election.
My mum’s MP Told me that he had petitioned the Secretary Of State For Health…. That was Three years ago.
A year ago, I asked him where the reply was. His response?…… Oh that is a Parliamentary offence to ignore an MP’s written question…….
A year on, have I had the letter in reply from the sec of state?…… Of course not……
My mother has now been in care for the last nine years having suffered a major stroke. I was told by the Doctor that she needed to go into care the social worker assigned to her first question was did she have a home to sell I was never there or told about any assessment that was required in fact the social worker never told me what she was entitled to. Mum had been paralysed down one side and was never going to walk again her health was very poor on her discharge from hospital, but the hospital made her pay for the ambulance to take her to the nursing home. I have never been present at any assessment of my mothers care I have tried to get continuing health care funding but she is deemed not bad enough even though she has now been bedridden for the last three years cannot feed herself has to have thickened drinks and severe dementia unable to speak has always been doubly incontinent she does get the nursing care allowance of £110 per week I have tried in vain to get the report that was done for this assessment since last October. I have felt absolutely alone with this for the last nine years but it always seems as though there is some brick wall when trying to get any justice.
I’ve just gone through a “mock” checklist with a friend who goes through these as part of his job. He came up with the decision that our mother scored 3 x A, 1 x B and 1 x C and said that she would be likely to be awarded the nursing care allowance that your mother is in receipt of (our mother is already receiving this too). This was not what I wanted to hear as I feel that our mother should be entitled to NHS Continuing Care. He asked me why I thought that when she was getting all of her nursing care paid for and I was unable to answer this – however I realise I would have to come up with an answer at a real assessment so have come home and looked through the information I have collected and came up with the following: My mother is entitled to NHS Continuing Healthcare because her care needs are over and above those of Pamela Coughlan and the judge in that case ruled that a Local Authority should only provide care that is (i) “incidental or ancillary to the provision of the accommodation which a local authority is under a duty to provide and (ii) of a nature which it can be expected that an authority whose primary responsibility is to provide social services can be expected to provide”. Pamela Coughlan’s needs were greater than those for which the local authority could be expected to provide therefore she was entitled for NHS Continuing Healthcare. The ruling also indicated that it would be logical that anyone with needs the same or greater than Pamela Coughlan should also be eligible for NHS Continuing Healthcare.
I think that fits both of our situations/arguments so hope it helps! I too have found that it feels as though you keep hitting brick walls, but all we can do is keep trying. Sorry I can’t offer any advice on the assessments that may or may not have happened. I think that we may be in the same situation as you with that too.
Elspeth – you mentioned that the person who did the mock assessment asked why you thought your mother should receive CHC when she would get all her nursing care paid for anyway via Funded Nursing Care (FNC – weekly allowance). There are two vital points here: 1) many people feel that the FNC payment nowhere near covers the nursing care needed, and 2) if a person’s care needs are primarily health needs, CHC should cover ALL costs, including accommodation costs in a care home. The two things are quite different. If you were to settle for the FNC payment when your mother should in fact be eligible for CHC, she would end up still paying for most of her care. The legal limit beyond which a local authority cannot provide care is vital: http://caretobedifferent.co.uk/nhs-continuing-healthcare-assessments-2/
Thanks for pointing me to this link Angela as this is what I am trying to push. My mother has been in receipt of FNC since 2008. I am looking at two things at the minute. Firstly I need to have my mother assessed for continuing health care now and need to prove that she is eligible for CHC. I need to do this to prevent her from having to pay any more fees as we are currently selling her house and have received a bill from the LA for £80,000.00 (due from the date of our father’s death in 2009) which is increasing by the day. Secondly I need to put together evidence to support the retrospective claim that I submitted by the September 2012 deadline in case they reject my claim. I believe my mother should have been awarded CHC when she left hospital in 2008 as the hospital said she should not go home, but the family did not want her to go into care. However, although our SW tried to put the maximum care package of four visits per day which had to be supplemented with care from my already very ill father, myself and my sister we could still not manage our mother at home. Our mother was assessed by an EMI care home and also a residential care home who could not meet her needs. In spite of all this her original NHS Assessment score came out as one high, one moderate and seven lows (two no needs). There is a lot of conflicting information on the assessments which I am going through and highlighting. I don’t know if we know about all of the assessments that have taken place though. I believe there was one carried out after September 2012, but have never received confirmation of the result of this one (my sister attended it). At the time of the first assessment we thought our mother was being assessed to find out what type of care home would be able to cope with her as none of the homes would take her. After researching on your site and looking at other info on the internet, I am now convinced her needs are greater than the local authority can lawfully provide.
Thanks for your encouragement, as after all this time I now know that we are right to fight for CHC.
Thanks for your kind words, Elspeth.
My heart goes out to all of you, I have a 90 year old mother in hospital at the moment, I have been told that she needs 24hr care and looks like there is no way having read all your comments that I am going to be able to get funding I was hopeful, when all of you have such deserving cases what hope have I got !.
Lesley
Lesley, you mustn’t fall at the first hurdle! If you watch the Pamela Coughlan video on YouTube it should give you some idea of the level of care the NHS should provide. There is loads of information on this site to help and there is a really good video on the laws surrounding NHS Continuing Care on YouTube by Luke Clements of cardifflawschool that is easy to understand. Think about the level of care your mother needs and go through these yourself using the NHS Continuing Care Checklist, then the Decision Support Tool for Continuing Care. After doing this and you think your mother should qualify go for it! I read that you should try and get your Social Worker on your side because it is actually more beneficial to the Local Authority if a person is funded by the NHS and the LA is breaking the law if they provide care over and above what is expected. Keep records of everything and make sure what they say about your mother is accurate – for example it is recorded several times that our mother can chose her own clothes, yet she has never been able to do this from day 1 of going into care. Also make sure everyone concerned follows the correct processes and either don’t sign anything or note what you do sign “without prejudice”. We can’t let them do this to us, especially after reading the info on sites like these and realising a lot of what they are doing is unlawful. Hope this helps and if anything I have put in this reply is incorrect I welcome anyone to point it out as it will help me too!
Also, make sure your mother is assessed before she leaves hospital. We are in the situation we are in now because we didn’t know any different. Because of all of the information available at least you have some facts to support you! Hope I have inspired you to at least give it a try!
Here’s the Luke Clements video: https://www.youtube.com/watch?v=HrpFLLwGqhs
I often think that the ‘system’ wants people to give up and not fight, and the misinformation families are given by health and social care teams adds to that, but if you have the energy it can be worth pursuing.
My mum is in a home although she has not been discharged from hospital she has had to fund her own care in a home,I have just tried to apply for NHS care but although she can not do anything for herself and being doubly incontent plus not being able to walk or even moving herself to ge comfortable and having to be turned every 2 hours at night in fact the only thing she can do is put a spoon to her mouth to feed herself she doesn’t qualify for NHS continuing care!!!!
I could cry when I read these posts. Our family is in the same situation and mum has been in care for six years. I put in an appeal by the deadline and have heard nothing in relation as to how the appeal is going – when I ring, I am told that there is a backlog, which I understand the government have given a deadline of sometime in 2016 to clear. During one of my phone calls I was advised that my mum has had another unsuccessful assessment since I submitted the appeal and was told that you now only get six months to appeal. It is well over six months since that assessment was carried out. One of my sisters thinks she may have attended that assessment, but we haven’t had anything in writing to advise us of the result. We got a bill for £80,000.00 from the LA which is for the period beginning when dad died and mum became sole owner of the house, this bill is growing daily so when the house is sold there will be nothing left. I have watched the video of Pamela Coughlan and our mum was worse than Pamela when she first went into care and she has worsened since then. Also when mum went into care she was shoved from one home to another because the LA were closing their homes and no-one would take her. She was so confused and frightened and we couldn’t help her by explaining because she could not understand. This treatment is despicable, inhuman and judging by all of the posts I’ve read on various sites – widespread. We are due to have a meeting, which I understand is with the LA to review the care plan in March, so will go in prepared with the very useful information from this site. Thank you Angela!
Thank you for your kind feedback, Elspeth. if you didn’t have anything in writing about the outcome of the assessment, or any information about appealing, or any rationale for the funding decision, these are further grounds for complaint.
I totally agree with Simon above, my mum was totally independant living on her own in a 3 bedroom house, mum had a severe stroke and spent 4 months in hospital. When it came to being discharged she was unable to return to her homeas she was assessed as needing 24hour care, so mum was placed in a nursing home. Mum had the assessment down for national health funding but was refused because they said her needs are social not health !!!! Oh and she owed her own home!!!! Mum is bed bound, mum can’t wash or dress herself, double incontinent, can’t take medication without supervision, has now been diagnosed with dementia, but this is all social , she is like this because of the stroke not just old age!!! But mum has to fund herself. Excuse my rant but the bar is high. How severe do you have to be to get it funded!!!! Mum went from being totally independant to needing 24 hour nursing care, staying at home wasn’t an option neither was a care home, but they say her needs are social. This really isn’t right or fair.
If my mum’s case is anything to go by then I would say that the system is absolutely unfair, even if an initial assessment (checklist) is properly conducted at the end of a hospital stay. Mum was independent when she went into hospital but needed fulltime care when she came out thanks to a stroke during an operation. Whether mum should have been subjected to that operation is questionable but you try bringing a medical negligence claim for someone who is nearly 90. So mum went into care and she had the checklist done. I have said it before through this website but in my opinion the bar for the checklist is set so high that somebody can fail even though their disabilities (mum cannot do much for herself now) are relatively severe. I am no great brain but we were present for the checklist meeting, had already prepared our answers and essentially didn’t disagree with the findings. So … mum has to pay. That cannot be right.