5 things to check before your relative is discharged from hospital

5 things to check before your relative is discharged from hospital

Many families report that their older relatives are often forced out of hospital and into long term care – or back home – before proper health needs and funding assessments have been carried out and before suitable care provision has been put in place.

If a hospital decides someone no longer has ‘acute’ health needs, it will want to hand the person over to the local authority as quickly as possible – and will often put pressure on the local authority (and on you as the next of kin) to get the person discharged.

If you have an elderly relative in hospital and you’re being pressured into finding a care home for them – or the discharge team are threatening to find one for you – follow these tips:

1. Your relative should be assessed for NHS Continuing Healthcare funding before they’re discharged. This is NHS funding and it covers 100% of the costs of ongoing full-time care if you need it primarily for health reasons, i.e. you have what’s called a Primary Health Need. Many people are discharged without this assessment having been done – effectively forcing them to pay for care before it has been properly established that they need to.

2. Make sure the hospital knows you want to attend all assessments. If you have power of attorney for your relative, this should be straightforward. If you don’t, but your relative still has mental capacity to give consent to you being their representative, this should also be reasonably straightforward. If you don’t have power of attorney or consent, it can be more difficult to get to see assessment notes – but always ask. You don’t have to tell the hospital that you don’t have power of attorney. It’s up to them to ask you.

3. Make the Discharge Team aware that you know about NHS Continuing Healthcare funding. Also, make sure you have been given the opportunity to attend these assessments and appeal any flaws in the process that has been used – before your relative is discharged. Once the Discharge Team is aware of your knowledge, they may stop pressurising you so much. Without this process being complete, no reliable decision can possibly be made about who is actually responsible for paying for care.

4. At the point where the hospital decides your relative is no longer their responsibility, the hospital will issue a ‘Section 2 notice’; this is effectively a notice to Social Services that the hospital is handing over responsibility for your relative’s care to the local authority. However, if your relative needs ongoing care for health reasons, this handover should only be done after a proper assessment for NHS Continuing Healthcare funding has been carried out.

5. Once your relative is ready to be discharged from hospital, make sure that on the day of discharge they are still properly cared for – and not left in a Discharge Lounge for hours. (We do hear of this happening.) Your relative should be properly dressed and fed, given enough drinks, and have any continence needs addressed throughout. Just because the hospital may want to free up their bed in the morning, doesn’t mean the NHS can wash its hands of responsibility for care while your relative is still on the premises.

Read more about NHS Continuing Healthcare funding

Read more tips about Continuing Healthcare assessments and hospitals


  1. Aimi 8 months ago

    My 95 year old Nana is currently in hospital and has been for over 3 weeks now. She originally went in with chest pains and they diagnosed a chest infection, an enlarged heart and fluid on her lungs. They have drained the fluid off but the chest infection turned into pneumonia and whilst in hospital they told us that her heart, kidneys and lungs were failing and that the pneumonia wasn’t responding to the antibiotics so they needed to start her on palliative care. This was a week ago. Since then she has stopped eating, can’t get out of bed or use the toilet on her own and is on oxygen. She has also become confused and is hallucinating. They never did start the palliative care as they said they felt that she has picked up a bit! She was on a cardiac ward but I called this morning and they have moved her to a discharge ward and were asking me about her home life and support (she lives alone with one carer going in each morning to get her up). Prior to going into hospital she was healthy and sound of mind and perfectly capable of going to the toilet and cooking meals for herself etc. The person she is now 3 weeks later is totally incapable of any of these things. I am her next of kin due to my dad no longer being alive and him being an only child. My Nana has given her consent to the hospital when she first went in for them to discuss her health with me but I don’t have power of attorney. What can I do to make sure that she isn’t discharged too early and with no safe environment to go to? Am I able to arrange an appointment with her consultant seeing as she has given her consent and if so, how do I go about it? Any advice would be greatly appreciated as I am worried sick about them sending her home too early and something bad happening to her. Thank you.

    • Clive 8 months ago

      Contact neighbours to see if they are able to keep an eye on her, and basically stall her discharge. Can you take a week off work to smooth over her return? Honestly, whatever they say about stopping palliative care, your description suggests that they won’t want her life to be ongoing in which case a return home (escape from that) is the best option – but only if she has some kind of backup.

  2. Daryl wagstaff 1 year ago

    My Father has sadly been in hospital for 8 weeks and he has been granted fast track NHS Continuing Healthcare Funding as he has vascular dementia and lung cancer . We have looked at several nursing homes but there are none available where we live and the nearest one is 16 miles away. Several have assessed my father and turned him down; some cannot meet his needs and we have refused one as it was 26 miles away and was a shared room. The other smelt of urine from the moment they opened the door we were warned by the Nuse Ward Manager that this Trust has a three strikes and you are out policy and we would be receiving a letter saying we had 72 hours to find somewhere for my Father or the Trust policy would place my dad anywhere , we have POA – we are having him assessed today by another nursing home 16 miles away no public transport although I drive – my dad is not yet ready for a Hospice he is 90 this nursing home has had 3 ‘requires improvement CQC’ if we turn it down are they allowed to move him anywhere without our consent- he has been well cared for in hospital can anyone offer any advice thanks

    • Jan Wilmot 1 year ago

      Have the nhs assisted in finding a suitable place? They were a great help and found good care at half the price we found

    • Clive 1 year ago

      Replying to Daryl, I am not trying to freak you out but if the State has voluntarily given your Dad free fast-track NHS Continuing Healthcare then it’s likely his prognosis is three months. The ‘Continuing’ part of that is a misnomer, they wouldn’t fork out that kind of money if they really thought it would be ‘continuing’ for long. What’s more, if my mother’s case was anything to go by when we were ‘generously’ given that package, a care home may then be tasked with killing off your parent via dehydration. We found it very hard to get Surrey care homes to give my mother drink, and we weren’t supposed to know about it, but all queries on the subject met with stonewalling, evasions and nervousness from the care home manager.
      That said, we did not have LPA in Health and Welfare so they could make merry with my mother’s medical notes, because we weren’t allowed to see them. They had ‘severe dementia’ written all over them, which I understand gives them a licence to kill. Thing is, my mum had advanced Parkinson’s but not dementia, she didn’t talk much but did pick up on stuff, she knew who she was, who we were, where she was and so on.
      Look out for ‘severe dementia’ on the notes, as you say you have LPA in Health and Welfare. The term ‘TLC’ – Tender Loving Care – should also raise red flags, as that’s another misnomer that seems to mean, it’s all over for them, just be nice and let it happen. Whether they like it or not.

      Anyway, if your Dad is on free NHS Cont Healthcare, then you don’t get to choose the nursing home, you are presented with a list of choices you have to work through, as I’m sure you know. If any of them have a ‘dehydration’ programme as some Surrey care homes appear to secretly have (it seems to be the Liverpool Care Pathway in disguise) then you will need a care home with unrestricted visiting hours so you or another relative can visit and give drink yourselves, preferably in a nice environment.

      On the other hand, it is good that an NHS person forewarned you about one care home being rubbish, as we never got tipped off like that. That’s something.

  3. Jan 2 years ago

    So helpful to know these things! My dad is89 andhas been in and out of hospital over the last couple of months. He is not cooperating as wants to go back to just him and Mum as it was before. However I find I’m not involved in anything unless it suits as although I have POA he is deemed to be of sound mind.
    Last time it was an emergency discharge as hospital was on red alert. He can hardly stand yet was assessed as needing half hour in the evening and 40 mins in the morning to provide support and rehabilitation including showering. The time pressure was such that he fell while the carer was trying to get him to the bathroom and he didn’t manage a shower in10 days… yet once again we are having to battle to get an assessment before discharge!
    I live 3 hours away and it is taking over my life trying to manage my parents. Not least because every time I speak to someone the case appears to be moved to a new person. If they were trying to make life as hard as possible and to make Dad feel like a package to be passed about. They are doing a very good job!

  4. Barbara Cooper 2 years ago

    This is important to know to help relatives when they will be discharged from the hospital. Thank you for sharing!

  5. Ann Athraby 2 years ago

    My sister is mentally handicapped,she has been in and out of hospital due to old faeces blocked. she has had so many enemas and laxatives since march this year and always gets discharged. also she has been in 11 times with pneumonia . now they have discharged her saying there is no more they can do and she will be on 5 enemas and 5 laxatives a day for life. she will also always keep getting pneumonia.she is always in pain and does not understand what is happening to her . also she cannot talk. we are worried sick if it is cancer or the old faeces could poison her and are afraid to lose her.please can someone help her

    • B. Miles 12 months ago

      Ann . My mum had the same problem with blocked faeces and had to have enemas. In the end we asked the hospital to try a different diet. All wheat and sugar and lactose was cut. Fresh fruit and vegetables were added to her diet along with plenty of water to drink. We gave her oregano oil capsules which act as a natural antibiotic. It worked . She no longer needs laxatives and her health has returned. It may not be the answer for you but it’s worked for us.

      • Liz 4 weeks ago

        This does make me cross. Your Mum was probably in so much discomfort. Everyone needs to drink plenty of fluids not many of us drink enough. An elderly relative of mine was in hospital and had the same problem. I moved in with them for 10 days when they were released and did all the cooking, plenty of fresh vegetables and fruit plus porridge for breakfast. A glass of water every hour and mid morning coffee and afternoon tea soon had them feeling a lot better. They said the meals in hospital were very stodgy and they felt it ascerbated their problem, they also said they were not allowed to drink that much water, I felt they were dehydrayted too. My father who is 88 went to see them and as an ex nurse was horrified by what he saw, he was straight in the kitchen making all and sundry cups of tea. I thought we would be chucked out . I asked to speak with the Ward Manager and was told I couldnt ??? I asked in the end to seethe doctor in charge of the ward and he was hlepful but said they were so short staffed they couldnt watch what everyone ate and drank !!! I wa stunned. My Dad was annoyed he said that is one of the main principles of getting a patient on the road to recovery and being discharged, healthy nutrition, maybe the principles have altered ? Fast forward, we made an official complaint. It was noted and the hospital trust said they would investigate, but surely anyone with chronic constipation should be give appropriate dietary advice and drink the correct amount of fluids. Check the web guys you will be amazed. Stay safe

  6. Sharon Jackson 2 years ago

    My father of 95 is due to be released from hospital after a 7 week stay due to an infection and delirium. He has been offered a care package to which he has refused! He thinks he can go back to how he was managing his life at home using his push trolley. Before he was ill he would go and get his own shopping by walking 20 mins with his trolley. Also catching the bus to have his hair cut in town and any banking. He also heats up food by a gas cooker, won’t use a microwave.
    My hands are tied as I do not have power of attorney. Can you advise on what to do for his best interest please. He refuses to move anywhere, so it’s an accident waiting to happen, again. Independent but totally stubborn is my father. I do not have any other spouses to rely on, just my husband for support. Can you tell me who I might be able to contact on this delicate matter please.

    • Mel H 1 year ago

      I’m sorry for the late reply, just seen this, but if it may help others in similar situation,.. It is very important to get Lasting Power of Attorneys for Health and Welfare completed BEFORE mental capacity is so bad that would not qualify under the Mental Capacity Act, that is that the person or relative for whom it is needed both a) understood what is means and b) could retain that information long enough to make the decision to enter into it at the time of signing. If however mental capacity is such that this is not possible then family will need to apply to court to become a deputy in order to make decisions for that person. The latter can be both very time consuming and with expensive ongoing fees. Far better to have LPA in place asap and well before mental capacity is lost. At present it costs around £84 for each LPA per person.

  7. Pete B 3 years ago

    Hoping for some advice. My dad who is in his mid 70s and survived a very severe stroke 25 years ago is currently in hospital. Back in July he was found collapsed outside the house and couldn’t remember how it happened. He was admitted to A&E and eventually a rehabilitation centre where he staid for several weeks. During that time hew was unable to regain use of one leg but was discharged home where he had three more falls. Finally he went back into hospital. My mum was definitely unable to cope even with help. I have now become very involved and have found the advice and articles on here extremely helpful. Today I spoke to dads social worker as he has fallen out of bed in hospital. The hospital are now saying the physio ward he is on have got him as far as he can go (no improvement) and are looking to discharge him to a nursing home. The social worker says they can do the Continuing Healthcare (CHC) form. Should I believe him or insist that it is done in hospital?

    • Sheila forsyth 11 months ago

      My sister has been placed into respite due to the flat we live in being upstairs, she is a big lady over 20 stone due to oedema because of heart failure, she has severe copd. The care home they av placed her in are not meeting her needs as she has a mask given by the hospital to stop carbon dioxide building up In her body, its vital she has this mask as she is on 24 hour a day oxygen an this is causing the build up of carbon dioxide. They are not managing all her other needs also. Can I get into trouble if I bring my sister home as there are only safeguard issues around the flat and not around her. Can anyone help me pls as I want to bring her home? Thankyou.

  8. Dharmendra Patel 3 years ago

    My dad of 81 years has been in hospital for nearly 8’weeks now, he was originally taken in with swallowing problems as he was unable to keep food down. He previously had throat cancer and they are now saying that he has a mass at the entrance to his stomach. They were feeding him through a NG tube but now find it difficult to get it into his stomach. Whilst in hospital he suffered a heart attack and is recovering streadly and they tried to perform a stent into his stomach to help him eat. I went to hospital today to find out that they wish to discharge him home so I questioned them as to how is he going to get hydration and any nutrition as they were unable to carry out the stent due to his oxygen levels falling wrist performing the procedure. Looks like to me that just want to get rid of him and have a free bed.

    • d patel 3 years ago

      Hi Dharmendra,

      What happened with dad thereafter? I am currently dreading a meeting with the local hospital who have washed their hands to my 83 year old mother after she went in for a knee replacement and we were told that she has cancer. They transferred her to a appropriate hospital where they took 10 weeks to confirm cancer and say as it is late stage and considering mum’s other condition and age they basically would like her bed. I am reading up about the hospital and social services obligations and wonder if you had any tips on the same
      Devendra Patel

  9. Denise 3 years ago

    Just remember there are many thousands of people who in difficult circumstances have had fabulous care and very well thought out and successful discharges from hospital.

    • Debra Dougall 3 years ago

      Yes, there are, but that gives no comfort at all to those who are not having fabulous care and successful discharges from hospital.

  10. Annie Elizabeth 3 years ago

    My mother was in hospital for 9 weeks then moved to a care home for 1 week. She was in hospital as she was confused etc but had her 3rd water infection in 2 months.Phoned 111. They agreed she needed assessing. So took her to hospital.
    That day though I had no end of people coming to assess her. I told them that I never once saw a physio working on her in hospital. Never saw her being encouraged to walk. On her return from hospital. The carer had found her on the floor.The Nurse that came said that Mother needed intensive physio to get her to weight bear. I was told she had to go back to hospital and the carers had been cancelled. The care team phoned for an ambulance to take mother back . I do not have LPA for her health and well being but I do for finance. I put back the security password on her details as I had all the 9 weeks before. But they would not use it and removed it saying as she has the capacity to know what she wants herself. She did not know they had removed it. I was told she had told them that she wants to go into a care home. I asked her why and she said she does not she wants to come home. But as she has told them she wants to they can not change it. I think they can. I was not informed on any thing and they told me I am not allowed as she has the capacity to know what she wants. She has Alzhimer and the scan shows she has had it for a year. I went in with the LPA forms for her to sign with the witness. They stopped me doing that and told her not to. They even got security in. I have been told to get social services in now by friends.Since going back in they say she has to wear a catheteur as her bladder is not working. Strange as she has been double incontinent for the last 6 years. I feel this ward and staff are controlling Mother. I have had lots of things put into the house and her bedroom is now downstairs and I have life line coming to set up the life line buzzer. But the hospital say she wants to go into care. What can I do.

  11. Eccles 4 years ago

    My mother in law is currently in hospital with mental health issues (she was admitted under section 3, 10 years ago and discharged with 117 aftercare). The team have just informed us that this current admission (she was admitted for this stay 1 1/2 years ago) and that they are unsure if she was discharged from section 117 prior to this admission so we have no idea if we need to apply for CHC or not at this point but I would rather be prepared when they spring the Decision Support Tool (DST) meeting on us.

    The hospital has told us she cannot return home and already asked us to look at 2 homes (neither seem suitable as she has very severe functional mental health issues rather than the dementia that the care homes appear to focus on. In fact one of the homes has already informed the hospital that they could not care for her. We have found one home ourselves but the hospital have said there is a 6 month waiting list and the social worker in a separate meeting has said its a particularly expensive home but it does have clients with similar needs to my mother in law.

    So my question – is there a limit on Continuing Healthcare (CHC) funding if no other home will accept my Mother in Law because her case is so complex? The hospital are not wanting to wait for a bed to become available but can they discharge her to somewhere where she would be unsafe because of her needs?

  12. Louise Davies 4 years ago

    Hi, wondered if anyone can guide me through this minefield of discharge from hospital.
    My husband who is only 53 years old, came back from a holiday with pneumonia and was taken into hospital, the pneumonia attacked his major organs leaving him slightly confused, unsteady on his feet and with stage 3 liver damage. Whilst in hospital he had a fall from his bed and ended up with black eyes’ bruised cheek bone and split lip. Short time after he was discharged still Ill even though they promised he would have rehabilitation, which never materialised.
    A couple of weeks later he was admitted again with a bad stroke and had another one whilst in hospital. He was expected to survive, but he did. He’s had various complications in the 9 weeks he’s been in hospital along with a bout of norovirus. The strokes have left him blind in his left eye, unable to walk, feed himself other than something he can hold in his hand, double incontinent, cannot wash and dress himself or brush his teeth and has vascular dementia.
    A few days ago I was asked to sign a section 2, which I haven’t. Then yesterday was told a social worker had been to speak to my husband and asked him about his finances.
    Today I was told that because he’s been in hospital 57 days his time is up, and if he stayed any longer they would charge me for him staying in on a daily basis.
    I have asked all along for him to go into rehabilitation and then reassess his needs, but they said that he would not get any better and I reiterated that they also said that he would die and he hasn’t.
    They refused as they would be wasting money. So they are trying to send him home, bearing in mind we live above our business (tenants) and that he would have carers coming in each day to get him up and put him to bed. I told them that would be impossible as he needs more care, he would be stuck in one room with no chance of getting outside, what sort of quality of life would that be, I wouldn’t do that to a dog. Who would inject him with his medication, who would give him enemas that he needs to stop toxins building up, how long would he have to sit in his own faeces and urine before they came again, I live here on my own and it needs 2 people to lift him, and I work between 60 to 70 hours per week, did they want me to give up my job and go on the dole??
    I don’t know what the correct procedures are, or what they should and shouldn’t be doing and what my lovely husband is entitled to, HELP.

  13. Scott 4 years ago

    Hi all, until recently I was caring for my mum who is suffering from dementia. I was never told by either the GP or Adult Social Services and only found out 12 mths after diagnosis on a visit to see mum, it transpires that the onset was found 6yrs earlier on a brain scan following a nasty head injury but was not diagnosed at the time. By the time I found out it was pretty much too late to put Lasting Power of Attorney (LPA) in place and Adult Social Services (ASS) decided they would lie about me committing fraudulent money activity and froze mums money and bank account for almost 9mths leaving her with no money or care. I supported her in these difficult times. She is now in a EMI unit under section 117 aftercare, ASS have informed me they will be applying to the Court of Protection (COP) for mums property and affairs and advised me to apply also. I have refused on the basis that mum and I had at least 6yrs if we had been told in 2008 following the brain scan (if diagnosed) never mind 2014 on diagnosis, informing the family is something that the GP and ASS are required to do by law, and in 2014 mum still had the capacity to put LPA in place. They turned up unannounced at the EMI unit to do a capacity test on mum, are they allowed to just do that without informing the family? The police were also aware of ASS and what they were up to, they didn’t contact me either, if I was committing fraudulent money activity shouldn’t they have arrested me? This has consumed my life for the last two years and am seeking some help or to be steered in the right direction to a good lawyer, can someone help please?

  14. jacky 4 years ago

    Please help, mum had a fall, she has broken bones – not being fixed, is confused and catheterised, cannot weight bear, not self-feeding, all a change from the fall. The hospital want to discharge her in the next week. there is no POA, we were working on it, her home is completely unsuitable. They are having meetings but told us nothing until the duty social worker got in touch and suddenly made this statement about discharge. Can this happen?

  15. BRIAN HARD 4 years ago

    My dad went in the hospital July 4th 2016, for constipation; he was weak and needed help to and from toilet. The nurse helping him was way to small to handle him and he suggested to her to get help, ended up dropping him wedged between toilet and wall which hurt his leg and had to have surgery, since then he’s been to rehab, hospital, rehab, hospital and rehab now. During this time he’s had pneumonia, urinary infection, eye infection, something i think called msr that went to his kidneys, and still the constipation. I talked to the rehab place and i agree with them why do they keep checking him out of hospital before he is well. He’s back in therapy but unable to do therapy from the pneumonia, and urinary infection etc. He was walking when he went to hospital on July 4th and hasn’t since then and it seems they’re making him worse. Should i get a lawyer or what can i do? Thank you

    • Angela Sherman 4 years ago

      That sounds very distressing, Brian – and it sounds as though the hospital has been negligent. You may need to seek help from a clinical negligence specialist – but it may be worth making a formal complaint yourself first.

  16. Jade 4 years ago

    I wonder if you can help me please. My mother and I are not close and have not spoken for more than a year. I have been called by the hospital and told she will be going home. I had no idea she was in hospital. I am not in a position to look after her. What should I do please, I am an only child. Many thanks

    • Angela Sherman 4 years ago

      Jade – your mother should only be discharged from hospital if the correct and appropriate ongoing care is in place, a proper care plan has been drawn up and the correct funding assessments have taken place. You should not be expected to look after her if you can’t.

  17. Clive 4 years ago

    Oh, and have just read Shel’s comment above. Yes, that is it. When the council and their care homes screw up and nearly kill your relative, they will go on the attack, it is a form of victim blaming, to put you on the back foot and maybe make you not realise you have a legal case against them. So they do this by raising Safeguarding concerns against you and often will do this behind your back while being all smiley to your face. It really is amazing.

    Eileen Chubb of registered charity Compassion in Care knows a bit about this. She really deals with whistleblowing, in the main however.

    You could see your MP, depends what they are like however. Again, all this easier with PoA.

    Make a note of everything, covertly record all meetings with Social Workers (they have been known to doctor the minutes and lie basically so you come out really bad and not how it really was) and send off a Subject Access Request to the Adult Information Governance Office (contact details on council website) to find out all they have got on you, all Safeguarding concerns. Then make an Official Complaint, using that info. Also send a SAR to the local NHS commissioning group.

    Beware any Social Worker saying they want you to get your Mum home. That is usually a ruse, not sure why they do it. It could be because then they can authorise a fishing expedition against you to ‘demonstrate’ why you are unsuitable as a carer, but pretend to have made a serious offer all the same.

    You can also contact an Independent Advocacy Group but exercise caution; it has been known that they can be biased and have their hand in the pocket of Social Services, so be wary if they suggest it.

    Do your own Safeguarding concerns against the hospital or care home. Get a spy camera. Threaten to go the press, maybe, and mean it. But watch your back at all times.

    Again, so far the Nurse and Midwifery Council are the one option I’d recommend regarding overt abuse. Often the hospital can release your relies’ medical notes if you are registered next of kin, even if you don’t have PoA.

    Hope this helps.

    • Clive 4 years ago

      Hi, referring to my comment above about how social workers and Safeguarding heads pretend to allow you to get your relative out of a care home and back to the family home, when they have no actual intention of doing so.

      It turns out they do this so they can secretly obtain a court order STOPPING you from moving your relative from the care home, by making out that it’s YOU who want to get your relative back home, and that you’re likely to abscond with them. Sneaky, no? They can’t get a court order if you merely express and interest in moving care homes, they can’t make that work for them. So they will blatantly mislead you.

  18. Clive 4 years ago

    One very important point, more important than all the others (though I’ve only skim read) is this: Get Lasting Power of Attorney in Health and Welfare for your relative while they still have mental capacity. Do it now. Once they’ve lost mental capacity, or are deemed to have lost it, you cannot get it as your relative is simply not in a position to grant it. Being Next of Kin counts for little legally. Without PoA, Social Services and the entire NHS apparatus can ride roughshod over you, trust me, and they will. Any info you need to get about their medical health, they can deny you as you ‘dont’ have PoA’. You will run up against the infamous ‘wall of silence’. Nobody mentions this before you need it – they don’t want to empower you – but trust me, everyone raises it afterwards as if to thumb their nose at you. Information you may require mentioning you, they will withhold making out it is about your relative’s health and not you, even when you have in your hands an email badmouthing you, and you want the attachment referenced.

    I have to say that Social Services in Adult Social Care have behaved disgracefully towards my family, quite brazenly. They are quite unaccountable. To complain, you complain to… wait for it… the council’s Social Services. That is your first port of call, apparently. They can then take up to six months to decide whether they are guilty or not, hmm, how do you think that will go? They can use that time to ask the care home to fit you up, go on a fishing expedition against you… oh, and by the way, even then, you can only issue the complaint ONCE they have finished with you and the case is closed. So therefore they have every reason to string it out and not close it! One body you can report them to however is the Nurse and Midwifery Council. But it takes them up to a year to open an investigation… You might also get your MP to bypass the Social Services self review and take it straight to the Ombudsman if you have them on side.

    Do not let your relative near a care home unless you have PoA in Health and Welfare and also Finance. Do not think if you are self-funded you’ll be okay! That is the worst situation; Social services want your money to prop up their care homes. The care homes can nearly kill your relative, but SS can prevent you getting them back to the family home to bleed you dry. It is a racket, so be warned.

  19. shel 4 years ago

    Urgent help, advice required.

    I have had years of my mother in and out of various residential homes that have not given her proper care, and she ends up in hospital. This time I was not going to allow her to be harassed, intimidated and blackmailed or me have threats about safeguarding made against me. I am the only person who has really picked up the pieces after the system, and family have not taken proper care of her. I’m in a traumatic place at the minute with no one helping me. I have called all the numbers where the system says they can do this, that etc etc but they just fob me off to another number. Sites with gov.uk are funded by the government and are based. They might help a little but in the end the system is geared to cut back and cut back, and people are dying and suffering immensely, including myself, when my doctor said ‘he can’t help me because of funding’. I could write pages and pages of the hell my mother has gone through with this system, and me battling to make sure she gets proper care. Now they are trying to twist and distort everything and threaten me with safeguarding, saying I’m causing an obstruction to stop her being discharged from hospital. But all I’m asking is that she does not end up back in hospital. As I write this tears are flowing from my eyes because I feel they might just have drained me and worn me out, but my mother will die if I don’t keep trying to get the right aftercare. Can anyone help, or has anyone been in the same position of them trying to cut you off, so their job will be easier to do what they want with your relative. I hope someone can give me some advice.

    • Angela Sherman 4 years ago

      Shel – if you can post a specific question it’ll be easier for others to share advice with you.

  20. Angela Fox 4 years ago

    Thank you Angela for your reply. I have now requested a best interests meeting be arranged and hope this is sooner rather than later. As you say the care home may not be impartial and I believe this to be true. They have previously said that my dad is one of their “best” residents and is no trouble so is easy for them to care for. One of the nurses said to my mum that she would only be entitled to two 15 minute social care visits per day to help with dad and “what would she do during the night?”. They are trying their best to deter her from taking him home. Also he has Continuing Healthcare and when we initially enquired about the price of care for him they quoted £630 but once he was discharged from hospital with CHC the price went up to £945 which I think is questionable. We are keeping our fingers crossed that we can get him home soon.

  21. Sandra Parsons 4 years ago

    My mum has now been refused for a referral to a local community hospital near to us for rehab. It’s a post code lottery so she may have to go to a hospital 30 miles away from her family and friends which means a 60mile round trip for us. I am now trying as from next week to see if I can through our local Clinical Commissioning Group (CCG) to persuade them to fund her rehab locally. I just feel for other families who have their elderly family members treated so badly, the hospitals need the beds I know but why do they not talk to each other and try and compromise where care is concerned for the benefit of the patient and families then the outcome would be better.

    • Angela Sherman 4 years ago

      I think many families would agree with you, Sandra.

  22. Angela Fox 4 years ago

    My 83 year dad has Lewy Body dementia, Parkinsons disease and cancer. After a fall at home he was admitted to hospital and found to have a UTI. He was given 3 months to live. Two months later he was admitted to a psychiatric unit and sectioned. We were told he needed to go into a nursing home with EMI unit. He hasContinuing Health Care. Since being sectioned, his meds have been balanced out and he seems better than he has been for a long time. After much pressure from the hospital, we found him a nursing home and he has been there for four months. However, he is very unhappy there and is nowhere near as badly affected as some of the other residents and we feel he is in the wrong place. My mum wants to take him home and care for him herself and has told the home this. They have said it’s not a good idea and will be very difficult to arrange. I think they are trying to frighten her. She is desperately worried that he is going to die in there and drives 40 miles every day to visit him. I am worried about both of my parents and am wondering what the legal position is regarding taking my dad home. Sadly my mum doesn’t have Power of Attorney. Any advice would be greatly appreciated.

    • Angela Sherman 4 years ago

      Angela – The care home may not be entirely impartial in their statement about things being difficult to arrange. They may be right, but what you’re suggesting is certainly possible; the primary consideration is the safety of your dad. It’s likely there would need to be a best interests meeting. Any decision made at a best interests meeting must be made in consultation with others who are close to the person being discussed. The decision maker at a best interests meeting has a duty to take into account the views of all relevant parties, and this could include family members, parents, carers, power of attorney or deputy, and any professional who can contribute to the outcome. You can read more about best interest meetings in one of the later comments by Bernie Crean under the following article: http://caretobedifferent.co.uk/paying-for-care-between-hospital-discharge-and-funding-decision/ Also, if your dad wasn’t assessed for Continuing Healthcare funding before being discharged from hospital, this should be done. Continuing Healthcare funding is available for care at home.

  23. Sandra Parsons 4 years ago

    I would like to say how helpful this website has been to me. My 79yr old mum has been in hospital now for 7 weeks after a traumatic sepsis of a perforated bowel 3 critical care admissions due to complications of her first surgery. The ward now want to start the discharge process she cannot walk, still has a catheter and obviously a Stoma. Fortunately I now have power of attorney for her health. I am fighting now to get her some rehabilitation and respite care locally as they want to move her to another hospital miles away from her family. I have told the staff that I wish to be at any conversations about her discharge and checked the discharge form today only to find the wrong address and the NHS continuing funding box not ticked. This has now been corrected and the form re faxed. I have told the staff that I will be fighting for my mum to get the correct hospital for her rehab and if I don’t I will be takin the issue higher. Without this web site I would never have known the correct procedure and it’s made me realise how unfortunate it is for some elderly people that have no one to fight for them.

    • Angela Sherman 4 years ago

      Thank you for your kind words, Sandra. I’m glad the website is helpful. I think you’re right that elderly people without family to fight for them are in a very vulnerable position.

  24. Ella 4 years ago

    I agree hospitals can’t cope with people who dont have capacity. I am going through hell with my mother who has dementia. Asked to be at meetings but ignored and told of outcome of meeting for stage 1 Continuing Healthcare (CHC) funding.
    Mum has been in 10 weeks after a fall with no injuries!
    Social worker is the only one telling me information.
    Mum aged 90 has had 4 UTIs and it has been me who alerted staff of this?
    Hospital care of the elderly is bad and worse if they have dementia.

    • Angela Sherman 4 years ago

      I think many families would agree with you, Ella.

    • Dee Jolliffe 2 years ago

      I totally agree with you re hospital staff not knowing how to deal with dementia patients. When my husband is admitted I’m there from 1pm – 8pm every day as that way I know he’s getting help with food, drinking and the toilet. I have even been called in at 1am because they couldn’t get him to keep his oxygen on. I left at 8pm that night! He wouldn’t get his teeth cleaned unless I did it. A quick wipe with the equivalent of a wet wipe is what they call a wash.

  25. Sarah.L 4 years ago

    Hi. I’m desperate for advice. I feel like I’m at a dead end. Not sure who to turn to. I was forced out of a care home, where I wanted to stay at. The local council refused to let me stay there, where I was at my happiest. Yet they don’t seem to mind finding me Supported-living accommodation, and are funding it. My whole health has deteriorated. I knew this would happen, if my local council moved me out of the care home. No matter how many review meetings I had, I just getting told different reasons, as to why I couldn’t carry on staying there. The most pathetic reason was “Most of the others living here, are older than you, so you won’t want that”. Who are they to tell me this? How ironic. I told the care home manager, that I wanted to stay, and the home owner, and they said I could stay.

  26. Anya 5 years ago

    I recently was in hospital, I am not elderly, I’m 35yrs old, however after a collapse I was taken by ambulance to A&E, my ECG showed I had a right bundle heart block but not sure if definitely why I collapsed, 2 more ECGs confirms same, after waiting in a hallway on ambulance bed for over half an hour I was taken to A&E ward where I waited 4hours to be seen, they took bloods, did one more ECG and my blood pressure which was low, When I tried to get up for loo, I couldn’t walk, legs shaky wobbly, Consultant said I could go hone, my brother complained and said I have 3 children, stairs to my home and she cant walk, after a bit of back and forth with consultant he said I must be able to walk sufficiently before discharge. My family left as obvious I couldn’t walk. I stayed in hospital overnight and was there I total 14-15 hours, in this time I had nothing to eat and was scared to drink because i couldn’t get to the loo, I was given hourly blood pressure checks, hospital beds are very uncomfortable and i had no pillow. In the morning my kids called me, my youngest said mummy i want a huggy and that was it, determination, when a consultant came she asked me to walk, I stood from bed, legs shaking I took 5-6 difficult steps, I was asked to do pigeon steps which I did two and the struggle brought me to tears, after that I was told I could leave and I couldn’t wait to see my kids, but I had no after care and still struggle to walk and my discharge said collapse, wobbly legs NAD, after i was discharged i was wheeled in a wheelchair to a quiet room and left, no one came to check on me in the few hours i waited to be collected by my mum who cannot push me in a wheelchair! I did feel that hospital did not take someone’s ability to walk seriously, i am now waiting for specialist referrals to neurology with very long waiting times, what happens in-between from hospital and waiting? My brother has now gone home(different country) my mums not to well and my dad works. Should Drs and hospitals not have responsibility to ensure care of patients or responsibility for the care of dependants of a patient? I still am struggling to walk. The discharge letter to G.P didnt mention my heart block, I had had no scans to determine why i couldn’t walk. Why would a hospital not make full examination into it before discharge? Thanks for reading ANYA.

    • Angela Sherman 5 years ago

      That sounds like an awful experience, Anya. The hospital has a duty of care towards you and should not discharge you without a care plan and ongoing care in place.

  27. Alexandrina 5 years ago

    Brother- in- law waiting to be discharged from hospital into a residential home because of his incapacity. He is a bit confused at times because of a fall and has been in hospital from Dec and throughout the past year due to a slight stroke and broken hip. My husband and his family were not told of this and only found out by chance. My husband had been trying to get in touch with his brother but could never get him either by phone or visiting his house (due to his way of life). When the family were told of their brother they immediately went to the hospital. It seems that friends of his told the hospital that he did not have any relatives, even though they knew. They had been looking after D’s affairs. We went to D’s house to get some clothes for him and discovered that while D was in hospital money was taken every day from his bank account. The friends also had themselves as next of kin. My husband asked for bank card and keys to the house but they said bank card got lost, so my husband went to bank and stopped it. Then the hospital phoned care manager and told him that people were at D’s bedside getting him to sign forms for power of attorney. A meeting with care manager, hospital staff, consultant and my husband took place to confirm that D could not look after himself and therefore had to go into care. D agreed and was quite happy about it, but When his so called friends visit him it is a different story he says he does not know if he is making the right choice. Family not happy with friends, husband and family not happy with care manager because she wants friends to be involved and to keep them updated, She wants to call a meeting with friends (father and son) and D to make sure D is making right choice. The family are absolutely fuming and want their brother to be looked after properly. The friends told social services that they had looked after him for years which is a load of rubbish. D has only got state pension and no other money apart from carers allowance, which we think was paid to the friends.

    • Angela Sherman 5 years ago

      Alexandrina – the issues you raise regarding the power of attorney need to be dealt with by the Court of Protection. You may also need to contact the local authority in relation to your other concerns.

  28. Dana 5 years ago

    My father had heart failure end stage he was discharged at 12.30 pm we had to book an ambulance he was home in approx 35 mins from start to finish , even the ambulance staff said they had never know someone to be discharged as quick. He was still in pain too weak to walk and still was not eating much. There was no OT home assessment so he was left to be cared for by my mother who is half blind and mobility problems and disabled sister. He was given a zimmer he couldn’t even walk. The hospital phoned to say they had forgotten to give him his medication and then sent it home in a taxi. He had no urine bottle or Kamode chair. He lasted until lunchtime he next day when his daughters phoned for an ambulance to take him to A&E. It turns out a urine test was done 02/0216 but they didn’t wait for the results and sent him home 0/02/16. When in the A&E the doctor got the results – he had a severe urine infection and had multiple organ failure. His discharge notes said he had made a full and speedy recovery; he died 15/02/16.

    • Angela Sherman 5 years ago

      That sounds truly awful, Dana. I’m so sad to read what happened to your father. This sounds like negligence on the part of the hospital, and it may be a case you want to pursue once you feel able. I imagine you may already have considered that, though.

  29. June Kirk 5 years ago

    Thank you Angela, I had a meeting, and a care plan is now in place to get my husband home,
    I now have friends on board to guide me ,and assist me , and are doing all they can to make sure my husband has all he needs to be comfortable at home. Thank you. June.

  30. JUne kirk 5 years ago

    I need to get my husband home. He is not getting the care he needs. If I was not visiting him for six hours a day, feeding him. and giving him drinks, I am sure he would no longer be on this earth. He has vascular dementia, he wants to come home, he hates wearing a catheter and incontinence pants, he is depressed and wants to come with me when I have to leave him. I am sure he would be happier at home. I do not get much joy from the doctors; when I ask a question each one has to read his notes before they can answer me. Where do I start to get the ball rolling and get my husband for 59 years home where he belongs. I was a care assistant for ten years so I know what caring involves.

    • Angela Sherman 5 years ago

      That sounds very distressing, June. Do you have power of attorney? It sounds as though there may need to be a Best Interests meeting to look at where your husband would be cared for best – and that could well be at home.

  31. Ade 5 years ago

    Hello, I’m wondering if anyone can advise me on the situation with my 86 year old mum. She is in an EMI care home which I have been quite happy with. She is funded through the council and I pay a monthly top up. However, a very recent incident at the care home – for which the care home has admitted full fault – has left my mother hospitalised and currently unable to walk as a result of the incident which involved possibly various falls. Prior to her admission she had never been in hospital and was extremely physically fit and healthy for her age, walked unaided, could go up and down stairs, go for walks in the town centre with me, etc. People always commented on how great her mobility was. Mum’s GP told me today that with dementia, she may not get back to her previous level of fitness or be able to walk unaided, which will greatly affect her quality of life and the time we spend together. She is almost ready to be discharged but is unable to walk as yet. I do not imagine that the NHS will provide much in the way of physiotherapy but mum’s GP thinks she may need intensive physio. Can anyone advise on where I stand with this situation? Can anyone advise on where I stand with this situation? Would she be entitled to sufficient physiotherapy and rehabilitation to get her back to where she was, or as close as possible? And who would be responsible for funding this? The care home seems to be doing all the right things regarding the incident and I am happy for her to go back there. But clearly she is going back there as a different person, with completely different care needs, and her quality of life greatly affected. I want to push for as much help as I can get for mum, but I am finding the whole system extremely daunting and confusing. Any advice from anyone who has been in a similar situation would be hugely appreciated.

  32. Anne 5 years ago

    My mother is currently being held in hospital. She is not incontinent but they are keeping her from going to the toilet, and she has a catheter and incontinence pants on. She is 95 and doesn’t understand why they won’t let her go to the toilet. She is denied a drink and is given “fluids with thickener added”. I had to go and ask for a mouth care kit to wet her mouth. She was admitted after a fall and she had an infection. The day before she was taken ill she was eating chicken and chips and now all of a sudden she has an issue with swallowing. Her mouth is dry, her lips are dry and her throat is “glued”. All the medics are doing is covering their own backs. These elderly patients NEED fluids and all they want is a drink. Trouble is there aren’t any staff to supervise then while they’re drinking!!! If her throat is “glued” she can’t swallow, can she? Where are the human rights? Oh yes, they slap a Deprivation of Liberty on the elderly so nobody has any say.

    • Angela Sherman 5 years ago

      This is sadly a problem many families report, Anne – and a serious one, given the vital importance of fluids.

  33. June 5 years ago

    My mum has been in hospital since before Christmas. She is in end stage dementia and has nursing needs – immobile – can’t weight bear, can’t eat or drink by herself, lack of cognitive skills, doubly incontinent, lacks capability. She has a sacral pressure sore. She has twice been assessed as not being eligible for CHC by the NHS. On the second occasion, she actually met the criteria required, but was refused eligibility at the panel meeting. Social services have agreed to take on funding for her care and we have been sent a list of homes. Unfortunately only one of the homes so far has agreed to take mum – the others say her nursing needs are too great. Can anyone offer any advice? We are under pressure to find a placement for her and the only nursing home to say yes has an appalling CQC review (as recently as Sept 2015). Is there anything we can do?

  34. Fiona 5 years ago

    Hi, I am just reading this because my 88 year old mother has been discharged from hospital after a fall, and despite my husband and I asking for one, there is no care plan for her. She lives alone up north and will return there tomorrow. Her GP said it is up to the hospital to co ordinate with district nurses and social services but the hospital said they could only do this if she lived in their area – which I believe is rubbish!
    My mother wanted to get out of hospital and didn’t want me to make a fuss. The hospital said she has full mental capacity which is true but told me she insisted on leaving and said she didn’t need any care. My mother says she did not say that. The physio said she can walk with a Zimmer frame that they have given her and she passed the stair test so they said she would not qualify for help anyway.
    I asked for intermediate care but they just very pleasantly fobbed me and my husband off. A Red Cross man came to see her in hospital and gave my mother some phone numbers. He said we could call social services in her area if we wanted. But shouldn’t the hospital do that? When she was admitted the first consultant promised that they would liaise with her GP and local authority but now nothing…She also has incontinence issues that I told them about but there has been no assessment of how to manage that…should there be?
    This is all new to me – my mother’s first incident as it were but I feel we are not being treated right.
    What action can I take with the hospital? Any advice welcome. Thanks.

    • Angela Sherman 5 years ago

      No one should be discharged from hospital without an ongoing care plan in place – otherwise there could be a serious safeguarding issue. Also, if your mother needs ongoing full time care she should have been assessed for NHS Continuing Healthcare funding before she was discharged. We hear many accounts from families of discharge procedure being chaotic and the correct assessments to happening. It can sometimes seem as though one hand doesn’t have the first clue what the other is doing. You can get the Continuing Healthcare process started now, if relevant. This may help: http://caretobedifferent.co.uk/getting-the-nhs-continuing-healthcare-assessment-process-started/

  35. lyn 5 years ago

    Hello. We are at the begining of this journey with my mum. She is currently in hospital after collapsing at home 8 days ago. We have been getting phone calls from the OT and other teams at the hospital saying each time that “she will be going home tomorrow”. Each time we have told them that we are not happy. She was fine 2 weeks ago, looking after herself, shopping etc and now cannot stand unaided. Instead of being interested about why she collapsed in the first place they are more concerned about getting her home. She has also been confused and has lost short term memory, even within one conversation. However, the ward staff constantly tell us she is not confused.
    Her home is not suitable–she has a toilet downstairs but bathroom and bedrooms are upstairs. The stairs are steep and narrow but apparently, just telling her not to go up them will stop her trying to do just that, even tho she cannot remember what day it is.
    I have been at the mercy of social services before and left looking after a relative with no help and I will not do it again.
    My brother and I plan just to say we are not helping—can we still say we want to be invited to meetings etc? Or will we be told that as we are not her carers (even tho they keep referring to us as such)? I love my mum but just cannot care for her full time from 40 miles away. Thanks for any help.

    • Angela Sherman 5 years ago

      You are under no obligation to become carers for your mum. Whatever care is put in place, it must be safe, and you can still act as your mum’s representative. Do you have power of attorney? If she needs a lot of care, you may want to get her assessed for NHS Continuing Healthcare. This funding is available for people in care homes and also in their own homes, and there is an assessment process to go through.

  36. Tina 5 years ago

    Hi Amy, I do hope things work out for you. We are going through a very similar thing with my dad. He has been in hospital for 4 weeks now mum has been his carer up till now and has managed vary well, but now social services is saying he has to go in to a home. They asked us to look at it over the weekend. It’s disgusting you wouldn’t leave a dog there. I will be phoning social services in the morning because as far as we can tell dad is bedridden. They say the reason he cannot come home is because they will need a hoist to move him. HELLO he is not being moved now. My argument is why can he not come home with a care package in place. It’s all wrong and very stressfull isn’t it Amy so I know how you and your family are feeling good luck hope it all works out for you. x

    • Angela Sherman 5 years ago

      That sounds like a very difficult and distressing situation, Tina.

  37. Amy Machell 5 years ago

    Hi I wondered if anyone could give us any advice. My Grandmother was admitted to hospital 9 weeks ago due to having a fall at home and losing her mobility. She was diagnosed with dementia a few months ago and after her first couple of weeks on the rehabilitation ward we had a family meeting where we were told that she is definitely going home as going from one care visit a day straight into a care home was too extreme and was also unfair as my grandmother is extremely against the idea of a carehome! A few weeks down the line my grandmother still wasn’t mobilizing properly but the numerous meetings we’d been promised by the social worker hadn’t happened, we had another family meeting where we were told that she no longer has the mental capacity to go home (even though one of the memory tests was undertaken whilst we were there and she answered every question correctly, especially as she is hard of hearing and her eyesight is quite poor). We were told she will definitely be going into a carehome even though we stressed how unhappy she would be, but they were reluctant to listen to us and we weren’t given a say in the decision even though we’re her family and we know her! We were told by the social worker that she will not under any circumstances be signing any documents to send her home as if she falls again at home it’ll be the social worker’s signature on the back of the paper and it’ll be her fault is we were to sue (which we wouldn’t). Last week she finally began mobilising properly and was walking and attending social groups on the ward which is miraculous as it has taken 9 weeks for her to build up her trust with the Physio and actually try to motivate herself to get moving again (she’s very stubborn also so it was difficult to get her to come to the realization that if she doesn’t get walking like she was at home then she may not be going home) . Her Dementia is in our opinion no worse than it was whilst she was at home and she still has the capacity to tell us how she wants to go home now and her communication with us is also the same as it was when she was at home. The occupational therapist visited her home last week and concluded that her home is suitable for her to be micro-managed however later in the day after receiving a phonecall from the social worker she was completely unaware that her home assessment had taken place and was still completely adamant that she was going into a carehome. Later that week the occupational therapist rang to inform us that she had now decided that her home was not suitable and that from their judgement she will not be going home (which I’m sure was influenced by the social worker as it is incredibly strange how her opinion would change so suddenly). Today I rang the social worker as I wanted to talk about nans condition as the social worker did not attend our family meeting on friday, she was incredibly rude and after some persuasion gave us the name of a care home of which she wanted us to go and visit but as my Mum knows of the home and has had patients there so knows of the way it is poorly run such as its incapable staff and the low standards of care such as the strong smell of urine, and how its residents are actually in the advanced stages of dementia, which we are completely against. We seek help in knowing where we stand in regards to discharging her from hospital ourselves and arranging private home care as we believe sending her into a carehome will actually make her condition rapidly go down hill and will possibly make her give up. Any advice on what to would be helpful as we feel she is being wrongly pushed into a carehome even though she still has mental capacity and there is nothing wrong with her medically. Are we able to discharge her ourselves or is there a legal barrier of which we face? thankyou for any help

    • Angela Sherman 5 years ago

      Amy – It sounds as though one hand does’t know what the other is doing – and, of greater concern, that there are other agendas at play, and not necessarily in the interests of your grandmother. A few questions: Does anyone hold a power of attorney? Has there been a formal Mental Capacity Assessment? (If there has, there’s should be the appropriate paperwork.) Has there been a formal Best Interests meeting? And has she been assessed for NHS Continuing Healthcare?

    • Ade 5 years ago

      Amy, if your Nan’s care home will be funded through the council, and even if it isn’t, do make sure you get a full and proper Assessment of Needs from the council for your Nan. Make sure you are fully involved in the process and, as you know your Nan the best, make sure that the assessment covers all of her needs. There is some very good free advice available on the Internet about needs assessments from organisations like Independent Age and Age UK.

  38. Joan 5 years ago

    Thanks to your book we were able to challenge the way in which the checklist for my father was done and the CCG has agreed to carry out a full assessment. Dad is in a psychiatric unit for the elderly. He’s been stablised so could be discharged into a suitable care home. We’ve now found one and been offered a place but the continuing care assessment hasn’t yet been completed. We now have a dilemma as If we don’t say yes now we will lose the place and it is has proved difficult to find one that will cater specifically for his needs. Most didn’t want to know due to his history of mental health difficulties. I’m not clear who would be responsible for paying his fees whilst the DST is completed and a decision made. We’ve been told by the social worker and unit manager he will have to pay his fees pending the outcome. Any advice would be welcome.

  39. Panna 5 years ago

    My uncle is in hospital and has had the CHC assessment and didn’t get it and we are disputing the decision. They have said he is ready to be discharged to EMI Nursing. They have said we should decide on a home and pay for now and a new CHC be done when he is in a home (rather than continue with the disputed CHC assessment) and if we get it they would backdate payments. My question is, if a decision is in dispute whilst the patient is still in hospital does the NHS retain responsibility until full resolution ie after IRP/ombudsman if we think we should go that far or legally do we have to pay before it is resolved (he would be self funding)? What would happen if we didn’t win eventually? Would they bill us for the fees paid by the NHS during the dispute?

  40. cas.snow 6 years ago

    I wonder if you could offer me advice. My nan is being put into a nursing home from hospital shes suffering with kidney failure and Alzheimers. Her husband (my grandfather) as her next of kin has requested the home be close to him as he is also ill of health but would like to visit everyday. Anyhow, other family members (who have been estranged for a couple of years) decided to arrange a meeting with the social worker (behind my grandads back) to get my nan in a nursing home near them almost 65miles away from my grandad. They have been given information on my nans state of health, etc and access to meetings regarding the next steps for her without my grandads permission or knowledge. The whole experience has become extremely distressing for my grandad who despite being in ill health himself is also very concerned for his wife’s wellbeing, im not sure if you can offer me advice but any input or links to gain info would be appreciated. Thanks

    • Angela 6 years ago

      This sounds like a serious breach of confidentiality if the other relatives don’t have power of attorney or other form of authority to impose their wishes or access information. It sounds as though there should at the very least have been a Best Interests meeting. Some of the key issues are: a) Who has power of attorney? b) Why have the other relatives wishes been granted – and on what authority? c) Has there been a financial motive on the part of the social worker in placing your nan in that particular care home? d) Why has there been no best interests meeting? These are some of the questions you could ask the Head of Adult Care at the local authority.

  41. Chris-G 6 years ago

    Very familiar, particularly with the attempts (in our case) to shout us down at meetings.

    If your husband is still at home I wonder if you have the strength to go public with this. Perhaps involve the TV news if you can. You sound angry enough and anger (when controlled) is an excellent source of motivation.

    Good luck with it all.

  42. karen 6 years ago

    My husband had a major right sided stroke on the Friday 23rd May 2014 at 6.15pm, he was taken to a hospital 25 miles away from home as the local hospital acute stroke unit closes at 5.pm on Friday – 9am Monday morning. He was admitted with total loss of function from left side of his face to the tip of his left foot and delirium. He was in this hospital for 3 weeks during this time, he had 2 major gastric bleeds requiring admission on to the critical care unit, he was left sided hemiplegic, double incontinent, tube fed, no swallow and highly aggressive to the extent that he required medication. During this time I was told that my husband was very unlikely to be mobile again and would require and fit into the category of “Continuing Care” and to go and find myself and get a life for me, he would need nursing care for the rest of his life in a nursing home. 11th June 2014 he was transferred to the local acute stroke unit. From the very 1st day we were told that he would be coming home with a social care package, he would not qualify for “continuing care” that was only available for end of life care. Today he is still on the Acute Stroke Unit, he is left side hemiplegic, double incontinent, left side dysphagia, vascular dementia resulting from chronic multiple left brain TIA’s, highly confused, he can only hold and understand simple conversations, global cerebral atrophy, his aggression has increased significantly. His consultant stated that the care he needed would have to be provided in a nursing home and that he would never be coming home again. At no time in the last 3 months have we been involved in any meetings at the hospital, no one has invited me to any formal meetings on my husbands further prognosis or care. I have spoken to the consultant over the phone a couple of times who has at last advised me that my husband is at his peak, we have to accept what he is now and will not get any better but deteriorate in the months/yrs to come, he has a life limiting prognosis. The nursing care at best we can say has been adequate, numerous falls from the chair he is forced to sit in every morning, and falls from his bed to get onto the various machines they use to get him to the bathroom or into his chair. None of these falls have been recorded, I have found out about them from various people visiting their relatives but also by questioning my husband when I see fresh bruises on his arms, chest and legs. Over the last 2 months Social Services have been involved doing numerous assessments and stating that he would be coming home on a care package which provided 4 x 1/2hour x 2 people care services per day. I might add that they were discussing this with him and not me or together, I was treated as if i didnt exist. At no time have they ever met or discussed with me anything to do with his care. He has had 3 nursing assessments done over the last 6 weeks ranging from marked so low that anyone not knowing him would assume that he was fit for work next week, the last nursing assessment done a month ago was high enough to kick in the DST process. What a farce that turned out to be, for 40 mins before the DST meeting the nurse co-ordinator was in private conversation with the Social Services, the meeting started off with me being asked if my husband dealt with his own finances ??? I knew we were on a downward spiral before the DST had started, anyway I challenged the first 2 categories with the help of the consultant (he had come to the DST because he knew they would try and put it to SS) where the marks were Severe in both behaviour and Cognition but they were marked down to High from there on it went down hill big time to moderate or low even his left sided dysphagia was marked low. Every time I opposed the decisions I was told in no uncertain terms that this was not the time or place to be discussing this further it needed to be taken up with the ward staff at a later date that we were dealing with him as he is today, not yesterday or tomorrow. Consequently I was told we didnt qualify for fully funded care and was directly passed to the Social Workers in the meeting who stated that my husband would be coming home on a community care package and ” who owns the house” I left the room at this, my anger at the injustice we had just been dealt left a bitter taste in my mouth. We have since found out that he has been awarded the part funded nursing care of £109 per week but this I am led to believe is only paid if he goes into a nursing/care home. Since this meeting I have had no further discussions with the Social Workers until last wednesday when I was summoned to the hospital from a meeting with them. In this meeting I was told that my husband did not qualify for SS funding for a nursing home that he would be coming home with a care package and if I didnt want to care for him then I was to sell our home to fund his care. I was also informed by the SS that he had done a mental health assessment on my husband and in his opinion he had full cognition to can make his own mind up about his care stating that the Consultant, Psychiatry and Psychcology and the community psychiatric teams assessment on my husbands cognition were incorrect. I also tried to tell them that I had already been my husbands full time carer for the last 8 yrs and felt that I could no longer cope taking on the extra caring needs that would require 22 hrs of committed nursing care that he needed again this was irrelevant. During this meeting we were treated with arrogance, irrelevance and aggression. Anything that myself or my daughter said was shouted over, we were not allowed to finish a sentence before we were shut up, this happened over and over again until again we were forced to leave again for self preservation. At no time has the SS ever discussed with me my husbands care plan, I have had no carers assessment done. Our home hasnt been assessed for suitability for the amount of equipment that he will need just to function on a daily basis. I have since put in and official complaint to the County Council involved reporting the 2 SS workers and also asking for them to be replaced. We dont have a large property a small semi detached with 2 downstairs rooms comprising of a lounge/hallway/stairs and kitchen, the stairs arent wide enough to fit a stair lift plus we would need 2 hoists to accommodate this, so my husband would never be able to go upstairs to the bathroom or bedrooms, ( he is to have bed baths for the rest of his life ) the only place would be to convert the lounge into a disabled room with no privacy or dignity again this is irrelevant. Today he has been measured for a self propelling wheelchair ?? and a hoist to bring home. I have put in an appeal against the DST decision and I also have applied and waiting for the final papers for the LPA for health and finances this is being rubber stamped 24th September. I am at my wits end, I know I cant provide the full time care that he requires, coupled together with the endless aggression which is directed solely to myself on a daily basis when I visit him in hospital. I also feel extremely angry at the SS’s assumption that I am to be his carer with no say in the matter, or perhaps they have ruled me out of the equation, then perhaps I am to view myself as an interloper in my own home with no say of the daily running, who comes and goes with no security, or any say of who comes through the door. I wonder what the House Insurance company would say when I have to admit any tom dick or harry.

    • Angela 6 years ago

      What a terrible catalogue of incompetence, misconduct and lack of care on the part of the so-called ‘professionals’ involved, Karen. And, I imagine, at a time that so difficult for you anyway.

  43. Marion 6 years ago

    I find it unbelievable that this article is on a website which can be widely accessed – clearly the opening statement sets the tone. This sweeping statement re: elderly people often being forced out of hospital to care homes or home before they are ready to – does a huge disservice to people like me and my team who are passionate about our roles within the Integrated discharge team – nurses, therapists, social workers, etc. You make the assumption that a hospital environment is the right environment for a care needs assessment. You make a scant comment about everyone having a right to be considered for NHS continuing Healthcare without referring the reader to where they can find out more – eligibility could easily be misconstrued – as a result of your article – as a given by many who have themselves, or who care for someone who has, a chronic health condition. I agree that carers should be given every opportunity to sit in on some assessments but is it not feasible or appropriate for them to be (mis)led to believe they can reasonably be present for all. Nor is it appropriate to encourage people to deliberately hide information (POA issue) when the principles of good discharge planning relies on open, honest and transparent conversations early in the patient journey between hospital staff, patients and carers. You also assume that staff do not or will not follow policy or process just because a patient or relative appears knowledgeable or disputes a multidisciplinary decision. You make the assumption that good care is not provided/ cannot be provided in a discharge lounge facility – on what grounds? I wish I could say that discharge processes are perfect. I believe that patients and carers should absolutely have an expectation of what to expect from a hospital in terms of our responsibility to them. Equally they should be advised of their responsibilities during their participation in the process. Patients should be aware that of course hospitals have a duty of care and consider the acutely sick patients to whom we need to provide care.
    This article is unhelpful and seems to seek to set patients/carers against health and social care staff from the outset – at a time when it is imperative everyone is working together.

    • Angela 6 years ago

      All the information in our articles and on our website is based on the personal experience of the hundreds of families who contact us every year and who have faced the same problems we highlight. Families being hounded to remove older relatives from hospital, questions being asked about property and savings before it is even clear what ongoing care a person needs, people left sitting in a chair without proper clothing, food or water waiting to be discharged when the family has not even been informed… These are all real things that happen. It’s good to hear that you and your team provide good care. Sadly this is often not the case, and that is why we provide the information we do. Every website is entitled to write about the experience of its followers/contributors. It is also the experience of many families that once an older person is discharged from hospital without a funding assessment, it then takes months for them to be properly assessed. In the meantime the family is hounded for money despite no decision having actually been made about who is responsible for paying for care. Many Continuing Healthcare assessments take place in hospital, where they should be. The family member(s) holding a power of attorney and/or the next of kin need to be involved in the assessment process, and yet we hear of many cases where families are kept in the dark about the process, and assessments are carried out and decisions made behind their backs – the direct opposite of the transparency the National Framework so clearly stipulates. Sadly, it is the experience of many families that if they are not present at funding assessments, funding is unlikely to be awarded – even if the person is eligible. I can understand that this may not be what many dedicated and conscientious health and social care employees want to hear about the system they are working in, but the evidence is borne out in the harrowing stories we receive every single day. On our website we make it clear that there is an assessment process to go through for Continuing Healthcare, and that there are eligibility criteria to be met, and we include links to the assessment forms on our website and in our guides. I’m sure everyone (staff and families) would welcome a situation where professionals and families alike did work together in an open and transparent way for the benefit of the patient, but this simply does not happen in many cases – which is why we provide the information we do.

    • mike 5 years ago

      Unfortunately, the concerns in other posts are all too accurate and prevalent as my mum has sadly experienced.

    • alice 5 years ago

      In same position with elderly parent. Due discharge from hospital ..no after care, lives in a split level home .. failed stair test, cannot walk or stand without help.. double incontinence.. unable to get out of house if fire or anything ..recently had fall because of stairs.. unable to cook, clean herself or even make a cup of tea… the care services are an absolute disgrace ..

    • caroline 4 years ago

      Whilst it’s always good to have a balancing view, sadly we too have experienced shocking corner cutting in order to shift the problem parent asap. Following a collapse, father admitted into hospital under a Deprivation of Liberty Safeguard (DoLS) as he was severly confused. Within 3 days we were nofied that we needed to look at EMI homes for him as their recomndation was long term EMI residency. This view was based on a capacity assessment only, (the one they’d applied Dols under). He has no diagnosis of any long term disease, they have not investigated the reason for his collapse, and we are at a brickwall in attempting to get him fully assessed or indeed even seen by a psychiatrist. (Capacity assessmnt done by psych nurse). We are shocked and seemingly powerless that his life is about to be changed forever and the NHS view is they will do all the assessments he needs when in a care home. To discharge him with no diagnosis, no care or even any attempt at treatment it utterly outrageous. And yes, he does have to pay for the priviledge as without a diagnosis or needs identification plan done, he is indeed a ‘social’ care problem. This is April 2016 and all I can tell has happened with the introduction of Dols, is that his rights have been utterly eroded as this couldn’t happen under the mental health act and it indeed enables NHS staff to fail to provide treatment, legitimately. So please, dont tell me this doesn’t happen, it’s happening today and I’m sure we’re not alone. The only element we can assume has caused this situation to come about is his age. If you are over 70, and experience a period of disorientation, there are no safeguards whatsoever to stop you being long term restrained in a social care environment, and losing your home in the process. Shocking shocking shocking.

    • Chris Lane 4 years ago

      Sadly , I wish i could also find the above details “unbelievable” … However, sadly from personal experience they are highlighting an existing escalating problem. I won’t go into precise details, but my mother was victim to some very questionable actions by NHS/Social Services on her discharge late 2015.. These ranged from illegal practice to inhuman treatment of an 83 year old woman with extreme mixed dementia. The result of mum being discharged while under the “care” of the NHS/Social Services was devastating for Mum and all involved …Before & during the procedure family concerns were ignored and brushed aside , culminating in “Eviction” blackmail .. and yes ..that was a word used by a representative of Social Services in a phone conversation on the 23rd of December 2015 pressurising me into finding a home for my mum. …I have details of the person involved.
      If you do your home work and look into this problem with some empathy to the people writing, you will find whats happening here is the tip of an iceberg…. vulnerable people, and by that I mean the ones that are generally caring for their parents/husbands/ wife’s and are having to learn on the back foot how the system really works!

    • Amy 4 years ago

      Hi Marion – I too work in the NHS and have a father days from death, acutely ill with cancer (spine shattered by tumours). The thing is there are discharge teams who lie to families and mislead or go behind their backs to free up a bed. My father is too ill and with pain too complex to move to a nursing home – medical team says he will die in next couple of days – yet the discharge team is ignoring all that, ignoring our POAs and sneaking around behind our backs.
      In work I have seen a patient die in a discharge lounge and colleague in discharge team says they wait all day for transport. Another case saw a 90 year old discharged at night to a cold empty house with no food – dead next morning. Discharge process – lots of pressure, good on theory but the real danger is when you believe your own hype and utopia vision. Reality is scary and most of all sad.

  44. David Hollis 7 years ago

    My elderly mother was discharged from hospital without a CHC assessment, despite the family requesting it and my sister introducing herself to ward staff as enduring power of attorney for my mother. I complained and was given the excuse that a RNCC assessment was completed not the CHC, because that would have delayed discharge, and the discharge co-ordinator and social worker already were aware that my mother was previously self funded, despite the residential care home refusing to accept her back due to her nursing needs.

  45. Arun Desai 7 years ago

    My mum is in hospital,she is 87 years old,her health is not so great,she is diabetic and housebound,she is not able to look after herself,she has dizzy spells and she collapsed and was unable to get up,she is in a sheltered home,the social services wants to discharge her back to her sheltered home,and I have said that she is now frightened to go back to her flat as she cannot even cook for her self, and she lives alone,the social services have offered to send carers three or four times a day,I asked them what happens if she collapses when they are not there?their reply was that if she wears a gadget round her neck,and presses the button,she will be fine,which the family does not feel satisfied.I have requested she is put in a care home,and they have refused,even though her own doctor has suggested that she cannot now look after herself.Could you please advise how do I deal with this.

    • Angela 7 years ago

      Thanks for your comment, Arun. It sounds like a very difficult situation for you at the moment. The reluctance on the part of Social Services to find a good care home place for your mum is almost certainly motivated by budgets, but you could write to them and highlight that there is a serious risk of neglect if they don’t act.

  46. Ian Belton 7 years ago

    If a patient is vulnerable a Health Needs Assessment is required. If it is started by a Checklist and the patient is discharged before the full Multi-Disciplinary Team assessment then Paragraph 64 of The Framework states that both Health and Social care (see glossary) are the responsibility of the PCT. This is reinforced by the directive that a Section 2 form for the Social Services to take over funding cannot be issued until the full MDT assessment has been completed.

    • Angela 7 years ago

      Thanks very much for your comment Ian.

    • Sarah Wooller 5 years ago

      thank you so much for adding this.

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