What to do if your relative is in hospital and needs full time care

What to do if your relative is in hospital and needs full time care

Make sure your relative is safe and properly assessed in hospital

Elderly relative in hospital needing full time careThese tips are taken from our new and updated guide, How To Get The NHS To Pay For Care, and will help you if you’re facing pressure to get your relative out of hospital and into care…

Elderly people generally fare very badly in hospital in the UK and many are discharged too soon in an attempt by the hospital to free up the bed, yet without the proper NHS Continuing Healthcare assessments having been done and without proper ongoing care arrangements having been put in place.

Hospital social workers, as part of the discharge team, often seem very quick to tell someone they’ll have to pay for their ongoing care – even though they may know that no assessment has taken place to ascertain who is responsible for paying for that ongoing care. This is established through an assessment for NHS Continuing Healthcare.

Many families are also told that their relative will be assessed ‘once they get to a care home’. Again, this could seem to be an attempt to pass someone over to the local authority for means testing before the NHS has to assume financial responsibility.

When this happens, of course, the responsibility then falls to you to challenge this and track the maladministration back to when that mistake was made.

Insist on an assessment for NHS Continuing Healthcare

Do this while your relative is still in hospital – and don’t let anyone convince you your relative ‘won’t be eligible’ until the proper assessments have been done.

Families report that hospital staff are not always aware of Continuing Healthcare or the assessment process. However, this is no reason for assessments to be overlooked.

If your relative is going into intermediate care and their ongoing health and care needs are not yet clear, the assessment process may be delayed until things are clearer. They may, for example, improve with short-term rehabilitation. Equally, they may deteriorate. The NHS can wait to do an assessment to see how effective the rehabilitation is before they assess ongoing needs. However, your relative should not be charged for intermediate care, and your relative cannot just be told to pay for their ongoing care, whether at home or in a care home. It must be clearly shown, through assessment, whether their funding is a local authority or an NHS responsibility.

Make sure the hospital knows you want to attend all Continuing Healthcare assessments for your relative, and let them know you’re fully aware of the NHS Continuing Healthcare assessment process. Once the Discharge Team is aware of your knowledge, they may stop pressurising you so much.

Section 2 notice

At the point where the hospital decides your relative is no longer NHS 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.

What this means in practice is that the NHS is shifting budget responsibility to Social Services, who will then means test your relative. 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.

The NHS of course wants people to occupy hospital beds for as short a time as possible, because of the cost, which is understandable. However, many families report that the NHS will sometimes, incorrectly, try to hand over responsibility before proper procedures and guidelines have been followed. If the hospital tells you that they need the bed and that your relative is ‘bed blocking’, remind them that it’s their problem, not yours, and that their primary concern should be the proper care and wellbeing of your relative.

Make sure you know who the hospital discharge coordinator is for your relative and let that person know you’re aware of the discharge procedures that have to be followed.

If the hospital has already issued a Section 2 notification, ask to see a copy. You are entitled to see it as your relative’s representative. Make sure that everything on the form looks up to date and correct and based on a current assessment of health needs and that your relative has been assessed for NHS Continuing Healthcare. If the form is incorrect, raise this with the hospital. They will have to withdraw the Section 2 notification and do a new one.

Don’t be pressured into a quick discharge from hospital

No one who needs any kind of ongoing care should be discharged from hospital without a proper assessment for health needs and without a full package of care in place and available to them as soon as they are discharged. There should be no gap in care.

Don’t be pressured into a quick discharge from hospital. And beware – if you sign anything from Social Services you may be opening yourself up to paying for care, or giving them the opportunity to bill you for care. So check carefully anything you sign.

Once your relative is out of hospital, it’s much harder to fight for care funding because you have less leverage. All the while the hospital is anxious to get your relative out, the urgency of the bed situation can actually help you. It’s very sad that it should be like this, but many people report this to be the case.

Since Care To Be Different was set up, we have been approached by over 1,000 families, and this specific issue is one of the most common situations we hear about.

Delayed Discharges

A ‘delayed discharge’ period starts from the time your relative was originally meant to be discharged (the first Section 2 notice) until the time he/she actually is discharged – with appropriate ongoing care.

Once a new discharge date has been decided, a Section 5 Notification will be issued by the NHS to Social Services. All rules about carrying out proper assessments remain the same.

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 without care and attention. Your relative should be properly dressed and fed, given enough drinks, and have any continence needs addressed throughout.

Your relative should only be sent home or elsewhere if ongoing care is in place and they will be safe at their destination, including if that’s likely to be a cold and empty house.

Find out more about NHS Continuing Care funding in our e-book, How To Get The NHS To Pay For Care.


  1. vanessa 4 weeks ago

    my dad lives with me, he is blind, has suffered many mini strokes and has been diagnosed with Parkinson disease. At present he is in hospital after having a mini stroke for the second time in 3 months. I have to carry out all his care, i also have a 28 yr old son who lives with me and has a rare genetic condition which means he cannot use his arms or legs. I am not going to be able to look after my dad at home anymore as his condition is and will deteriorate. Can i refuse to have him back home and insist on a care home placement?.. I love my father but cannot carry on.

  2. Diane Burton 2 months ago

    my 76yr old husband wanted to come out of hospital. I kept asking doctors for information about husband. He had an episode in hospital. My husband said he had a morphine overdose where he was delirious and refused treatment and said they were taking him somewhere. I was on phone to my husband and he wanted me to call police and tried to punch doctors and nurses. The doctor then answered my call said my husband had global cerebral atrophy with no acute pathology and he and physiotherapist referred him to geriatric rehabilitation. On another call I declined social worker input and refused rehabilitation. I knew my husband would die without my being with him because we have been married 48 yrs without separation. They didn’t like this and he was discharge home. He is happy and eating more and walking about and glad for us to be both together. The coronavirus stopped my input with hospital, physiotherapist, o.t and doctor. I was too upset to be without him. I hope it doesn’t go against us. I do have power of attorney but not signed – should I get it signed so they have no power to take husband away from me.

  3. Sheila 3 months ago

    Hi I am helping my elderly neighbour as he doesnt do internet doesnt really use a mobile either.
    The problem is that he has been looking after his wife at home and has been bedridden for 4 years with osteoporosis. She cannot weight bear. Nearly a week ago she was taken into hospital as she was getting very weak and was not able to feed herself and had an infection (not covid related) which was not treatable at home. They are now at a position to send her home but my neighbour cannot look after her any more.
    Are there any homes in the northampton area who would take bedridden patients. They do have a small amount in savings

  4. Joy 3 months ago

    I am soo sorry to hear this. It must be incredibly frustrating for you to not be with him. It is just awful. Could the ward video call you? It might be worth asking. I don’t know if that would be any better. My mom has been in the hospital for 8 weeks so I can really appreciate how you are feeling and the mental anguish and anxiety being caused. I am also finding it extremely difficult getting information. I do hope he’s back home with you soon.

  5. My husband 76 yrs was admitted to Q.E Hospital, Birmingham diagnosed with bowel cancer. 4 inch tumour was removed two weeks ago. He now has a stoma and because of coronavirus – he has been shown how to change the stoma but I have not and was told I would be sent a video. He has been in Q.E Hospital for 3 weeks and I have not been told anything. Naturally I cannot visit like everyone else but we find it difficult to communicate for mobile phone. As my husband is not very good with mobile phone. We have been married for 47 yrs and I feel totally isolated from him. He cant be discharged until he is confident with stoma and it has burst a few times. He had pancreatic cancer 10 years ago and I had to phone Q.E for District Nurse to help check the two tubes coming out of his stomach when he was discharged home. He is in pain and no information is forthcoming to me.

  6. Ian McClymont 9 months ago

    I am in a quandary and need advice. My father had a CHC in September which we appealed early October as note keeping from the care home was deemed not readable and not fit for purpose by his social worker.
    3 weeks ago his home sent my father back to hospital as they deemed he needed a complete review and EMI nursing did not meet his needs.
    In hospital a higher drug has been administered and he is due to be released to a dementia plus care home which is double EMI nursing costs on Thursday.
    As the CHC appeal is still yet to be completed the funding for his £1900 a week care will be paid by the local council for 6 weeks and then a DST will be made.
    Do I insist before hospital discharge that the CHC appeal assessment be completed? as it seems a convenient excuse to use the CHC assessment appeal as delay for funding.

    • Hugh Murphy 8 months ago

      My 86 year old mother is currently in rehab after suffering a massive stroke in the beginning of December 2019 .we were lucky in that the royal Victoria hospital in Belfast who are the leading pioneers in the new clot retrieval procedure were able to retrieve most of the clot and this has greatly reduced the damage to the part of the brain that has been affected.
      At this stage I must say that she has made a remarkable recovery with all thanks to the team who carried out the procedure in the Royal Victoria Hospital in Belfast.
      The social workers in the rehabilitation ward of the Mid Ulster Hospital tried to tell us that my mother was ready to be discharged to her own house with a four time a day care package to which we have refused to except and have had countless arguments with them .
      They now have said that she can be expected to receive residential care as they have assessed her as only needing the assistance of one .
      We have seen or mother on a regular basis needing the assistance of two and have spoken with the nursing staff as regards have her graded as needing the assistance of two and they have told us that on a good day my mother only needs one but that on a bad day she requires two .
      We have spoken to a number of residential care homes who have told us that unless my mother meets there requirements when they carry out their own assessment then they will be unable to take her due to the lack of mobility.
      We have also spoken to two nursing care homes who in turn have connected the social worker who is dealing with my mothers care, to be told that she will not be upgraded to requiring nursing care.
      It is or opinion along with the nursing care manger who contacted the social worker in question that this now has developed into a personal issue with the social worker because we as a family have stood up to them and are trying to get the best care for or mother.
      We feel that we need help to resolve this issue but are unable to get any advise from anyone hence the appeal on this forum
      Any advice would be greatly appreciated
      Thank you in advance

      • Care to be Different 8 months ago

        Hi Hugh – Please feel free to call us if you would like to chat this through with us. 0161 979 0430
        Kind regards

  7. Kim 10 months ago

    Hi. My dad had a stroke overseas and currently, he is staying in Germany’s hospital for rehabilitation.
    He has been paid a pension credit benefit and recently he has received a letter informing him about winter fuel payments, which is going to be sent to his account.
    I think this payment plus pension credit payments need to stop.
    Who should I inform?
    I have called HMRevenue and said that he is staying in hospital oversea. I was told that they accepted the changes and will send a letter but this letter never comes to our house.
    Should I ignore this?
    He was living with us and don’t want my father to have any troubles with tax office or me neither.

  8. Kim 1 year ago

    Hi my 86 year old mother who lives in Wales has been In hospital after urosepsis for the second time, she has vascular dementia and Altziemers and several other medical issues including mobility and heart problems double incontinence has a cathater insitu. We have been through a DST which we attended along with our excellent social team who know my mother’s history well, the DST was nurse lead (this nurse had told me before DST that she was not CHC) I found this to be very unprofessional. On the day of the DST several domains were not agreed on and the nurse was adamant that what she thought should go, I said the higher domain should be recorded as per the framework guidelines as social services were in agreement with us and notes to be added to both reasonings for grading.
    After DST nurse was not happy and arranged another meeting we did not attend, social services said nothing had altered but they had been invited to represent my mother at the CHC panel meeting.
    The panel decided my mother was entitled to FNC, even though she is now totally dependent on all her needs being anticipated, but want to review this in 6 weeks as it was agreed that the DST may have been done to early and that her situation may improve if only slightly or deteriorate, the GP description is that my mother due to sepsis is severe in brain related injury and is likely to deteriorate, she will not engage in any rehabilitation with occupational health.
    We have been asked to look for a nursing home ASAP, my mother for now will be self funding, we feel to move her now until this review has been done will be detrimental to her health and welfare and she may not be moved to the appropriate care home. Myself and my husband have power of attorney for health and welfare and financial.
    The wrong decision will have a tremendous impact on my mother’s life.

    • Care to be Different 1 year ago

      Hi Kim – So sorry to her how you have been treated.Please feel free to call us to discuss how we might be able to assist you with this awful system. 0161 979 0430 Kind regards

  9. Jan Barton 1 year ago

    My Mum attended hospital as outpatient for 7 months being told eventually that she did not have cancer. During that time she had mental health assessment of Mild Dementia. 2 days later she was admitted to hospital with Sepsis and UTI followed by getting Campylobacter during her hospital stay. She wasn’t responding to anti biotics, had driver to deliver anti sickness and pain relief as unable to keep any food/fluids down. From being an active 83 year old looking after herself, getting bus to shops, attending social events she ended up unable to stand on her own two feet within 2 weeks of being admitted.
    A scan eventually confirmed she had terminal cervical cancer, unable to have biopsy as too ill was now on permanent oxygen and catheter due to near kidney failure.
    Moved to Marie Curie hospice for palliative care 5 weeks ago, has had ups and downs and many nights we thought were her last. The move took its toll and Mum suffered from depressed state until she settled in.
    Marie Curie removed all pain relief last week. Say that Mum was sleeping too much probably due to medication. A week on she got moved from side room on her own into 3 bed ward and went into depressed state again crying each time she woke. She still sleeps a lot and is eating very little.
    Continuing Healthcare Funding approved 3 days ago, they say she needs to be in care home as is stable.
    They take no notice that we say she doesn’t understand what’s going on, short term memory greatly affected. Can’t remember events from the same day or previous weeks and doesn’t remember she has cancer.
    We’ve looked at some care homes but the only suitable one has a waiting list. (Family live in different locations so need one suitable for all to visit) Other homes with beds are like building sites as improving due to poor scores.
    How long can Mum stay in Marie Curie? What can we say to fight for her to stay, the move will be devastating to her mental health.

  10. Karen 1 year ago

    Help please! My mum had a severe stroke and has been in hospital for 8 weeks. The other week my dad had a meeting with everyone at the hospital and it was agreed that mum should be moved into a nursing home. They said they wanted her out by a week on Friday. So my dad found a home who would take her and paid the fees and we thought she would move on the Thursday. Thursday came and the hospital completed the checklist. She passed/failed it (however you look at it) and so will be put forward for the assessment. But now they won’t discharge her until interim funding has been agreed (or not). They say this takes 5 days – but 5 days later we are still waiting. And all the while there’s an empty room for mum in the nursing home that has been paid for. Is there anything we can do except wait? If we stop the process now will that count against in the future? If we do stop the process now how soon would it be before we can apply again? Any help/advice you can give would be much appreciated. Many thanks Karen.

    • Care to be Different 1 year ago

      Hi Karen – it is less common for the second stage of the CHC Funding assessment to be carried out in an acute setting. If the room in the nursing home is being paid for then it will be possible to recover the costs incurred if your Mum is ultimately found to be eligible for the funding from the NHS. Do get in touch if you would like to discuss it further. 0161 979 0430 Kind regards

  11. Janet 2 years ago

    My 86 year old mother lives with me and has Alzheimer’s and broke her hip in July. She was discharged from hospital with out a continuous care assessment being done and the hospital OT told me that they no longer carried out home assessments. This OT discharged my mother on the basis that she would be able to climb the stairs to access her rooms. My mother had to have help getting over the front door step!!! She has since had a CCA but only just failed .
    As a consequence of this our lives have been turned into a living nightmare as my mum was incontinent and did not have access to a bathroom or toilet. I normally slept downstairs on a sofa bed and had to get rid of it and bring my mums bed down for her to sleep on. I had to sleep outside in a caravan but this is not in keeping with my Tenancy agreement. We were told by the OT that it would be at least 10 weeks before we could be assessed for a stair lift.
    I am not my mothers carer as I am also sick but this was a position that I was forced into and as a consequence my mental health has suffered and as Im prone to anger management issues my mum obviously gets upset when she see that things are getting on top of me. I would never hurt my mother but it seems that she has been flagged up as being at risk from me by staff at a day care centre that she attends. They have also knowing that I have LPA over her health and care needs got her to sign an application form to go into an assisted living place without consulting me or having me present.
    My mothers social worker has allowed her to live with out any bathroom facilities for about five months now and she has finally admitted that my mum should of had an OT assessment before leaving hospital. We have never heard from any one about a stair lift in all this time. My mother was discharged from hospital purely on the basis that someone was living with her at home. No one carried out an assessment on me to see if I would be able to cope with the situation. We had carers and district nurses coming into the house for short periods but I stopped them from entering the house when I found out that they were tipping feaces contaminated water down my kitchen sink and using my mixing bowls as wash basins to do full body washes on my mother. ( we think that my mum got C dif or something in hospital which is why this is so worrying) I actually told two district nurses to leave the house because they said they were not prepared to open the gate at the bottom of the stairs to go up to the bathroom. I had made a makeshift bathroom outside in a shed and the OT told me that I was not allowed to do this and the social worker lied to me when she said that my mums GP had asked that I didn’t shower my mum outside. Not one person asked my mother if she minded being given a shower outside. I find it hard to believe in this day and age that an elderly person with double incontinence can be sent home with out having any bathroom facilities. When a friend living a few doors away from us who is now my mothers one to one carer offered to put my mother up in her own home for a week to give me a break this was also reported to social services. They were told that my mother was living now living with them which was just not true . She had a down stairs toilet and my mum really enjoyed herself with helping the children with their homework. More importantly I was able to get a break and get my mental health stable. It seems to me that social services can be completely incompetent and negligent and get away with it. The one thing that is so noticeable is that social services dont make it easy for you to make complaints about social workers and they dont like to put anything in writing if they can help it.
    I am now going to make a complaint about the OT and my mothers social worker and I am glad that I have made audio recordings of all phone conversations with them since her discharge. I would be curious to find out how many complaints made against social workers are upheld.

    • Amanda Parker 2 years ago

      Hi Janet what a terrible situation you and your mum are in through no fault of your own . NHS and social services are terrible . I have a 96 yr old nana in nursing home bed bound but had many difficulties reasearch there is a tick I did kind of my own assessment to see if my nana falls is eligible as when assessment comes up you can then challenge the scores more easily. If there’s challenging behavior NHS tend to pay for that even over other problems . Sounds like an EMI dementia unit would be best for her but obviously up to you but care at home not all cracked up to be doing it yourself even though might think right thing will ultimately physically and mentally drain you . With no thanks for it . If going to care home check CQC reports last few years not just one year . Look beyond the hotel appearance care homes do now . More important nice room clean no smell . Choice of food . Basic care needs met . Sounds easy but to get even basic care is a challenge . Also make it know in nice way you want to check your loved one ie check bottom no pressure sores not sore etc . If not gone in to home with pressure sores it’s neglect of care if in home get one . Enough aids etc and if care good no need for anyone to get pressure sores unless when in active stages of dying . Also continuing health care means NHS has to provide care but equally like my nana now wants to go home but not fit but got capacity of mind to an extent and would bE bad choice countining health care means that decision for nana to go home won’t happen thank god so it can bE useful especially for people with mental capacity but don’t fully understand bigger picture no power of attorney and nana’s very stubborn . Hope this helps from amanda

  12. Kathy S 2 years ago

    Question from Kathy: Mum is at a teaching hospital, admitted due to a UTI –

    In the four months’ previous she has had UTIs, Sepsis, double pneumonia, diagnosed with breast cancer and had a failing heart with abdominal and arm oedema. I forget the rest. Oh yes, problems urinating, so they put in a catheter last night. She can’t eat much at all 100-200 calories a day, and chokes and sometimes vomits when she eats or drinks. She has had diarrhoea (I can now spell that) several times a day for three weeks now, that caused little interest.
    Due to her weak heart (this doesn’t interest them of course) she suffers considerable upset when moved from the bed to a commode, her blood pressure drops to 89/42 or the like, and reports increasingly to me that she is frightenned to move. She is getting increasingly breathless with any exertion, even when in bed, enjoying sitting on her bedsore.
    Now today they have discovered she has C-Diff and was delerious this morning.
    OT are hovvering around with “care plans” – the nurse admitted this pm that she won’t be discharged “soon”
    I just think she should be in hospital and they should back off this chat about sending her home.
    Previously I have been doing the caring (wiping up everything hope I haven’t contracted c-diff) and am at a loss, as is my brother who mainly does the admin and reprimanding.
    We have trouble getting any information.
    Any thoughts?.

    • Care to be Different 2 years ago

      Hi Kathy – sorry to hear about your Mum. I t certainly sounds from what you are saying that she should remain in hospital but if they do say that she is fit to be discharged then you really need to ensure that a suitable care setting is found which is capable of managing her needs properly. A full CHC assessment will also need to be carried out as soon as possible.

      • Kathy Stephen 2 years ago

        From Kathy: Thank you so much for reacting to my screed.
        Mum is still at the EAU unit, because no “hub bed” will take her with lingering cdiff. Then after physio at the hub they plan to bring her home. Then it will be a fire watch all the time.
        We will ask for a full CHC assessment as you recommend, once she is at the community hospital and OT get on her case again. Thank you for this advice.
        I am shocked that her hallucinations and chf seem to be of no concern. I guess cuts are the reason, the staff are doingntheir best, but indeed we will push for what you say, the squeaky wheel gets the oil.

  13. Ann Lawrence 3 years ago

    Scunthorpe hospital have completed an Initial stage 1 assessment without our knowledge with my brother who has severe learning difficulties. They have issued a Section 2 to the hospital social workers.
    No one has engaged with us although we said at the start we wanted to be present for all assessments.
    The hospital social worker said when the Section 5 is issued then a meeting with them and the family will be arranged to determine my brothers needs.
    She denied NHS Continuing Healthcare funding had been ruled out and the Section 2 meant my brother only required social care.
    I am still in shock at the way we have been treated.

  14. Gillian Berg 3 years ago

    My 89 year old father is in hospital with a broken ankle.It is in plaster and he is non weight bearing. He has a moisture lesion on his sacrum and is turned every two hours and sitting out is medically recommended for 3 hours per day.He has type 2 diabetes and was mobile in a limited manner before his fracture by way of a frame.
    The hospital have declared him medically fit and that he has been assessed as suitable for residential care until the plaster is eventually removed and his mobility assessed.
    I am stating that whilst he is in plaster he has a health related need and the NHS need to provide care in a non acute hospital setting until he can be assessed for intermediate care.The hospital maintain my parents need to arrange and pay for the care(savings just over threshold) and some discharge staff are being very unpleasant with my parents about the fact that he is there.We have identified a home near to my mother but there is no vacancy at present.We have not been given details of any other suitable bed.
    Am I right to argue that this is a health related need because he is totally non weight bearing on the insistence of the consultant?Who do I need to escalate this to within the hospital to get round the discharge coordinator?

  15. Susan Hickman 3 years ago

    My mother who suffered a fractured neck of femur & had to have a partial hip replacement was discharged back to her care home from hospital on Friday. I was NOT invited to attend her face to face needs assessment because her needs have now dramatically changed because of this fall prior to discharge. In fact have high suspicions no assessment was carried out at all. I actually spoke to the hospital social worker & asked for a reassessment for her care to be funded now by the NHS. She told me this: You will not get funded care at a residential home its only at nursing homes. I still asked her to do it & she said there was no point. The assistant manager of the home she came from went to assess her prior to discharge. She has confirmed no hospital Social Worker was with her & no member of ward staff either & that there was nothing in her notes to indicate any assessment had been done. There is also no copy of an assessment sheet showing that it was done in her discharge pack back to the home & the home have told me it should have been included in there. Advice please would be appreciated.

  16. Jane spencer 4 years ago

    We are due to meet social services at Darent Valley Hospital to complete a best interest assessment. Two weeks ago we completed a DST and although recorded 1 severe my Aunt has been declined for CHC funding, even though 2 weeks prior to that the hospital felt that palliative care would be appropriate.
    I have been trying to find a copy of the local authority limits test that social services have to apply. Can anyone help us, as when I asked the social worker what her role was in the DST meeting she became very defensive and refused to answer any of my questions. When asked if she would be completing a LA limits assessments her answer was NO!
    Also we asked to record the DST meeting and for a copy of the document at the meeting and was declined both.

  17. Janice 4 years ago

    Does the same process apply if a relative is in hospital but was taken there from their current care home (previously a residential home) but the home are now refusing to take them back, meaning they need to go somewhere else?

  18. Pippy 4 years ago

    Angela – thank you for your reply – found out dad had “passed” the checklist screening in April (3 A’s, 3B’s & 5C’s) and despite CHC requesting a social worker to be allocated in April, this was not done until June (a few days after my dad was then admitted to hospital & we chased CHC up). The hospital issued a section 2 and 5 ( to trigger discharge) two weeks after admission despite our insistence and standing our ground, that as he was already screened positive into CHC, we would not allow discharge until the CHC assessment took place.
    Dad remained in hospital & a further 6 weeks went by with no real movement. We were left in the dark and no one seemed to know who was doing things and who was responsible. During this time we visited homes and found two suitable ones with availability. We arranged for them to carry out their assessments with dad and got very “busy” in gathering evidence and understanding the whole process inside out. Finally the social worker invited us to a meeting on the 15 July to do an assessment – we thought it was for CHC but it turned out to be a total waste of time as it was a “citizens assessment”. I spoke with CHC again & asked for a full case history and asked why things were not moving along, only to discover the social worker had been offered a CHC assessment date of the 4 July but declined it. I found this out on the 20 July and contacted the social work team to find out what was going on and then insisted the social worker who had turned down the assessment date was replaced. I also discovered the hospital complex discharge team had done an assessment on 13 July but had not sent it to CHC and mental health had done an assessment on the 6 July, but it was deemed incomplete. Until these reports were submitted to CHC. CHC would not give an assessment date and the process was being held up. We contacted mental health, complex discharge, the new social worker and put pressure on everyone to take responsibility and get their jobs done and asked a lot of questions on the hospital ward and gathered evidence, as we knew the notes were not written in such a way to be supportive ( MDT like up to date info and dad had been in hospital for 2 months so it mattered). In the process we were lied to, denied access to reports (despite our LPA status) and given the run around but we remained focussed, determined and nothing short of persistent and finally on the 21 July we got a date for the MDT meeting for 2 August.
    It was almost 5 hours long, we had to challenge a number of inaccuracies, evidence that did not match the situation, question why reports were poorly written and insist on the wording on the DST to be followed when considering a needs level. We did not lie, we did not exaggerate but we had looked into everything and knew the process inside out. We got a 12th domain submitted, despite a number of professionals unaware a 12th domain existed or how to score it. The meeting ended with a recommendation for CHC so now we await the final decision (2 severe, 3 high, 6 moderate, 1 no)
    This process is far from easy and having been through it thus so far, I am shocked at how little, so called professionals know about CHC and how they behaved in conducting and submitting crucial reports and evidence. It is almost insulting to hear “professionals” who have had no prior contact with you or your loved one and have perhaps observed the person in question for 20 mins doing their assessment, telling you they did not see things you know are true and have been experiencing for years or telling you Alzheimer patients are predictable in their behaviour. The only thing predictable about an Alzheimer’s patient is that they are unpredictable !!! I recommend all families complete the “Family Assessment/Advocate assessment sheet” that CHC can send to you, to form part of the official evidence for the CHC facilitator and that you must go through the DST before the meeting to understand the language and know your evidence and cross reference the domains for nature, complexity, unpredictability and intensity and most importantly do not be afraid to speak up.

    • Angela Sherman 4 years ago

      I’m so glad you have had a positive recommendation, Pippy. Be sure to get the final decision in writing. Many, many families would, I’m sure, echo your thoughts about what goes on in the assessment process – and your advice about not being afraid to speak up is spot on.

  19. Alison Zammer 4 years ago

    Hi my Mum is 84 and has broken a bone at the top of her tibia just below her knee. She is in a hinged leg brace. She has heart problems which have caused odema in various areas of her body and eventually will die from her condition but this may be months away – no one knows especially as she is a tough cookie. She has a catheter fitted and also on low dose oxygen. The hospital basically say that she can go home and I know that my Mum wants to go home. She doesn’t suffer from dementia but has suffered from confusion at times in the last week. She has a borderline urine infection which may have caused this but could also be caused by her heart problems as basically her body is slowly fading. The hospital say that she can have carers 4 times a day or can go into a nursing home. I have always promised my Mum that she will not go into a home unless she dementia. I am happy for her to go home but want to wait until the hinge brace is removed in approximately 3 weeks as then they can give her some rehab so that she can get to the toilet and make herself a drink. I am worried that carers going in for 15 mins max a time isn’t enough and I am worried for her safety and dignity. The hospital said that they will look into funding to have someone living with my Mum basically in her dining room but she doesn’t want a stranger living with her. The discharge nurse seemed to think it strange that I would want to meet the carer first if this was to go ahead and said that I was asking for too much. Do we have a right to ask the hospital to keep mu Mum there a bit longer or not. Really worried that mu Mum stands a high chance of falling without some physio and rehab.

    • Angela Sherman 4 years ago

      Alison – if you feel your mum is not yet fit to be discharged, then stand firm and insist she is kept in. Stress all the risks to her if she is discharged now and without a satisfactory approach to her ongoing care. In addition, make sure she is assessed for NHS Continuing Healthcare funding before she is discharged.

  20. Pippy 4 years ago

    My 75 year old father, suffering from Alzheimers, was admitted to hospital with a chest infection and UTI & serious mobility issues on 1st june – he is still there as my mother has admtted she can no longer cope looking after him at home, even with the employed carer we had. We are dealing with a social worker and pursuing CHC but it appears on the 13th june a section 2 was issued and on the 16th june a sction 5. We had no knowlegede of this and are worried that this means the NHS has passed over responsibilty to the LA. We have found 2 nursing homes with a vacancy and want my father to go ino one of them but obvioulsy we are insisting the CHC checklist and assessment process is carried out first. We had a meeting with the social worker last week thinking we were going to get the assessemnt underway but it now appears she has just written up a “Citizen’s assessment”. My father was actually “screened” into CHC in April by a discrict nurse but no progress has been made – what should we do ?

  21. Neena RAWLINS 4 years ago

    My 81 year old mother in the advanced stages of Alzheimer was released from hospital yesterday. I agree that she is well enough to come home but the hospital social services (SS) team were so keen to free up her bed they only gave the care agency 24 hours to update her care plan which has increased. The carers did not turn up last night and after several frantic calls to the agency, someone finally called me back to say that the agency was over stretched and didnt have enough carers in place to cover my mothers calls. Off course the hospital SS team will blame the care agency and the care agency are already blaming the hospital SS. In the meantime an 81 year old woman goes without the care package she was promised was in place before being discharged.

    • Angela Sherman 4 years ago

      That’s awful, Neena. You may want to write immediately to the hospital safeguarding team, the hospital chief exec, the Head of Adult Care at the local authority, the local authority safeguarding team – everyone relevant you can think of – and complain in the strongest terms that a vulnerable person has been left without care. This is a serious matter.

  22. Helen 5 years ago

    Mum, 84, has had two strokes and a heart attack, pulmonary embolism so, plus has severe rheumatoid arthritis and many other medical conditions that have taken her mobility and her speech. But mentally she is still bright. My dad, aged 84, has stoically cared for her over the past five years. Six weeks ago, she was admitted to hospital with a UTI and fluid retention. After a week and a half weeks were given the news that she was deteriorating and category 3 antibiotics hadn’t stemmed the infection that was now in her blood causing sepsis. This was the day before her 84th birthday. All medication except core drugs was withdrawn and we waited. Well, she rallied and got over this infection! But was more weak than before and bedbound with pressure sores, incontinence and needed turning every hour plus administration of medication. We (my dad and i) had a meeting with hospital social worker and staff and it was agreed she could not return home, rightly so, due to her complex medical and nursing needs and should be cared for in a nursing home. We agreed. I asked about NHS Continuing Care and was told the Checklist had been carried out but basically mum did not qualify and a financial assessment would need to be carried out on my dad. Both he and my mum have completely separate bank accounts with my mum paying all the household bills.
    A few days later, my mum succumbs to hospital acquired pneumonia and at the same time my dad comes down with a kidney infection. I have to work so couldn’t take time out. Both were very ill. The financial assessment was postponed. My mum was on intravenous antibiotics therapy and oxygen plus salts as her levels were once again critically low. My dad felt well enough to visit her today. He then was told they were discharging her tomorrow. He panicked and has now taken to his bed! We’ve been told mum will be discharged to the nursing home tomorrow. I said no way. I am working plus my dad’s not fit to get mum’s stuff there. They’ve put mum on oral antibiotics. She had a minor heart attack this evening but they’re still going ahead. I feel yes, she needs to get out of hospital but..we need time (today is Wednesday and we’ve asked for Sunday ) for us to get her things moved and sort out her room. Social worker still says she doesn’t qualify for NHS Continuing Care.
    Not sure what to do next. I have to work as not allowed time out. Talking to home tomorrow. They want to know how we are going to pay for her care!

    • Angela Sherman 5 years ago

      What a very distressing experience, Helen. Several points here: no one should be doing a financial assessment on your dad for your mum’s care. It is only her money – or her share of any joint accounts – that come into the equation, not your dad’s. BUT – no financial assessment should ever be carried out before a clear and transparent Continuing Healthcare assessment process. It sounds as though the Checklist has been done behind your back. You can challenge this. Without the proper Continuing Healthcare process, the local authority is potentially putting itself in an illegal position by means testing – and any subsequent care fees could be illegal. This may help: http://caretobedifferent.co.uk/nhs-continuing-healthcare-should-social-workers-be-involved/

  23. Maria 5 years ago

    Angela, reading your comment I agree totally. It is such a shame that 2 years on the same situations are arising. I believe that this is due to government cutbacks and pressures being placed on the NHS to find ways of reducing costs to increase services without being given any further funding.
    My own experience within the last week was having my 93 year old mother admitted to an acute ward with dehydration and a UTI which was causing her dementia to be worse. she was delirious and very confused. The local GP admitted her to a geriatric ward which in itself took 12 hours to come to fruition from a 12 mid-day call we eventually got her into hospital just after midnight.
    We were told by the sister on the ward and doctor that mum had an infection and would need to stay in hospital, she would probably be transferred to an assessment ward where she would have physio to get her to walk as she had been bed bound for several weeks and care to build her strength up so she would eat. This would probably take a week but she wouldn’t be discharged until she was well enough to go home and be able to be safe at home with everything in place.
    Due to her infection mum had a very bad first night and got out of bed and tried to find the nurses. I was called the next morning and told that due to her agitation the doctor was happy to discharge her with antibiotics for the infection. I wasn’t happy and asked for social services to be involved so that her needs at home would be addressed. When I attended the ward mum was dressed and ready to go home. I refused to take her unless they could guarantee we would have help at home to get her up and dressed and to bed, also that she would have a bed downstairs to help with her pressure sore and a commode as we weren’t sure she could make it to the toilet. These were all requests which i had made on initial visit. As the sister could not confirm this she spent 1 hour talking to the social team who confirmed a section 2 was needed. All the time the pressure was on us as a family to take her home and them saying it was our decision if we didn’t. Mum wanted to come home but wasn’t in a fit state or going to be in a safe environment.
    All i can say is the ward and staff were lovely and looked after mum but due to bed pressures and unable to cope with mum the easiest solution for them was to get her home. This was acceptable.
    Because I insisted on social services being present and going out of sequence and requesting social services myself i got the ball rolling. It is harsh but unless you stand up for your loved ones no one else will.
    So in short Angela you are right you need to insist to make sure you get what you are entitled to.

    • Angela Sherman 5 years ago

      What you’ve experienced, Maria, is sadly not unusual – and you’re right that families need to challenge what they’re told and not cave in to pressure from discharge teams, especially when it’s clear that it’s neither right nor safe for a person to be discharged.

  24. Miss Maria pace 5 years ago

    We had a meeting about my dad age 84 he has had a broken hip in May and then had a broken shoulder in July. He is in hospital now after another fall five weeks ago he had a big bump on the side of his head which he has bad headaches. We had a meeting at the hospital three weeks ago. Dr Mitchell said dad would go for rehab then back to his home. But now the occupational therapist is saying he can go straight home now as he can walking with a frame to the toilet and back to his bed. And that if he wants rehab he would need to pay for it. Can the O T override what the doctor says

    • Angela Sherman 5 years ago

      The statement by the OT could potentially be a financial one. If it is not safe for your dad to go home, then he should not be sent home. If a person needs rehab, it should be funded for at least six weeks.

  25. Lucy Adams 5 years ago

    Reading Jonathan’s comment above and Angela’s measured and though-out response:
    I have read this site and it seems to me that Angela goes out of her way to cite or praise instances of the care taken by NHS staff.
    I would like to add this in response to Jonathan’s comment: “scaremongering”. Really? It may be an idea to READ the sheer volume of comments and real life examples given on this site of poor treatment of those needing care and care funding assessments within our hospital system, before criticising an organisation such as Care To Be Different for simply doing all they can to right a wrong.
    In so many cases, we turn to the NHS when we need it most, and it’s there for us. But in many others, it’s simply failing the most frail and vulnerable – quantifiably.

    • Angela Sherman 5 years ago

      Thanks very much for your comment, Lucy. Sadly, families share hundreds of experiences with us of appalling practice in funding assessments, appalling care for the most vulnerable and a near-contempt at times for those who are trying to stand up for their relatives. It’s a very bad situation indeed.

  26. Jonathan avery 6 years ago

    Patients are lot dumped in discharge lounges not pushed out of hospital by discharge teams. Assessments occur via joint working agreements between social care and the NHS as the chc process was lengthy to say the least. Yes the NHS and social service have a duty of care to provide an appropriate level of care
    on discharge but patients undergo an in depth nursing needs assessment prior to being placed on a 24 hour care setting and it is a only to the recommended setting that patients are discharged. Having to place a relative in 24 hour is hrs enough without this scaremongering approach. The only reason a person is kept in hospital to undergo chc assts is for money saving not to ensure better care whilst the process is ongoing. Would you rather the NHS ground to holt because the beds are full of people going through the chc process who could be looked after equally well elsewhere. The fact is to admit a patient to hospital a Patient also has to leave hospital. Or would you prefer to go back to the good old days of patients lying on trolleys in the A and E depts for ten hours plus.

    • Angela 6 years ago

      Thank you for your comment, Jonathan. If the proper process is followed in your area then that’s something to be applauded. However, the experiences we hear about from the hundreds of families who contact us do not reflect such a good situation. Families report huge pressure to get their relative out of hospital, with discharge teams declaring people ‘fit’ for discharge when they’re not, and when it’s clear that the hospital’s overriding concern is to get the bed back. I imagine many of those families would endorse the original aims of the NHS, but now despair at the way older people are pushed out of NHS care without the proper NHS funding assessments having been done. The recent All Party Parliamentary Group Report, ‘Failing to Care: NHS Continuing Care in England’ reflects this current state of affairs. The point we’re making here is not that people need to leave hospital, it is that older people are often pushed out of NHS care and into local authority means testing before the proper NHS funding assessment processes have been followed – because targets and budgets are now taking precedence over responsibility for patient care. Indeed, the President of the Royal College of Physicians, Sir Richard Thompson, has recently expressed his own grave concerns about this.

    • Mike 4 years ago

      My mother is currently in a discharge lounge, awaiting a physio rehab in an outlying hospital. She was moved there from her surgical ward about 7.30pm. I saw her the next day and spoke to the discharge facilitator. She to told me she was going to be discharged into a home care package (visits by carers at home). This was in spite of having been told previously that she would need a physio rehab for getting in and out of bed, to use the commode, before she came home. My brother is an OT in Sussex (we are in N.Staffs). He phoned and spoke to her OT, who said she was not yet ready to come home because of the problem just mentioned. If we had not intervened, she would have been inappropriately discharged. I’m not able to say whether this was a bureaucratic mix up, or a deliberate attempt to get rid of someone they regard as a bed blocker. It pays to ask, push, & ‘go higher’ if necessary.

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