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.

22 Comments

  1. Susan Hickman 1 month 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.

  2. Jane spencer 2 months 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.

  3. Janice 2 months 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?

  4. Pippy 9 months 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.

    • Author
      Angela Sherman 9 months 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.

  5. Alison Zammer 9 months 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.

    • Author
      Angela Sherman 9 months 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.

  6. Pippy 9 months 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 ?

  7. Neena RAWLINS 11 months 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.

    • Author
      Angela Sherman 11 months 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.

  8. Helen 1 year 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!

    • Author
      Angela Sherman 1 year 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/

  9. Maria 1 year 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.

    • Author
      Angela Sherman 1 year 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.

  10. Miss Maria pace 1 year 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

    • Author
      Angela Sherman 1 year 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.

  11. Lucy Adams 2 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.

    • Author
      Angela Sherman 2 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.

  12. Jonathan avery 3 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 3 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 2 months 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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