NHS Continuing Healthcare funding and discharge from hospital
Here we feature a case study from Sarah, whose mum was being pressured to leave hospital – but without an NHS Continuing Healthcare assessment.
At the end of the article we also include a link to some vital tips you can follow if you also have an older relative in hospital.
Sarah wrote to us about her mum who had been in hospital and was seriously ill. She had been in hospital for seven weeks with a terminal liver diagnosis, and the hospital was struggling to stabilise her enough for her to go home.
Despite this, the hospital wanted to discharge her, but Sarah had grave concerns about this – understandably. In addition, no one had even mentioned an NHS Continuing Healthcare funding assessment.
Sarah explains…
“I hadn’t realised how horrific the physical elements of liver failure are. Mum was also permanently confused and had pneumonia. It was the toughest time of my life watching her deteriorate, The hospital was awful, and Mum was getting more and more distressed.
“The discharge team wanted to get her out, and I didn’t know what to say or do to stop them. I couldn’t believe how stressful this all was.
“We were gearing up to let them send her home, but then we found the information on Care To Be Different’s website, and our new knowledge stopped the hospital discharging Mum.
“We also realised we now had more power while Mum was still there, and had more chance of forcing the hospital to do the proper funding assessments. Everything felt like a quagmire, though – I’m so glad we at least had power of attorney.
“We played a strategic game (the hospital’s own game) where we led the NHS to their own conclusion that it was not safe to discharge Mum and that she should also have an assessment for NHS Continuing Healthcare funding. She could stay there for the time being while they completed several diaries of her behaviour and while they risk assessed her.
“It was a relief to have a little breathing space.
“Given Mum’s state of health, a Fast Track assessment for Continuing Healthcare was to be done – although we were warned that if Mum’s care was not at the level where she required specialist nursing provision she was likely to be turned down. From everything we’d read, this didn’t sound right at all.
“I am so grateful for the information we had from Care To Be Different. I used and cited a lot of it with the discharge team. It seemed to really annoy them that we knew so much! I can’t tell you what a help all the information has been.
“Despite assurances that a Fast Track would be carried out, Social Services then assessed Mum and said she part qualifies for NHS Continuing Healthcare funding. I knew this was rubbish. We had no knowledge of any such assessment, and we hadn’t even been invited. I insisted on the correct process.
“We were then told there was to be a Best Interests meeting, as they wanted Mum to go into a nursing home rather than back home, but they said the NHS wouldn’t pay for one-to-one care overnight.
“Having read so much by then, though, I was ready to fight.
NHS Continuing Healthcare and hospital discharge
“I suspected they would decline full Continuing Healthcare funding and that most of the ‘professionals’ involved would be pretty ignorant of the guidelines about Continuing Healthcare and the facts about funding. So my strategy was to educate the ward sister about NHS Continuing Healthcare funding – the NHS guidelines and the law – and to get her onside for the support we would need during the assessment process.
“I knew the assessors would tell me Mum’s care was all social care, and that they would means test her.
“The Continuing Healthcare assessment meeting was four hours long! The assessor kept making reference to the evidence in the diaries and medical notes, which was vague, incomplete and did not paint a true picture of need. When they asked the sister, she came up with everything we needed to pass the ‘nature, intensity, complexity and unpredictability’ element of the assessment.
“I’m relieved to say that, thanks to all the information from Care To Be Different, we have now got full Continuing Healthcare funding for Mum.
“The assessor that said without the description of Mum’s complex medical needs on a daily and ongoing basis we would not have qualified for funding. Sadly it would appear the old chestnut of who you know and not what you know is still alive and kicking. I completely see how flawed the system is.
“They need evidence in notes and yet they allow untrained people to make those notes – if indeed any are kept at all! They do not explain to you as relatives the importance of detailed diaries until the assessment meeting – when they tell you there is too little evidence to show ongoing care needs.
“I know they will do a review in three months’ time. I know Mum will be so much worse by then, if she is still with us.
“Without having read beforehand how underhand the assessors would be, I would not have had the pre-warning to play them at their own game – and a game, albeit and very unpleasant one, is exactly what it has been.
“My biggest learning over and above the information on Continuing Healthcare – and that I would pass on to others – is to make sure diaries are kept every day, and to make sure they are detailed and complete.”
Sarah’s experience is not unusual, unfortunately. When someone you love is dying, the last thing you want to be faced with is a battle with the care authorities. It seems those working in health and social care very often fail to follow procedure, don’t understand the assessment guidelines and/or fail to properly assess care needs. It often falls to the family to exert pressure to get things done properly.
Read part 2: If you’re in a similar situation with your relative, these tips will help you.
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My 61yr old Uncle has early onset Alzheimer’s and is currently in hospital as he is not safe to be in his independent living flat. I met with his social worker on Monday, he has been in hospital, medically fit, for over a week now! She made it clear she wanted a financial assessment and felt it in my uncles best interest to go home with care. No mention of CHC funding assessment. She gave me a half completed consent form to sign for financial assessment, I felt harassed and rushed in to signing this. She also said she had the MDT breathing down her neck to get him out, as he is medically fit.
Can I change my mind about the consent? Can I ask for the form to be destroyed? I am going to now start the process of CHC assessment. I am a nurse so have a good idea of what goes on “behind the scenes” and have witnessed CHC assessment tools being downgraded.
I am worried as I know that my area is one of the worst counties for awarding CHC funding.
My mum is in hospital at the moment- she had a fall at her nursing home broke her knee and leg this is the 3rd fall in a year she cant walk so its worrying this keeps happening I really don’t want her going back there while she has the cast on her leg worried they’re not caring for her properly can she have 6 weeks rehab and how do I go about getting this for her and also could I get her into another care home before she leaves hospital I think the hospital are keen to free up the bed but I have concerns sending her back to the home as she doesn’t communicate well has had 3 strokes and is very quiet never complains I think she is at risk and too many accidents have happened
My Mum has dementia. She is currently in hospital following a fall where she broke her knee. The doctor has decided that because Mum won’t tolerate a cast or keep bandaging on, that she is okay to go home without medical intervention and they will give follow up x-rays to check whether or not it’s healing. Mum lives on her own, my brother and I have been carers for three years, looking after her from her getting up in the morning until she’s in bed at night. We have always left her on own in bed, with sensors etc alerting us if Mum gets up. We are now being pushed by the Sister on the ward to get Mum into a care home because they need the bed and it is clearly not safe for Mum to be on her own any more at night. Mum has been in hospital for four days. I have been visiting care homes and struggling to find one that I think Mum would like, she has money so it will all be self funded. We have been told that no funding will be given to Mum. Is this correct? Should there be anything I ask for or anyone I should be talking to before we take Mum home? Many thanks,
Hi, We have been told my dad who has cancer taking over his body…..primary prostate, spread to bones sternum and femur, liver, lungs, neck, spine and spinal column. He was managing fine until Wednesday last week. He’d driven his car, been shopping and looked after himself and the home. Wednesday he was in pain in his chest, tried to get some pain relief, collapsed and to cut a long story short ended up in hospital, will never get out of bed again and will need nursing in bed. His cancer had spread really fast and had caused spinal compression. His cancer taking over has made it not practical to do anything about this compression and so he will spend his last weeks bedridden. His quality of life is now deminished. He has qualified for fast track continuous health care and will be transferred to a nursing home. I have been told that they will review this in 4-6 weeks. Is there a possibility they will take this off him? My sister and husband were taken into a room last Friday and told that dad had days to live. Today as they are preparing him for discharge they came – 2 doctors and a student nurse taking down what the doctor told us. He said that dad had more than days, could be weeks. They didn’t know. This has been horrendous. Told he had days and it would be this week and now we are fighting to get him nursing care. Dad has all his marbles, knows he’s dying and is so brave.
My friend for whom I have power of attorney was discharged without my knowledge or my consent. I sent an email to PALS but would you believe it I am still waiting for the response! Below is the extract of my email:
My friend… who has advanced dementia went to emergency assessment unit on Friday 18th November and although I had asked to have knowledge of discharge and was with her on Sunday 20th November, I was told nothing and not even given notice from my home later on and Miss XX was sent away without having had the NHS Continuing Healthcare and NHS-funded Nursing Care which I had required to be performed.
As attorney I was given to believe that the request would be respected but her discharge was very underhanded without my being informed. That is not acceptable! The wishes of Miss XX to have me as her attorney in any of her medical/health related issues should be respected even by doctors. I had seen an occupational therapist who was going to suggest for Miss XX different helps but she did not have any chance to make true her suggestions as Miss XX was just removed as quietly and quickly as possible.
I had several attempts at writing letters (recorded delivery) and emails to the CCG but nothing has happened. Eventually I threatened to have Ombusman involved and I did get an answer explaining that there had been some “administrative error. The CCG ensure all requests for assessments are acted upon.”
Now we should have an initial Checklist done at the Home (care not nursing) where my friend resides. I have lots of doubts for my friend to be eligible as she has already been fobbed by hospital…
Chantal – be sure to quote the Care Act: http://caretobedifferent.co.uk/care-act-2014-helps-you-with-nhs-continuing-healthcare/
My 81 year old mother has been in hospital again, five weeks duration to date, and only due to myself having researched her condition/s extensively so as to be able to ask the right questions to registrars and consultants. I had to use the PALS service to get that!
At a meeting with the Ward Manager (who informed me he had been nursing for c.33 years now), I asked about a requirement to complete the DoH Continuing Healthcare Checklist, us being informed and our input. He was very vacant and said he wasn’t aware of such a form. He thought I meant a TEP at first, then something else, then finally he said he thought I meant the discharge form they complete.
I explained mum had had a previous Checklist form completed 15 months earlier following another admission in the same hospital, and what it contained. (At that time mum was living away from us and had become non-compliant with meds due to basically being worn out and stressed caring for my stepfather (who had advanced dementia) and becoming forgetful on her own part. I was trying to get a 15min pop in visit night times for a meds check/prompt in addition to the three reablement visits by ASC, which health agreed to fund in the end but for only 6 weeks).
Cutting a very long and arduous story short, it emerges that for the current situation, the “Checklist” is actually attached to the hospital’s “Discharge Tool Form” and gets completed routinely by who knows who! I find this worrying as a) you have no input b) you are not even informed c) permissions are not sought d) how qualified/competent is the person completing it d) effectively the hospital has “done its bit” and so would make any challenge more difficult once the form has been done and the patient dismissed.
I can see mum is deteriorating and I believe will qualify for full assessment now as she will/should do via a Priority score in the domains, if nothing else. However, I see a repeat of a previous Social Worker comments saying she “won’t qualify just for that. You have to be really sick to get Continuing care. Some cancer patients don’t even get it, because there just isn’t the money or the service providers out there to deliver it”.
Mum has made it perfectly clear she does not want to go into care and wants to die at home when the time comes, not in hospital or a care home, if at all possible. I have given up my job recently to facilitate this and to give her the TLC she deserves. (After watching the fiasco of ASC through its Early Intervention Team trying to facilitate reablement and ongoing care packages three times now, its local Team Leader’s barbaric approach to accurately recording mum’s needs, bullying approach to financial assessment, including telling us that she needs to do so even before Health will look at mum’s needs, it was the best way forward).
My main concern now with a pending discharge is ensuring that the Checklist routinely completed for every discharge they do, as per hospital procedures, is done accurately with detailed diaries etc if this likely to be used as an assessment by anyone. Have I expressed that concern adequately as I’m not good at putting things across very well? Any advice welcomed. Thank you.
The hospital’s process for completing the Checklist is flawed – to say the least. The previous social worker’s comments are ludicrous, too! If you haven’t already read Bernie Crean’s article on the Care Act, Lesley, I would recommend it, as it will give you some ammunition to get things done properly right at the start: http://caretobedifferent.co.uk/care-act-2014-helps-you-with-nhs-continuing-healthcare/ Be sure to read the comments underneath, too.
My Aunt has been in care for eighteen months suffering from now quite advanced dementia, double incontinence etc, during this time she has been paying for care.
Unfortunately she is now in hospital after suffering from a mini stroke, please can you kindly advise is this also the correct time to ask about having an assessment for Continuing Care done for her,or should I wait until she is comfortable back in her care home, I don’t want to delay her return home but would like her to receive what benefits are due but not at the loss of any comfort she receives in care, I just want to so what is best for her. Thank you for all your info on the web.
Kindest regards, Debbie
Debbie – yes, definitely make sure the Continuing Healthcare assessment process is carried out before your aunt is discharged from hospital. The care authorities have a legal duty to do this. This will help: http://caretobedifferent.co.uk/paying-for-care-between-hospital-discharge-and-funding-decision/
Is it true that all dementia patients should have the initial Continuing Healthcare Checklist assessment before leaving hospital? My aunt has been in hospital for about 8 weeks with a UTI and now is in a care home and has been told she will have to sell the house as they can not organise care at home for her as she needs 24 hour care. But the council do not know if she had a Checklist done when she left hospital?
Hi Janice – it doesn’t matter what a person’s diagnosis or condition is, i.e. it could be dementia or it could be Parkinson’s or MS or anything else for that matter. What matters is that everyone who needs ongoing care is assessed for Continuing Healthcare before they are discharged. This include people who may have dementia. The diagnosis is irrelevant in this respect. Your aunt should certainly not be means tested or told to pay for care – or indeed pay a penny in care fees – until the assessment process has been properly carried out.
Mum had a CHC Decision Support Tool (DST) assessment, the outcome of which denied her fully funded care, but did deem the Funded Nursing Care (FNC) was appropriate. This was almost 6 weeks ago and no one is willing or able to provide a copy of this assessment to us. We do not think she was rated fairly according the notes my brother made at the time, nor from discussions with nursing staff, nor from our own observations. The Discharge team has misinformed us on several occasions, even saying some brief notes described as a Determination of Needs are her Care Plan. Other health professionals say these notes are of little value professionally and do not constitute a Care Plan – although interestingly the notes do say she needs 1:1 care at all times. Mum is supervised on a 1:1 basis throughout the day and her hospital bed is in view of the ward desk area as she is not aware of the risk of harm to herself by trying to get out of bed to ‘go home’. She barely sleeps at night, is often distressed, violent and aggressive, hitting, spitting and screaming; at other times she can present as a sweet old lady who just babbles nonsense. She is unable to walk unaided, and is assessed as having a high risk of falls which is why the hospital have someone sitting with her all day long and at night whilst she is awake. The LA team is heavily promoting a local nursing home which I did not like, and, I have grave concerns that she will fall, and staff there will be too overstretched in their other duties to be able to keep an eye on her as much as it is currently needed. Another dementia home has assessed her and given up a price exceeding £4000 per week due to the 24 hour 1:1 care. Do Mum’s conditions sound as though this is just a social care need to you please? We are under pressure to move her into a home, but have said the high costs, and lack of CHC letter and assessment means we feel we cannot make decisions yet. She would be a self-funder if CHC is not provided and the LA team know this. She is also doubly incontinent and is not deemed to have mental capacity to make her own sound decisions. Any thoughts most welcome. Your book is fantastic Angela, but I could not find a scenario like this to answer my concerns.
The CHC team must provide copies of assessment notes – not least because those notes are also used to inform your mum’s care plan. It sounds as though there has been a shambles of a process in your mum’s case, Pamela. This is sadly very common – that people are not properly assessed, that care needs are underplayed and that people are put under pressure to leave hospital before things have been done properly. Refuse to allow your mum to be discharged until you receive copies of the assessment notes and until there has been a local dispute resolution meeting; you are entitled to receive these notes – indeed, you cannot easily appeal the funding decision without them. Maybe that’s what the CHC team is banking on. The NHS has failed to provide adequate information even for your mum’s essential care plan, and this could also be a safeguarding issue. If the assessment process has been flawed, insist on it being done again before she is discharged. I can’t say whether or not your mum’s needs would secure CHC – it requires an in depth look at the whole picture of her day-to-day needs and risks. You can appeal the current CHC decision.
My mother (age 90) had a stroke just before Christmas whilst staying with us – she lives 140 miles away. She has Dysphagia as a result of the stroke and after 4 weeks in an acute stroke ward is now in a stroke rehabilitation unit in another hospital where she is receiving excellent care. She is making a recovery, albeit very slowly and has limited mobility as yet. The first hospital told me if she is discharged to stay with me she will not be entitled to any care support package as she will be “out of county”? Although the aim in the long term is for her to return home with my father who is 89 and has very limited mobility I can foresee in the short term they will both be with me for a while. Is this information correct – is she not entitled to any support at home just because she has been taken Ill away from where she lives?
Hi Christine – is your mother going to need full time care? (This can be at her home.) If so, she needs to be assessed for NHS Continuing Healthcare. This funding, should she get it, can move with her. Local authorities, on the other hand, tend to make more local decisions. Regardless of where she is, though, she shouldn’t be discharged from hospital into a situation where she is unsafe, vulnerable and/or lacking in some kind of care plan. Your specific question in relation to the local authority may be something that AgeUK can advise more thoroughly on.
My father has been in hospital since 01/12/15. He had gone back in after complications from his previous stay from 20/10/15 to 09/11/15 which was due to him suffering a third stroke. At the time of his second admission he had multiple chronic illnesses, diabetes, severe neuropathy in his legs( preventing him from walking) and hands, heart condition, dementia, poor vision, total deafness in right ear and 30% hearing in the left. He has been a long term self catherteriser which had become a problem due to lack of feeling in his hands and was borderline double incontinent. We found it increasingly difficult to cope and finally my fathers health got the better of all of us. We requested a CHC assessment and had all checklists completed by 17/12/15. The MDT meeting took place on 22/12/15 and everyone agreed that he would/should qualify for funding. Today, 15/02/16 we are no further forward. The CHC appear to be blocking the request going to the CCG as they believe the paperwork has not been correctly “ratified”.
My fathers health has deteriorated to such a degree now, physically /verbally abusive, double incontinent, faecal smearing, severe distress, totally confusion and unaware of where he is, pneumonia and aspiration, that the Dr and sister are going to Fast track him. We cannot help but think this whole situation could have been better handled. Our family feel utterly let down and distressed by our treatment by the CHC. It’s all political smoke and mirrors now. Everyone needs to clue up and start fighting for what is right. This is about the care of human beings….not financial budgets and misinformation.
Thank you for the help you give to people, we definitely need it.
J. Whiteley
Hi Jarmila – thank you for your kind words. Your situation sounds so frustrating, and you’re not alone in facing such unacceptable obstruction and delays on the part of the CCG. You may want to use some of the arguments in this article: http://caretobedifferent.co.uk/can-ccgs-overturn-nhs-continuing-healthcare-eligibility/
My father was moved from hospital to the Bristol Brain Injury Rehabilitation Unit which is part of the Huntercombe group and is NHS funded for 6 months. We’ve been told he won’t be able to come home due to the injury from his fall being so severe that he can’t make new memories, therefore can’t relearn how to walk, make decisions etc, worse of all is he thinks he still can, so has to be strapped in to his chair. Reading this site, which is very helpful, I don’t know whether to read on as him being in hospital or not. I presume as he’s still NHS funded to read it as in hospital?
One other question, is it best to refuse to allow Local Authority financial check until we’ve gone through first stage of applying for Continuing Care?
Thank you
That sounds very distressing for your all, Sarah. While your father is in hospital, his care and treatment is automatically funded by the NHS. However, if he is going to be discharged into ongoing care, e.g. in a care home, he must be assessed for NHS Continuing Healthcare (CHC) funding before that happens. You’re correct that he shouldn’t be means tested or have any questions asked about his money until the CHC assessment process has taken place and a proper decision has been made.
In compiling a Continuing Health Care assessment, the question is – at what point do ‘social’ needs become ‘health’ needs? If an elderly person is blind and unable to walk unaided, does that constitute a ‘social’ need because they are unable to interact with others, and thereby the NHS can avoid responsibility, or a ‘health’ need due to their infirmities, in which case the NHS should take on aspects of their care?
It’s the whole picture of need that counts, Andrew, rather than specific individual needs. This may help: http://caretobedifferent.co.uk/difference-between-a-healthcare-need-and-a-social-care-need/