NHS Continuing Healthcare at home – how much care should be provided?

NHS Continuing Healthcare at home – how much care should be provided?

NHS Continuing Healthcare at homeToday’s article charts a typical scenario where the NHS agrees to provide NHS Continuing Healthcare at home – to fund for someone in their own home – but the funding is not enough.

What usually happens is this:

  1. In the NHS Continuing Healthcare assessment process the NHS agrees to provide full funding for a person’s care.
  2. However, the family then receives notification that this supposed ‘full’ funding will only cover a capped number of hours per week – not the full time care that is actually needed.
  3. It means the funding may not be enough to provide for all the person’s assessed care needs, and the family is left in a panic, not knowing what to do.
  4. What’s worse is that Continuing Healthcare funding cannot be ‘topped up’ by anyone else.
  5. It means the person needing care may be left vulnerable and without essential care.

There is no cap on NHS Continuing Healthcare

Sadly, it seems increasingly common for local NHS commissioning units to try to get away with providing less care than is needed for people at home. Many say that only a certain number of hours per week will be provided, instead of full time care.

This approach is, however, flawed.

The NHS may try to limit care provision at home as a way of forcing a person to agree to go into a care home – because it can be cheaper for the NHS.

No matter where the care is provided, NHS Continuing Healthcare must cover ALL assessed care needs; there’s no cap on NHS care in this respect. If the NHS leaves someone without the full care they need, they are effectively putting the person at risk of injury and neglect. The NHS should also not simply rely on members of the family to make up for any shortfall in care provision.

Continuing Healthcare funding cannot be ‘topped up’ in the same way as local authority care (LA) – Continuing Healthcare should cover all assessed care needs in the first place.

This paragraph in the National Framework guidelines confirms the point:

Pages 14-15, paragraph 33…

‘To assist in deciding which treatment and other health services it is appropriate for the NHS to provide under the 2006 Act, and to distinguish between those and the services that LAs may provide… the Secretary of State has developed the concept of a ‘primary health need’. Where a person is assessed to have a ‘primary health need, they are eligible for NHS Continuing Healthcare… and… the NHS is responsible for providing all of that individual’s assessed health and social care needs…

If the NHS is providing care – even if through a subcontracted agency – it is responsible for that care. If you’re faced with a situation where the NHS is not providing enough care through NHS Continuing Healthcare at home – and where the care provision does not meet all the assessed care needs – here’s one thing you could do:

Write to the Head of Adult Safeguarding (usually based within the local authority). Head your letter ‘Serious safeguarding alert’ and mark it urgent. In the letter highlight how your relative is at risk of injury and neglect and then copy the letter to the Head of the Clinical Commissioning Group and also the Head of NHS Continuing Healthcare.

What’s your experience of receiving NHS Continuing Healthcare at home?

Continuing Healthcare funding and choice of care provider/care home

87 Comments

  1. Rebecca Anderson 2 months ago

    My husband has just received his DST which recommends he be granted full CHC. He currently lives at home and needs someone with him all the time, we are covering this as a family but can only manage it in the short term. The summary states “Mr A requires a safe and 24 hour supervised accommodation with intermittent access to carers”. What does that actually mean?! The DST acknowledges that he needs 2 carers for transfers, continence care etc.

    • Jodi B 2 days ago

      Article 8 of the ECHR state that everyone has a right to a family life, i.e. he should be supported to live at home as he has been. CHC has to meet his needs whatever they are. They also have the right to promote best value but if on the balance of his other needs and rights it doesn’t count for much. So for example he may be able to get more responsive care or more cost effective however if it is going to be detrimental in other ways then they have to meet his needs at home.
      Plus they cannot compare home care costs vs average nursing home costs, it would have to be an individual price of the cost of his care in a nursing home, assuming that because he has been awarded fully funded his needs are more complex than your average nursing home resident. Hope that makes sense.

  2. Ann 2 months ago

    I am very unhappy with my mum being in a Nursing home – more importantly she is very unhappy living there. I want her home but would I cope. Reading comments from others in a similar situation I would need 4/5 visits and night time cover or I wouldn’t be able to cope. I feel so impotent and unable to know what to do – I’m so upset, frustrated and feel so guilty that she is unhappy – where do I start to get her home.
    Thank you – Ann.

    • Care to be Different 2 months ago

      Hi Ann – I have posted this on our Facebook timeline – there are several comments which you might find helpful. Regards

  3. sam 5 months ago

    Hi My mum had a stroke 7 weeks ago, she is still in hospital. We went to an Multidisciplinary Team (MDT) review meeting which turned out to be a discharge planning meeting. The MDT said mum needs to go into a nursing home as needs full time care and the social worker who had not even met mum just agreed with them even though she had no knowledge of mum. SALT said mum does not have understanding or capacity which is wrong as she understands us and is very clear she does not want to go into a nursing home. They have not done a capacity assessment and we feel we are being pressured to do something which we know will have a negative impact on mum. MDT said she would not be able to get a big enough care package to remain in her own home. Continuing Healthcare (CHC) Checklist has not been done but I have read that if it is done and the person is entitled to a full CHC assessment then ‘the hospital cannot start delayed discharge procedures.’ Is this true ? I am going to push for the checklist to be completed in the hope that it means they cannot force discharge which would allow more time on the stroke rehab unit as 7 weeks is not long especially when mum couldn’t be assessed in the 1st 3 weeks because she was very unwell and since then has had infections, delirium and was wiped out for a week after they put her in a standard wheelchair on 3 occasions after saying she could not use a standard wheelchair. Once mum goes into a care home we will not get her out as the powers that be will make it difficult. I am going to fight this all the way but could do with some tips on where to start.
    Thanks

  4. Goose 10 months ago

    My Dad is currently in hospital, he has very poor mobility as well as other health issues and cannot come home until we have a live in carer in place. My Mother has Alzheimers so is unable to do any care and in fact needs care herself. We have contacted a care company to provide a live in carer as we want to get my parents back together in their own home. It is very distressing for both of them being apart. We have asked for my Dad to be assessed for NHS Continuing Healthcare whist he is in hospital. My mum will also need to be assessed. If we employ the live in carer and start paying before the result of the assessment will this cause us any issues?

    • Vicky 10 months ago

      Hi Goose,
      Problems I can forsee are timing – it’s hard to get NHS Continuing Healthcare (CHC) – may need to battle a bit unless he’s fast-tracked, and even then… When we got CHC for mum, they limited the care offered anyway (she needed 24 hr palliative due to end of life from cancer but they only offered 4 visits per day max so we’d have had to provide care in some capacity around this anyway) the care company we wanted told us the NHS would use their own care companies due to cost so if you do get it you may have disruption if they’re settled or change of routines. Not sure if you having 24 hr care in place already will influence their decision or not, the qualification is both strict and sketchily adhered to depending where you are, your dad’s health anyway. Maybe others with similar experience to you will chip in. I wish I’d have put care into place, got her home and then thought after but we were on very borrowed time which might not be the case for you.

      • Goose 10 months ago

        Thanks very much Vicky, you are right I think we will have a battle on our hands but we will not give up. I think we will have to pay at least for a while just to get him home with my Mum. He is 94 so time is somewhat limited, though he is not on end of life care at this point. So if they decide he is entitled to 4 visits a day but we want live in care do they insist of providing the care or can we have the monetary equivalent to put towards the live in fees do you know?

        • Vicky 10 months ago

          There is a personal budget type payment option, though I don’t know the ins and outs of it as mum didn’t qualify for some reason I can’t recall, maybe worth looking into https://www.nhs.uk/NHSEngland/patient-choice/personal-health-budget/Pages/about-phb.aspx Our authority used various agencies once Continuing Healthcare (CHC) was awarded. They called them weekly to arrange visits per week, so have their lists of suppliers. You can normally find out who they use and check if you’d use them so if it came to it you could have a simple transfer from self funded to CHC. Guidelines state they’ll attempt to make it easier in this situation so it must crop up often that someone passes from social care to CHC. We were thinking it was easier to just totally sort our own carers out then argue after to keep them after if you get the decision.

          • Goose 10 months ago

            Thank you very much Vicky!

  5. Salter 12 months ago

    We are waiting for my Husband to be assessed on Monday. He has Parkinsons and cannot stand or walk. We have been told we are going to receive a hefty bill, with no NHS ongoing Health funding. How do we stand if we refuse to pay, until this is sorted out?

  6. Lynda 1 year ago

    Lorraine if they have fast tracked your mum and it was accepted the district nurses need to contact the palliative care centre and request night sitters. You may not get 7 nights but you should get 4 at the least if they have the staff available x

    • Lorraine 1 year ago

      Thank you so much Lynda I really appreciate that. I will get in touch with them.

  7. Lorraine 1 year ago

    Hi
    My mother has spent the last 5 weeks in hospital and has now been fast tracked for continuing healthcare. We have been told that she is at end of life and ideally should go into a hospice or a nursing home both of which she refuses point blank to do. As she is of sound mind we have to comply with her wishes. She will have district nurses 4 times a day for all personal care and medication and carers 4 times a day for meals etc. The problem is that she needs someone with her during the night and we have been told this will not be provided even though the hospital team have advised this. This is causing a huge problem for the family as my sister is having cancer treatment so can’t help and my brother lives over 3 hours drive away. I my self am over an hours drive and I am 63 years old and have a daughter with active crohns who I have to look after when she is ill and who lives over an hours drive away. We now find ourselves in the position of having to pay for night sits 4 times a week and because of the huge cost my brother and I are having to do the other 3 nights. This is going to and has taken a huge toll on our own health with all the travelling back and forth as well as everything else that goes with it. I myself am suffering from stress and anxiety because of all that has happened. I find it extraordinary that they will provide this during the day but you are on your own at night. Is there no one that will provide this care when the medical team have said she needs it? They have said she just needs someone there at night as she is on permanent oxygen. Any help would be appreciated as we are desperate.
    Thank you

  8. Jackie Reeve 1 year ago

    My 93 year old Aunt paid for Home Care of about 2-3 hours per day. However after falling out of bed several times, is unable to get meals and her short memory very bad, Social Services decided that she should go into a Nursing Home. She has now been there for a few days and we are wondering if she would qualify for a Continuing Healthcare assessment?

  9. Lorna Cooke 1 year ago

    My mother has come to live with us after the care home said they could not cope with her. She was placed there after being detained under section 3 for several months. She has lewy body dementia, high blood pressure, diabetes and was refusing to take medication. 

    She lived in extra care sheltered housing before being sectioned, and we have been told she needs constant nursing care and should go into a home. She is receiving CHC funding for carers except at night which the family are currently covering, but who work full time. We want her to be given accommodation again where the carers can go in day and night as the family are not coping and who are exhausted. My daughter sleeps on the sofa after giving my mther her room. The house would need to be adapted on the ground floor to properly accommodate my mother, and we would be happy to have her with us permenently Q if the space was adequate. We are getting no financial help with my mother’s needs while she is here but we really want to know if we can insist on accommodation similar to her previous extra care sheltered flat with carers going in with activities, such as going to daycare both of which are being refused currently.

  10. Nat 2 years ago

    Hi The above is happening to our family right now. My 70 year old mum is currently supplementing the Continuing Healthcare (CHC) care package. My Dad has very high, complex care needs and lives at home with my Mum. The current NHS package is 4x double ups per day and 3 x nights per week. I have asked the CHC for to up the care package to 24/7 as Mum is absolutely on her knees providing care for Dad every single hour that the carers are not there.
    Mum can be awake with Dad from 7pm in the evening until 6am the next morning and then be looking after him all that day.
    Apparently ‘family are expected to plug the gaps’ and our family is already receiving the ‘maximum’ care package!!!
    I am tempted to do as is suggested in the article and contact Safeguarding, however couldn’t this backfire on us and give them a reason to put Dad in a home??

    • vicky 2 years ago

      Hi Nat,
      I feel for you, just like us apart from my mother lived alone but still, we would have been expected to plug the gaps and there was no amount of talking to them that would alter their standard parroting of that’s the maximum care offered. If challenged the staff in the hospital would offer “even if it was authorised to provide 24 hr care there wouldn’t be enough carers to fill the need” !! Very frustrating. The CCG were evasive and defensive and every single member of staff involved closed ranks.
      What to do – I got a freedom of information report of people receiving 24 hr care in our area which is something you can do to back your case up. There were more than 1 “less than 5” in our report back from the NHS.
      You could push for safeguarding and report them anywhere you can. We didn’t as mum had as they call ‘varying capacity’ and we knew they would force her into a home if we pressed hard. We also didn’t have enough time to do this as she was dying. (she died before she could be discharged).
      Our plan was to take out finance and employ our own top class carers to fit around the care they offered leaving us less time to have to step in, which is against their own rules believe it or not. We were even readying to use the same care company they would provide and have them bill us for the extra. We were given permission to do this (this whole situation contravenes their own rules as they are obliged to provide the care your loved one has been assessed to require, no tops ups should be needed or allowed). Our plan was to fight the big battle after mum had gone and legally reclaim all the money we had spent on extra care which I would have done.
      I hope you can push them to step up and ease you and your mum’s burden. I’d be taking into consideration capacity issues, and collating all your evidence.

  11. Rachel Burchell 2 years ago

    HI,
    My Mum, suffering from Parkinson’s and dementia the last 9 years, has recently been awarded Continuing Healthcare funding – although it took 6 months rather than the 28 days, due to no-one wanting to take responsibility (trying to get retrospective too at the moment).
    One problem I have is I have a phone number to claim back from December 1st care home fees, which she pays, however I have rung over the past two weeks the number given and left messages but no contact back. Where do I go next to get through or get this sorted?
    Also, I have real issues with the care home she had to go into a year and a half ago because of her needs, and fact I have a family still at home and job, and couldn’t see how I could care for her complex needs. I am in the process of making an official complaint after months of trying to get the quality of care I think she needs. I am wondering if this is the best place for her.
    I am thinking aloud now, but would I be able to buy a small house or apartment with her money (I have POA in both areas) and then CHC fund live in carers, with me supporting? It seems they prefer not to, reading the comments above, but I am worried my Mum’s emotional, physical and social needs are not being met. It is complicated that she has extreme issues with communication though she can understand things mostly. Any advice/comments/thoughts would be really valuable. Thanks

  12. Lynda 2 years ago

    My mother has 2 carers 4 times a day, lives alone and is bedbound. We requested an assessment from Social Services in September 2016 once her savings fell below £22,000. Following this assessment Social Services said they would fund £250.00 per week towards her care however they recommended a Decision Support Tool (DST) and said they would wait for that outcome first. She was awarded joint funding with CHC agreeing to fund 23 hours per week of her care. Social services informed us that due to the remaining care being less then the “assessed” £250 she would not received any funding from them. My mum has had not payment from anyone but this is expected to be sorted with the next 4 weeks by a personal health budget. My mums finances have now gone below £12,000. Should Social Services be paying toward her care? Many Thanks in advance

  13. Vicky 2 years ago

    My Mum’s in hospital, has 6 weeks or so to live, we’ve been told she’ll be Fast Tracked. Had a fast track meeting to fill in the application form with my sister which they (palliative care nurse and community liason nurse) were trying to figure out a care/discharge plan at the same time. They were spouting nonsense information by saying mum needs 24 hr care/supervision at home and they would only provide 4 carers per day plus a night nurse but “family would need to be there to fill in the gaps in the day and be present fully during the night” my sister pressed and pressed that this was not an option as we both work full time and they were suggesting the only option was a nursing home which mum definitely doesn’t want. They were unresponsive to hospice care options or, respite options to fulfil a home care package. They said there was no other option. So much so that my sister became too upset to continue and left to compose herself after expressing her disgust. When she returned an assessor had left.
    I called the CCG to check on the fast track funding and they’ve received no application from the hospital who on query say that’s because my sister left the meeting. Another formal discharge/fast track meeting has to be arranged to apply for funding!!!!!
    The CCG confirmed to me that on receipt of the application, they’ll instantly contact their appropriate care agencies to put the care package in place (no mention of limits or caps, only concerns for a safe covered discharge). We’d be happy with a compromise of some care homw with weekends at home or a personal budget but what can we do if the meeting follows the same route of them inisting this is the way it is? We don’t want to agree to a home care package that we have to give up our jobs for as we can’t! We’re at the end of our tether and our mum is horribly depressed and bored in hospital. She misses her neighbours and dog terribly.
    They also have said she has capacity to make small decisions not complex ones (she’s fully communicative and only has bouts of confusion) but they say she has to have another capacity test before the next meeting. We don’t want her forced into a care home, she’d be distraught.

    • Angela Sherman 2 years ago

      That’s so distressing, Vicky. The Fast Track sounds entirely appropriate in your mum’s case, and this should be actioned immediately after any Fast Track referral. Families members should not be expected to provided the actual care needed. If funding is not put in place on a Fast Track basis, send all care bills to the CCG or to the Head of Adult Care at the local authority. In addition, make sure they carry out any Mental Capacity Assessment properly: http://caretobedifferent.co.uk/mental-capacity-assessments/

      • vicky 2 years ago

        Thanks for that Angela, when this is all over I’ll buy copies of your book for my 40 year old buddies all no doubt heading for this trouble!
        They’re holding her to ransom. haven’t made the referral but said they will, no problem. Will only do this at the same time as the care plan/discharge meeting where they try and force us to say we’ll provide cover for the gaps in care otherwise it’s unsafe to discharge and therefore not a safe care plan. And without a care plan package agreed, they can’t apply for a care package from the CCG!!!!! so we don’t finish a meeting as we’re attempting to hold them to the fire by saying this is the framework procedure! you apply with care needs, they approve and implement and then discharge. Nope. This CCG only grants 4 per day etc etc and so we can’t apply unless we have a safe care plan to apply for and so on and so forth. Since then mum has fallen and is 100% more agitated and teary.

  14. debbe 2 years ago

    Thank you Angela I will look through this , your site has helped so much . Also wondering if dad does get chc will it still only be for call outs a day to house from nurse as this is what I’ve been told ?
    Thanks deb

    • Angela Sherman 2 years ago

      Debbie – the degree of care that is provided should reflect your dad’s needs. If he needs full time care, then that’s what should be provided. If it is for any reason inappropriate or unsafe for him to have that degree of care at home, then you may have to consider other options (e.g. a care home), but the actual Continuing Healthcare funding should cover all his assessed care needs, whatever degree is needed, and it covers care in any setting.

  15. Debbie 2 years ago

    Hi, I would never of known about chc only for you, so thank you so much. My dad had a severe stroke 12 weeks ago now, hospital want him out and have given us 24 hours to find him a nursing home as he needs care 24/7. They say he will be eligible for chc but have not done a checklist or assessment they say the home will do it as they don’t . We really want him home but they say he won’t get the care he needs at home, even if he is awarded chc he will need two carers all times. We are heart broken as we want him home he wants to come home , it’s making my mum ill with worry. We really need someone fighting our corner to get him home with full care that he needs, right now we feel like we’re just hitting a brick wall all the time with no help.
    Thanks , Deb

  16. Patricia 2 years ago

    Hi
    I’ve just discovered that NHS Continuing Healthcare (CHC) at home also covers “any household costs directly related to care needs” & would like some advice on the costs that are covered by this, & how I should proceed with claiming these costs. Mum has been receiving full CHC funding since a hospital stay in 2012, when she was discharged home with a profiling bed, airflow mattress & hoist – all electrically operated equipment, so can we claim for the extra electricity used? I’ve been mum’s live-in carer for 7 years & her care package with CHC was based on a 2 carers 4 times daily care package for personal care. A year ago she went into a nursing home for a respite stay & CHC decided to keep her in there claiming that “her care needs are best met in the care home” but they’ve not given me an explanation of why that might be. Mum has advanced dementia & she stated on her LPA that she wanted to be in her own home with me. I have sole POA & have fought for a long time for mum to come home.
    Finally the panel agreed yesterday that mum can come home, but with a live-in carer (isn’t that what I am?) & a 2nd carer to come 4 times daily for personal care. After the CHC assessor had done mum’s review she asked if anyone had mentioned a live-in carer to me & I said it had been mentioned briefly once but not in any detail.
    I asked what would happen if mum’s pad needed changing & the live-in was here on her own, & was told she’d ring for the local rapid response team to come & help. I know from experience they’re unlikely to come out for a pad change, as they give priority to people who’ve had falls, etc. I’ve been told conflicting things about mum’s care needs. I asked if things could be reviewed as the care package isn’t based on mum’s care needs. They said it can’t be changed as it’s based on what the CHC assessor decided would meet mum’s needs.
    No-one discussed with me beforehand what having a live-in carer would involve, & I’m angry because it does feel as if I’m being bullied into having one. I don’t want to risk the panel changing their decision about mum coming home, but not sure if I should ask for a ‘best interests’ meeting.
    My head is spinning with all of this & any advice would be much appreciated.

    • Angela Sherman 2 years ago

      Patricia – the costs that should be covered under CHC for someone at home are those directly related to the provision of their care, taking into account all their assessed care needs. You’ll find more on this in the National Framework guidelines: http://caretobedifferent.co.uk/continuing-healthcare-assessment-guidelines/. If the CCG is not providing everything that’s necessary, they nay be negligent. If your mum lacks the mental capacity to make the specific decision about where she wants to live, there may need to be a Best Interests meeting. (Note: a Mental Capacity Assessment is not a general assessment of cognitive ability; instead it’s about a person’s capacity to make a specific decision about a specific things at a specific time.) http://caretobedifferent.co.uk/mental-capacity-assessments/

  17. Mrs Ali 2 years ago

    Hi
    Just need some advice my elderly cousin 89 has come to live with me.She has heart failure and day by day her mobility is getting she can’t walk more than a few yards and she out of breath and that with aids. She has lot of falls so now I have to take her to toilet and wash , bathe her and dress her.
    She cant do anything herself.
    After 7 months OT is coming out to see us, don’t know what expect. Her own home is empty she’s not sure what she’s doing with it. Will she be entitled to CHC? She has started to get AA, I have taken 2 weeks off work to support her after her constant falling.
    If I give up work what help would I get?

  18. Patricia Hall 2 years ago

    Social care has just told us they are taking back dad’s budget for his day and night care he can have 4 visits a day and he will go into a home on the 11th December . We are asking for a Fast Track Continuing Healthcare assessment as dad is in the later stages of dementia and Parkinson’s which will take time to organise but they just said dad will be in a home 11th December.

  19. Liz Bailey 2 years ago

    Hello, I have been looking through your website for the past week and found it really informative and helpful – brilliant in fact. I would be very grateful for some confirmation that the steps I am planning to take will lead in the right direction. I apologise, in advance, for the length of this message.
    Following my mums death in April 2015 my father became even more frail and experienced a series of increasingly serious health issues, including a mild stroke and a fractured hip, regular bouts of pneumonia, etc., which led to frequent hospital admissions between May and December 2015.
    In November 2015 the hospital started planning for his discharge and at this stage I insisted that a Decision Support Tool (DST) be completed for my father. I was given the impression, by the onward care nurse that the CCG would consider my father’s needs were not ‘unpredictable enough’ to be considered as eligible for CHC.
    We, including my father, were adamant that the best place for him to be discharged to was his own home. This took place at the start of January 2016, once he had been provided with all the necessary equipment (e.g. a profile bed, etc.) and with funding from the local authority (LA) in the form of Direct Payments (DP) – but there would be no night cover and so there would be 3 to 4 hour periods when he would be completely on his own, unable to move from his chair. We were told that the amount of social care funding (DP) allocated was the maximum available for an individual in their own home and that the only other option would be for him to go into residential care, if the package being provided was not adequate for his needs. At this point my husband moved in with my father to provide consistent care overnight and in between care visits. We have been managing in this way ever since, with my brother or I taking turns to give my husband a break when possible (my family home is 150 miles from my father and my brother lives 200 miles away).
    In January 2016, following the submission of the DST, I received a letter stating that the “completed DST Checklist had been reviewed by health professionals working for the CCG and they had confirmed the positive checklist outcome” and that, “in line with the national framework for CHC funding , an onward referral for an assessment of eligibility had been made”. The letter also says that cases are allocated in order of “clinical risk, health and environmental risk and that due to the process of prioritising the length of wait is variable; dependent on the individual’s clinical needs”. I have heard nothing since – just under 10 months ago now.
    In the meantime my father has been living at home. There has probably been an decrease in cognitive function, which brings new challenges and needs. He continues to require assistance with all tasks throughout the day and night. I spoke recently with a Social Worker from his LA about additional funding to take over the care being provided by family members. I am told my father is currently receiving the highest rate of social care funding. The Social Worker advised that his needs are now more health than social care (which I do agree with) and therefore I should seek a re-assessment from his GP and the Community nurses.
    My plan is to contact the CCG to ask for the “onward referral for an assessment of eligibility” to be set in motion. Ideally my father would remain in his own home because this is where he is familiar with and feels safe. With CHC funding we could organise and fund care that did not rely on daily family in-put. I had been led to understand that CHC funding would only be available if my father were to move into a nursing home. Also, if, in the unlikely event that it was agreed for him to remain at home and receive 24 hour care, we would have to accept staff from a nursing agency and could not use the services of the team of PA’s my father knows and trusts. The information I have gathered from this site suggests that both of these scenario’s are false and that I could expect funding for him to remain at home and to be cared for by carers of his/our choice (we do have LPAs in place).
    Any comments / suggestions or advice would be gratefully received.

    • Angela Sherman 2 years ago

      Liz – the onward care nurse should not have suggested that your father wouldn’t be eligible for Continuing Healthcare (CHC). No one can know that until the assessment process has taken place and a CCG decision has been made. Sadly comments that that of the nurse often put families off from applying. What the nurse should have done was get the CHC assessment process in motion while your father was still in hospital. This is a requirement under the Care Act, and no one should start paying care fees until this has been completed and a CHC funding decision made. See this article: http://caretobedifferent.co.uk/paying-for-care-between-hospital-discharge-and-funding-decision/ and also this one: http://caretobedifferent.co.uk/care-act-2014-helps-you-with-nhs-continuing-healthcare/ The assessment process is supposed to take 28 days. If your father was sent home without a full and appropriate care package and care plan, the NHS could be considered negligent in that respect. If your father’s care needs are now beyond the legal remit of the local authority (LA), the LA is now acting illegally in continuing to retain responsibility for his care. CHC is available in any setting, i.e. it doesn’t have to be in a care home. This will also help regarding choice of care provider: http://caretobedifferent.co.uk/continuing-healthcare-funding-and-choice-of-care-home/ (whether it’s in a care home or at home).

  20. Michael K 2 years ago

    In June my father had a fall at home and broke his leg and had a serious bang on the head. The broken leg went undiagnosed for over a week despite my father continually complaining about the pain.

    To cut a long story short, he has now had the plaster on his leg for over 16 weeks and has now been told his leg is not knitting and a amputation is recommended (he has also got diabetes, leg ulcers, kidney problems and hypertension), the leg is non weight bearing. Alongside this dad has short term memory loss, dementia and can’t look after himself.

    For the last 16 weeks he has been in a home where he is looked after, hoisted as not able to do anything for himself, he is forgetful, and talks very little or babbles. He relies fully on the carers at the home to the extent they even order his food for him as he cant do it himsel!

    Social services and the physio team are now saying his long term care will mean moving back home with carers coming in 3-4 times a day. We don’t want this and think he is better off in a care home, we cannot look after him.

    Can we argue for him to go into a care home or does he have to move back to his house and have carers?

    • Angela Sherman 2 years ago

      Michael – that sounds very distressing. If your father lacks the mental capacity to make the decision about where he wants to be, then a Best Interests meeting may be needed. A Mental Capacity assessment will indicate his capacity in this respect: http://caretobedifferent.co.uk/mental-capacity-assessments/ (Keep in mind that mental capacity relates to a specific decision that needs to be made about something, not a general assessment of cognitive ability.) There’s also a section on Best Interests meetings in the National Framework guidelines.

  21. Dawn 2 years ago

    Hi firstly may I say what a fantastic website this is. My aunt was recently admitted to a nursing home and is CHC funded. However she is desperately unhappy and wants go home. Could her CHC funding be transferred to a 24 hour live in package, and if so how do we go about arranging this? Many thanks Dawn

    • Angela Sherman 2 years ago

      Thanks you for your very kind words, Dawn. The first consideration is your aunt’s safety, but if it is safe for her to receive care at home, you can certainly put this forward. Don’t be surprised if you meet resistance from the CCG, who may consider it ‘more expensive’ to provide care at home. Remember though that Continuing Healthcare funding is available regardless of setting, i.e. it doesn’t have to be in a care home.

  22. Jayne mcneil 2 years ago

    Mum has had assessment for Continuing Healthcare (CHC) and is eligible. She is on the palliative register. She had psp and needs 24/7 care which dad provides. She has 2 hr care a day. The CHC have said they will find 40 percent of her care because the rest are social needs which mum has to pay, if anything happened to dad she would need a nursing home. Is it correct that mum had to pay 60 percent or should CHC pay all her care?

    • Angela Sherman 2 years ago

      Jayne – when a person is eligible for Continuing Healthcare, the NHS must cover ALL their social needs as well. See the National Framework pages 14-15, paragraph 33: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/213137/National-Framework-for-NHS-CHC-NHS-FNC-Nov-2012.pdf

      • Jayne mcneil 2 years ago

        Thankyou for taking the time to reply much appreciated. Mums condition has deteriorated I have telephoned Chc to request a reassessment they have told me because mums joint funded with social services they have to request the reassessment. I have spoke to social services and they are coming to do sssessment next week. In their letter their is no mention on referring to Chc it just says to reassess social needs. I am just being passed from pillar to post. Any advice would be great fully received
        Jayne

        • Jayne mcneil 2 years ago

          Is there a difference between identifying a nursing need on the DST checklist for Continuing Healthcare (CHC) and health need. What I’m asking is what do you need to score on a DST checklist that identifies you as eligible for CHC?
          Jayne

        • Angela Sherman 2 years ago

          Jayne – point them to the paragraph in the National Framework about social care needs being covered too (see link above). If your mum is eligible for Continuing Healthcare (CHC), the NHS must pay. Simple as that. If she has been given a ‘joint funding’ package, be careful. This is when the NHS will say that a person is eligible for CHC funding – but only ‘some’ CHC funding. It means the local authority will means test for the rest. However, there are three vital points to keep in mind here: 1) It is only a joint funding package if the paperwork says it’s a joint finding package;. 2) If your mum is eligible for ‘some’ CHC funding, the question to ask is why are they not funding ALL her care, given that CHC covers both heath AND social care needs. Some health and social care professionals involved in CHC assessments have a woeful lack of knowledge about CHC (because of a woeful lack of proper training), so never assume what you’re told is correct.

  23. Lizzi 2 years ago

    Following a very stressful assesment process,  for my son who lives in supported living , we now discover that potentially he is at risk of being moved into a care home due to the CCG’s local policy, which we were unaware of until after the award ( found by chance on the internet), the local policy states:

    XXX CCG will only consider the provision of  ‘care at home’ where the total cost of providing care is within 10% of the indicative budget.

    We presume indicative budget is based on a care home fee.

    This is hugely worrying. Can they do this?

    PS Thanks for the great advice so far

  24. Patricia Rees 2 years ago

    Hi – my mum has advanced dementia & has had CHC funding since 2012. She lived at home with me as her live-in carer & her personal care being provided by 2 carers visiting 4 times a day. In July 2015 mum came home from a 2-week respite stay with a pressure sore on her sacrum, which was looked after at home with District Nurse visits. In November our central heating broke down & mum went into a nursing home for what was meant to be a short stay while the heating was repaired. The nursing home insist mum has to be repositioned every 2 hours, even after the pressure sore heals – she wasn’t repositioned 2-hourly at home & never got any pressure sores – & now CHC want mum to stay in the home permanently. I’m not at all happy about that. It was always mum’s wish that she is looked after in her own home & she expressed this in her POA (I’m her sole attorney). In January the CHC assessor put forward to the panel a home care package of 2 carers 24/7, but in March this was turned down due to the cost. A Best Interests meeting was arranged for April but this was cancelled on the day because CHC didn’t have anyone to chair the meeting or to take minutes – yes, really! Then the assessor put forward to the panel a home care package of 2 carers 5 times a day (I’ve not heard of 5 visits before) & this was turned down because of the care home insisting on the 2-hourly repositioning. CHC have said mum’s care package can be reconsidered in a few months when her pressure sore has healed enough for the care home to say she can be repositioned every 3 or 4 hours. It doesn’t look like that’s ever going to happen as the pressure sore is almost healed now & the senior nurse at the home told me that mum needs to be repositioned every 2 hours even after it’s healed completely (I suspect the home have a vested interest in keeping mum there). Something I really don’t like is that mum is being kept in her room on her own all the time without the companionship & stimulation that she gets at home. I’ve mentioned this to the CHC assessor but he doesn’t seem that interested. As mum’s emotional & psychological needs aren’t being met in the care home, could I insist that she returns to her own home (with 24/7 carers if necessary), & claim it as neglect by CHC if they refuse? If not, is there another way I could get mum home? I’m at my wit’s end trying to find a way out of this CHC nightmare. Surely needing to be repositioned 2-hourly or having a pressure sore aren’t reasons to keep someone in a care home?

    • Angela Sherman 2 years ago

      Patricia – there could be a ulterior motive on the part of the care home, but it’s not possible to say here. There must be a best interests meeting – and so this should be rescheduled as a matter of urgency. The care home itself can’t dictate where your mum should be – especially if it can’t meet all her needs. Pressure sores are potentially fatal, and so I can understand that careful management of your mum’s skin is required, but she is entitled to have CHC at home if she is safe there and it is in her best interests.

  25. Theresa Montgomery 3 years ago

    Hi – my Dad is eligible for full funding by CHC/nhs. Dad was evicted from an EMI nursing home -22/11/2015 – and the Court of Protection (COP) made the decision he could be cared for at home. 2 carers 4 x half hour visits to change pad and reposition him (he’s 74 no capacity-very vocal! Diagnosed 10 long years ago Alzheimers:vascular dementia and recently medicated for phycosis (just before eviction served!). My 77yr old mum is expected to be with him 24/7 – she medicates him and spoon feeds him… We are still waiting for a carers assessment for my mum, which is DELIBERATLY falling in deaf ears. We asked district nurse CHC about respite! 2weeks later she tells us no in home care avail-he must go into an emi nursing home-if she wants a break! (No nursung home will take my dad – he’s no easy patient!!) Plus the CHC wont provide a sitting service?? THE WHOLE SYSTEM IS CORRUPT. It’s devastating – we are passed from pillar to post… I AM WORN OUT 🙁 CHC say he must go in a home where a nurse us on duty as dad needs 24hr nursing? My 77 yr old mum isn’t a nurse?!

    • Angela Sherman 3 years ago

      Hi Theresa – take a look at the Pointon case vis-a-vis respite for your mum: http://www.ombudsman.org.uk/__data/assets/pdf_file/0007/1105/The-Pointon-case.pdf Also, CHC must cover all assessed care needs, whatever they are. So if the current visits are not enough, this is potentially neglect by the CHC/CCG. Many families are told that a care home is the only option, and yet many of these families also have reason to suspect that this is purely a financial consideration on the part of the CCG.

  26. Natalie 3 years ago

    Thank you so much for your reply Angela, you are correct in thinking that my mum doesn’t have capacity to make her own decisions, and yes there has been a formal best interest meeting, the hospital are happy to facilitate a home discharge if her care needs can be met,
    The CHC have arranged for another nursing home to come next week.

  27. Natalie 3 years ago

    My mum has been in hospital now for 14 months after a serious car accident that has left her with a brain injury and spinal cord damage, and we have been told she requires 24 hr care,
    She has been deemed eligible for CHC, i wish for mum to be cared for at my house as we are extremely close, and i am prepared to fill any gaps in care, i have visited the hospital every day since her accident.
    CHC have now stated that she will have to be cared for in a nursing home which is due to costs not safety !
    As there is no Lasting Power of Attorney, the CHC say they are acting in mums best interest, i find this so distressing…a nursing home is coming to assess mum next week and we have been told that she will be moved there if they can meet her needs.

    • Angela Sherman 3 years ago

      That doesn’t surprise me, Natalie – and yet CHC is available for people at home. It would really only be safety concerns that should negate the possibility of this. However, as shown in several of the above comments, families are often under pressure to choose a care home. Does your mother have the mental capacity to make her own decision on this? (I’m guessing not.) Has there been a formal best interests meeting? This is really important.

  28. Julia 3 years ago

    My 92 year old mother has Parkinson’s and still lives at home. Carers go in twice a day..half hour in the morning, half hour at night. We have to pay the Council approx £300 each month towards the cost. Is this right that we have to pay. My mother lives in sheltered accommodation.

    • Angela Sherman 3 years ago

      It may be right that you have to pay, Julia – but it depends on the extent of your mother’s care needs. It would be worth you looking at the criteria on the Checklist document. This is the initial stage of the Continuing Healthcare assessment process. Take a look at this article, and follow the link to the Checklist. If you believe your mother would get through the Checklist, she may be eligible for full funding, and would then need to be properly assessed. http://caretobedifferent.co.uk/getting-the-nhs-continuing-healthcare-assessment-process-started/

      • Julia 3 years ago

        Thank you for your reply Angela..You have been a great help…Julia..

  29. Claire Morgan 3 years ago

    I was interested to read the scenarios above, which of course are not just scenarios – they are massively stressful events. We have been through something similar today. My mother has been receiving care for years, recently increased to 6 times per day – some paid by Social Services, the remainder topped up by us (around £1,000 per week). After a recent spell in hospital, I enquired about NHS Continuing Healthcare. She was due to come out of hospital today – back to her original package of 6 calls per day except that she now falls under ‘health’ and not ‘social care’ so she has to leave hospital with NHS Continuing Healthcare in place. HOWEVER, they will only offer 4 calls per day and because of that they said they couldn’t discharge her as the calls weren’t enough! I offered to top them up with our own private money but was told we couldn’t do that. I have been on the phone all day today trying to get my mother home from hospital. Eventually, they have said she can probably leave tomorrow because the other 2 calls will be covered by a hospice team working in the community – I am sure these people will be lovely but mum doesn’t know them and will not want to entrust her very personal care needs to strangers. They have said that they will pay the full cost of nursing care in a nursing home, but mum wants to go home. Mum is fully compos mentis but can’t speak so she can’t advocate for herself. This is a crazy system and has been so stressful today that I have nearly had a breakdown!

    • Angela Sherman 3 years ago

      It is indeed totally crazy, Claire. You can’t top up CHC, but you shouldn’t need to – because CHC covers (in theory at least!) all assessed care needs. I hear a lot of reports from families who highlight how they have come under pressure to move their relative to a care home, instead of having care at home. So much for the push to get more people cared for at home! The reason for families being ‘encouraged’ to choose a care home are almost certainly financial.

  30. Cara B 3 years ago

    Hi
    I am really struggling to get a straightforward answer to what should be a simple question so figured you may be able to help.

    My father has been in a nursing home since April this year he has full CHC funding in place for his care. Sadly, although there are a few things good about the home the bad totally outweigh the good and I really believe that for his health and welfare I should move him to a different home. The home I have in mind is only 10 miles from the one he is in now but falls into a different county.

    How is his CHC funding treated if I move him? Does it automatically transfer to the new home? I have heard a rumour that we would have to go through the whole CHC assessment again if he moves is this true? He is not due a re-assessment until next July.

    I am feeling really frantic about his welfare and left the home in tears today after yet another unacceptable incident in the home. I want to get cracking but need to be well informed before ringing the CCG tomorrow!

    • Angela Sherman 3 years ago

      That sounds very distressing, Cara. If your father moves county, his CHC funding should stay with him. If the new county is in a different Clinical Commissioning Group (CCG) area, his CHC funding will simply be reviewed (at the usual review time) by the new CCG.

  31. Yvonne 3 years ago

    My husband has a terminal illness it is called PSP, there is no medication for this disease, he is now in a wheelchair, the Professor at the hospital, says we should be getting CHC, our district nurse, with social worker have done the assessments, it has taken so long, my husband has worse, they keep wanting them to change things on the assessment, so now they are asking for a psychiatrist report, waiting time for this is about 4 weeks, so things will change again, so it will be another assessment. I have booked a private psychiatrist to assess him. The Professor at the hospital said he would back us all the way, feeling very stressed, I can’t understand how they can assess him, when they don’t even meet the person that are asking for the funding. Feeling so disheartened with this all. Yvonne

  32. Naomi Millard 3 years ago

    Hi. I am currently waiting for a High Cost Panel to decide on the budget for my mums care at home. I have requested a personal budget as her POA to support the care I have implemented for her based on her wishes and her clinical needs. I have POA. However, what I found interesting was that they refused my budget the first time due to a request for payment of £45 a week for private physio to enable my mum to attempt to walk, aided with a frame, due to their arguement that physio was available on the NHS (Despite a 12 month waiting list).
    One of the questions from the CHC team was had I considered that I might need to apply to the court of justice for a “deprivation of liberty order” due to my mum having 24hr supervision. i dutifully replied that the only people depriving her of her liberty (in other words choice) were the panel deciding not to pay for physio as my mum wants to try and walk and they are refusing her the funding in order to help her.

    I was wondering if the deprivation of liberty was relevant to any of the aforementioned cases. Particularly where people are forced to go into a home instead of staying at home, which would be their choice, by the NHS refusing the right level of support and funding?

    • Angela Sherman 3 years ago

      It’s possible, Naomi – and it’s a good point. You may need to ask a solicitor for an accurate answer on that, though.

  33. christine g 3 years ago

    Our mum is 98. She went into hospital for an operation after a fall and breaking her hip. Up to then she had lived on her own and managed to look after herself very well. We did help where she would let us. She was in hospital for 6 weeks, then discharged to a nursing home for 6 weeks for what we thought was rehabilitation and assessment. We have been told she now needs 24/7 care. Mum does talk to us but not many people understand what she say’s, she wants to go home, but the social workers say its not possible as there is nobody at home to look after her, but we think she is giving up as she is not happy where she is. We do not have lasting power of attorney. Where do we stand? We have a best interest meeting with social services next Wednesday at the home.

    • Angela Sherman 3 years ago

      If your mum can still make a power of attorney, I would get that done as soon as possible. If not, you may be able to apply for a deputyship order. Either way, if she needs full time care she should be assessed for Continuing Healthcare before she’s means tested.

  34. Sarah carroll 4 years ago

    We have recently been looking at chc direct payments. My nan was forced into a care home a few years back where she had several falls leading to serious brain injury. We insisted she then come home with us, social services objected until we told them we would apply for chc funding,then they were fine with it. The hospital told us she wouldnt be eligible so we discovered tips on your website and we insisted on delaying the discharge until the case we created on our own was put to panel, which it was and she became fully funded on the Chc. We got told they would only provide a maximum of 3 hours care a day, despiteh her being assessed as needing 24 hour supervision, but as we were concerned they would force her back into a care home we agreed to provide the 24 hour care. So the carers came in of a morning and washed her and dressed and toileted her, they came back at dinner and tea and did toileting and came back at bed to put her to bed. We then provided the 24 hour supervision, all asssitance with meals and drinks which at the time was preparation and supervision while eating and drinking with some direct assistance needed as times of illness. And we did all medication.
    We even had a battle getting appropriate equipment for my Nan, she needed a custom built chair,finally after several lost referals the chc paid for it but for 10 months we rented a chair as it was a safeguarding issue leaving her in a bog standard equipment services chair. She also only got 4 pads a day even though she needed more and they would npt provide the bed mats we also had to purchase.
    Since a 5 month hospital admission last year my Nan now needs full asssitance with all drinks and supplement drinks which means i have to sit with her a minimum of 1o times a day and that is without trying food, and also 3 times a day to give medications. All of this is a lengthy process. We also provide the 24 hour supervision and do extra toileting trips in the day. We do all laundry etc. but now also she is refusing assistance from the carers and is becoming anxious when they come in so we end up doing several of their calls a day. The district nurses have also said she needs repositioning 2 hourly as well. And we deal with all of her appointments etc, just for example we had 17 contacts with the gp in 14 weeks because of her ill health. And when she goes into hospital because she needs supervision and one on one care we stay with her.
    The chc recently came out for a review, we asked for several months about changing care agency to try that,they said not until a review took place and she was proven to still be eligible. Then when they cqme out we have been told we wont know the results for 28days but they will recommend she keeps the funding. We asked if we could get direct payments because we were providing the majority of care anyway buy they said it is only awarded in extreme cases. It is so frustrating we provide all the care, which we dont mind, but we dont get paid, but they are willing to pay a care agency to come in and walk straight back out again as my nan refuses them to give her care. When we started cancelling some calls in the day to avoid th distruption they told us off stating of a weekend at least one call a day has to be done by the carers so they can come in and check on my nan and make sure nothing has happened. Talk about adding insult to injury, so we do the care for nothing but they want a care agency to come in and check on us. Whole chc funding business is a joke. My nans care agency makes a fortune off her and they dont have to do anything. Typical nhs paying the wrong people.

    • Lynne 4 years ago

      Hello,I’ve got a similar situation with th carers as Sarah Carroll,I have cancelled many calls and do everything myself,24 hours per day for 2 years and I get carers allowance of approx £61 pw, but mum does get a funding of 3000 pound every 4 weeks paid direct to myself continuing health care, 4 calls per day with 2 carers,social services pay direct to me and bill chc.my question is,can I pay myself a wage? Because the money is stacking up and they want it back. I have to look after mum 24/7 she cannot be left for a minute.i fell the Nhs r paying the wrong people too,I do everything.

      • Angela Sherman 3 years ago

        That sounds like a similarly difficult situation, Lynne. If you need further advice about paying yourself a wage from the funds, I may be able to put you in touch with someone to help you. Just let me know.

    • Angela Sherman 3 years ago

      That sounds like an appalling situation, Sarah. Also, since April 2014 everyone in receipt of CHC has the right to ask for a personal health budget.

  35. Georgina 4 years ago

    We have been having some issues with our care package. My father needs two carers at one time to move him and our previous care package allowed us to have a one carer most days and a second to help with moving. It was working well and gave my mother time to breath and get on with running the business. However we have just been reassessed and they have said we need to cut down hours. By doing this we have no money left to pay for supplies for him and none for respite. This also means we do not have two carers during the afternoon to get him out of bed. It is the bare minimum to get by, and mum cannot move him by herself. Surely this is detrimental to his health as he would be in bed for 6-7hours at a time.. My mother is also finding the pressure is affecting her mental health which we are incredibly concerned about. We cannot get by with what we have been given and we need more to give dad the care he requires. It is ludicrous that they cant even give the bare minimum, that my father will get worse with such little care. And that they also do not recognise that the added pressure will make other halves and partners ill by not being able to cope. Help!

    • Angela Sherman 3 years ago

      Carer breakdown (the term used to describe what’s happening in your case, Georgina) is a serious issue, and from reading accounts from many families in similar situations, you have to fight hard for the care. If you’re receiving local authority care, you could write to the Head of Adult Social Care and complain bitterly – plus outline the likely consequences if not action is taken immediately. If you’re receiving CHC, do the same with the CHC team and the chief exec of the local CCG. You may also decide to contact the press and/or your MP.

  36. Jenny 4 years ago

    Hi, my Father has very recently been recommended for fully funded chc. It has also been agreed that he can move county near to relatives.
    The county that has assessed him (who fund him) have said that they have capped their funding to £640 per week. Unfortunately, in the county he will be moving to we cannot find a nursing home who’s fees are less than £800 and most are around the £1000. Knowing that you cannot top up we are wondering what happens in this situation.

    • Angela 4 years ago

      The NHS cannot cap Continuing Healthcare (CHC) – they must cover all assessed care needs. Equally, a care home that asks for a top up when a person is funded by CHC is acting wrongly; they are already paid by the NHS and have no right trying to get more money from the person in care. The NHS’s refusal to cover all care fees could potentially put your father at risk of harm and neglect, and so you could make a safeguarding complaint with the Head of Adult Care at the local authority. You could also report any care home that tries to get your father to pay unnecessary (illegal) fees.

      • Debbie 2 years ago

        My dad had a stroke 8 weeks ago the hospital have given up on him and just want him out now as he’s just a bed blocker to them now, said he’s medically fit. His right side was effected, hard to communicate cannot use his right side but slowly through our help (the family) he’s moving his fingers, hand, leg, toes, feet and speaking at times putting sentences together but they say he’s unresponsive he also has chronic fagiue he does have bad days I agree but not all the time, he is also double incontinent but lately at times will ask for the loo. They have said they feel he will qualify for Continuing Healthcare the highest but the assessment wil take place in a home as they don’t do it the hospital and it will be better him going into a home as the assessment will be done quicker than if we bring him home; we really want him home but they also said that he’s needs 24 hour care 2 carers at all times and even with chc at home he will only get 4 calls a day. Can you please tell me if this is right from what I have read from your site , what they are saying and doing all seems wrong ? Wondering also shall we get a social worker as the hospital one is all for them . Deb

  37. miles 4 years ago

    Hi All Panic Mode here, in the morning at 10am I have my assessment with social services with a new social worker. I have had a full time carer for the last 4 years paid by social services, but now I have to have a new assesement and the nhs health has been mentioned as well. I have multiple illness to which there is no cure and I can’t do a lot for myself and my carer helps me with the medication, getting me in and out of bed, he cooks for me and makes sure I am clean and look nice and takes me out in his car, but im scared I’m going to lose this care.

    • Angela 4 years ago

      Not an easy situation, Miles. Remember that if you need full time care (whether that’s at home or elsewhere), an NHS Continuing Healthcare assessment is vital. Before this takes place the Continuing Healthcare dept at the local NHS (Clinical Commissioning Group) should give you information about the process and give you notice of when the first stage will happen. The information and links on this page should also help: http://caretobedifferent.co.uk/nhs-continuing-healthcare-faqs/

  38. Cath Lewis 4 years ago

    I would appreciate any advice – examples regarding joint Local Authority / CHC funding when people have an existing care package delivered by Direct Payments and wish to retain that format.
    I have been informed by health that CHC will not fund nursing needs via Direct Payments however in the case I am considering there are no regular hands-on nursing needs. My service user needs 24/7 2:1 support which is provided by 2 staff when family are at work and 1 staff + family member all other times. The staff team know my service user well and she does not want to lose them.

  39. Kathleen Cullen 4 years ago

    Thankyou for this amazing response. It hadn’t occurred to me that there could of course be a safeguarding issue here because of the risk involved, especially as most care homes in the area are unwilling to take on that risk, so how would it be safe to have him home with just three hours a day support. So what happens if I say, he cant go the care homes which are far away?

  40. Angela 4 years ago

    That sounds extremely distressing, Kathleen. As I’m sure you’re aware, the actual ‘setting’ of care does not matter when it comes to Continuing Healthcare funding, i.e. it doesn’t matter whether a person is at home or in a care home. Some families suspect that the NHS would prefer to fund someone in a care home, rather than at home, because the cost could be lower. The National Framework guidelines reinforce the point about the care setting: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/213137/National-Framework-for-NHS-CHC-NHS-FNC-Nov-2012.pdf I don’t know the details of your case, of course, but if you are only given 3 hours care per day – and yet most care homes in the area can’t care for your husband even when that’s full time – there would seem to be a massive risk and a huge potential for neglect just having 3 hours, and of course there may well be a safeguarding issue here. If you haven’t done so already, write to everyone you’ve had contact with in this process and others, e.g. Chief Exec at the local NHS, Head of Adult Care at the local authority, Head of Safeguarding at the local authority, etc. – and perhaps your MP as well. You may also need to get a solicitor to help you.

  41. Kathleen Cullen 4 years ago

    I am in an awful predicament. My husband has been in a care home since 20/1/2014, and things went wrong form the start. To make a long story short, I had to put in a massive complaint about the manager of the care home, which I did to all the relevant authorities. This sparked off an investigation which culminated in the manager being sacked and my husband was given 1-1 care for about six weeks. The care home started to improve but not as quickly as it should’ve. It appears that the care home provider had built the reputation for taking in adults with challenging behaviour but simply could not meet their needs, so our CCG have made a decision to withdraw all their people and place them in other care homes. Well it is proving very difficult to place my husband anywhere because other care homes are convinced they won’t be able to deal with him, and the authorities are looking further and further away, so I asked the CCG if we could have him home with a package of care. I was told he could have three hours a day if he comes home, whereas he has been assessed as needing continuing care 24/7. We would love to have him home but know we can’t manage without full support. How do we get the CCG to stand up to their obligations.

  42. Eva Fisher 4 years ago

    After many years of paying for social care through our local council, we went through the NHS continuing healthcare process. I received a letter stating that my husband (a quadraplegic) needs had met the elegibility for NHS fully funded continuing care. We are now being told by Social Services that only part of his care will be funded and that we need to continue to pay a co-funding for his care. It is my understanding that if you are approved to be fully funded by NHS, that ALL care (health and social care) needs will be covered by NHS. Have I misunderstood? We will be meeting with both NHS and Social Services in a meeting in the next few weeks to clarify this and I want to be certain of my facts prior to that meeting.

    • Angela 4 years ago

      Yes, if your husband meets the criteria for Continuing Healthcare then the NHS should cover all assessed care needs – and these do not need to be topped up by the family. Indeed, they cannot be topped up because the NHS should be covering all needs in the first place. I have heard of this happening before, and it is sometimes done to put pressure on a family to move someone into a care home, rather than having them at home. It doesn’t matter where a person is; the NHS funding cover all needs, including any social care needs.

    • Paul 2 years ago

      Eva – what happened in the end here

  43. E J Foxall 4 years ago

    The option of funding my wife’s care at home was not given. She has now been in a home since Jan 2013 and although they are looking after her well she is distrubed if I am not there. I go for approx 1-2 hours most days and at least one meal time. Do you think it would be fair on her to move her back home? and how do I get the healthcare funding transferred to cover a move?

    • Angela 4 years ago

      The funding and the location can be looked at as two separate things. NHS funding is available regardless of the place in which your wife’s care is provided – it could be a nursing home, a residential home, a person’s own home, etc. Making the decision about moving back home may require a Best Interests meeting if your wife no longer has the mental capacity to make that decision. If you are her health and welfare power of attorney or deputy, you may be able to lead that decision on her behalf.

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