Hospital discharge nighmare

Discussion in 'I care for a person with dementia' started by flossielime, Mar 27, 2015.

  1. flossielime

    flossielime Registered User

    May 8, 2014
    My dad is fit for discharge from hospital and has been for 2 weeks. He is becoming increasingly frustrated in hospital and now showing aggressive behaviour.

    I want to try him at home before resorting to one of the local NH.

    He has been approved for CHC funding but the person in charge of organizing this seems to be putting every obstacle in our way.

    I was told at the last MDT that the ward needed him discharge and to organise care ASAP. I did this and planned a discharge date next week. Thought I have done really well. The company i have arranged is CQC registered and has a number ofCHC clients from other areas.

    The CHC man has said I cant do this and need to wait for them to sort it out. They claim there is a needs for another full MDT. This will be the forth one. And given we have easter and so many people need to check their diary, we are looking late April / early may.

    I honestly believe it is not in my dad's best interest to stay in hospital. I am concerned he will end up sectioned if I dont get him home asap. I think the ward will back this opinion.

    I have to get him out. My gut feeling is just to take him out and hope the funding follows. Am I being naive? i could fund him at home for a month but I dont have a plan B if it is not sorted by then.
  2. Adcat

    Adcat Registered User

    Jun 15, 2014
    This makes me so cross. The CHC Man should be falling over himself to help you.
    Complain, complain, complain.
    Get onto the hospital PALs unit.
    Contact your MP.
    kick up a huge big fuss.
    It's outrageous that you and your dad should be treated like this
  3. MerryWive

    MerryWive Registered User

    Mar 20, 2015
    Hi Flossielime, that does sound like a nightmare! I do know that the contract needs to be between the CHC people and the care agency directly, so they shouldn't have been asking you to get involved with that. Sounds like maybe you have inadvertently annoyed the CHC man by cutting across the normal lines of communication?? But that shouldn't be a reason for them to drag their heels. Everyone knows that hospitals needs their beds.

    I don't understand why they are doing so many assessments. What is MDT? As I understand it, they do an assessment every year if you qualify for CHC funding. We have CHC funding and care for mum-in-law at home, have been for 5 years now, it is a good idea to establish a good relationship with the person from CHC if possible! I think it is in their aims to support a stable environment for people, so you can use that as an argument. If you ask him to share his assessment criteria with you you can see how best to describe your father in order to fit in with their criteria.

    The CHC have certain agencies that they use, it is a chore for them to set up new agencies on the payroll etc etc, so if you have picked one they don't use then that might be difficult for them, although you can ask that they make an exception if there is a certain reason you need that agency (we did that). In your situation though you just need your dad home with any agency and sort the rest out later probably.

    I don't know about funding it yourself, sounds risky because if their issue is that they are trying to push it back on social services, it may go against you if you show that you have any resources to put behind it (either person power or financial). But I don't know too much about that, hope someone else can advise you.
  4. flossielime

    flossielime Registered User

    May 8, 2014
    Thanks so much for your replies.

    MDT is Multi Disciplinary Team, so that is yet another meeting with the ward, doctor, social worker, Cpn, physio, OT and CHC. So as you can imagine getting a date when all these people are available is not easy. Plus I have job. Whilst my dad is my priority I cant keep taking time off, work have been understanding but it is getting ridiculous now. The only one of these meeting that seemed worthwhile was the one to do the DST. I dont think there is any issues left to discuss. We just need to get on with it.

    I really do not think they can push his care on to social services as he has scored so highly in so many areas of the DST. So I dont think that is the issue.

    I think the issue is i am doing something unusual in our area in that i am insisting we try my dad at home (I realise it may not work and i am not too proud to say that after few weeks ). The CHC man and the SW want him in a home. I think a home is simpler in terms of the paperwork and case closed.
  5. Saffie

    Saffie Registered User

    Mar 26, 2011
    Near Southampton
    #5 Saffie, Mar 28, 2015
    Last edited: Mar 28, 2015
    This funding is not easily gained even when someone is very ill and the CCG are obviously paying it because they consider your father's condition is serious enough to warrant it.
    I know that some people do manage to have CHC funding at home but if the CHC think your father is ill enough to warrant the funding, it could be that they think he would be better cared for in a nursing home.

    Is there a reason why you are insisting he returns home? I know we all want to remain at home but if you work and especially if, as you say, it difficult to take time off work for meetings, then it might perhaps be more beneficial for your father to have the input of permanent care rather than visits from an agency.

    I wasn't allowed to bring my husband home from hospital after 8 months because his health was so poor - but he never qualified for CHC funding.

    p.s. Incidentally, the case will never be closed because the funding is reviewed regularly and can be removed.
  6. sistermillicent

    sistermillicent Registered User

    Jan 30, 2009
    Flossielime, am I right in remembering that you are not having him home to your house but to his, where he lives alone? Because it might be very difficult to convince the powers that be that this is in his best interest as 24 hour care could be hard to guarantee even if funded.
  7. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    Why are you so against a home?
    If you're finding it difficult to get time off how will you cope with problems ie staff sickness? How can you be there to check on the carers etc?
  8. min88cat

    min88cat Registered User

    Apr 6, 2010
    Obtaining CHC funding without an all out fight is extremely difficult as you have probably seen from some of the sad and frustrating posts on here. To be honest I would grab it with both hands whilst it's on offer and not try and buck the system at the risk of losing it. If they deem that your Dad should be in a home for his own well being and safety, I would run with that rather than try and get him home. Who is to say whether his aggressive beviour is due to his frustration at being in hospital or whether it's a progression of the Dementia. Either way, if you work full time, with the best will in the world, you cannot keep track of the carers or any problem that arise.
  9. flossielime

    flossielime Registered User

    May 8, 2014
    I realise having go home to his own home is not the easy option. But it the option that I think is the best one for my dad. Staff could be sick, there could be problems,but there could also be problems in a home. My mother is in a NH (she does not have CHC) so I am not completely against the concept. It's just I believe he would settle more at home. I could be wrong but rather than moving straight to a home i think it should be tried.

    A lot of my dad's issues are due to a very high fall risk. He needs one to one care. Which can be delivered as cost effectively at home as in a NH. Paying for the home and then the one to one.

    The EMI NH's in the area I could get to are not nice and there has been suggestion of belting my dad into a special chair. So I want to avoid this if at all possible.

    I honestly think it is just weak decision making by the CHC man. And I suspect he is putting off making decisions by requesting meetings. Non of the clinical staff involved with his case appear to want the meeting. It seems to all coming from the SW and CHC. The nurse on the ward even said to me they might be dragging their feet so the hospital have no option but to discharge to an NH and then it will be harder for you to ever get him home.
  10. Jessbow

    Jessbow Registered User

    Will CHC funding cover 1:1 cover 24/7? It wouldn't have done at the rate its paid here.

    Will you/dad be topping it up to meet the shortfall?

    Will you /have you put yur requirements out to a care agency - he need 24/7 and can they supply this - and any other additional cover? Or are you hoping to find a private carer? Do you know what your local authority rate is?

    the major difference in a care seting is that there is always someone there, even if at times numbers don't quite meet standards- there is usually someone. in a residential setting there can be one person patrolling all night up and down a corridor, meeting problems as they occur, rather than 10 people sitting in 10 peoples homes.

    personally I'd grab the care home place with both hands. Funded too! If fundng I removed you are going to be in one heck of a mess at home.
  11. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    #11 Cat27, Mar 28, 2015
    Last edited: Mar 28, 2015
    But your dad will always have someone there if there are problems in the NH.
    If a home carer doesn't turn up what happens?

    How does one carer pick him after a fall?
  12. Perdita

    Perdita Registered User

    Jun 22, 2009
    Suffolk, Uk
    hi Flossie,

    Does he actually need one to one care care or does he really need more than one carer?

    I say this because my little old mum who now lives with me, is, as I say quite little, and I can only manage her alone for part of the day, in the mornings and evenings I couldn't possibly manage her alone and I have to have help, so really she needs two to one care for the most part.

    If this is the case you will find it hard to find a carer who would take this on I would imagine as the care companies have to think of the safety of their staff.

    Obviously I don't know quite how mobile your dad is and he may be much more able bodied than my mum -good luck whatever happens :)
  13. Lady in blue

    Lady in blue Registered User

    Mar 6, 2015
    I can sympathise with your situation entirely and can see it from both sides - both personal and professional as I am a Registered nurse.
    Hospital is NOT the right place for your Dad - that is clear and I'm sure the hospital are keen for him to be relocated too as hospital beds are in such short supply. Have you spoken to the senior nurse or Matron on the ward or the discharge liaison nurses who have access to all parties and may be able to pull a few strings if some people are dragging their feet.
  14. Saffie

    Saffie Registered User

    Mar 26, 2011
    Near Southampton
    I don't think that is really relevant here as the LA won't be paying the NHS will.
    The problem is that they have their ceiling rate of payment too and 24 hour care is probably not available at their rate. I would assume that they think if they are paying because he needs the extra care then it should be in the place where that can be provided, which it cannot be if your father is home on his own.

    I was told that to take my husband home from hospital would make a move to a nursing home afterwards far more traumatic for him.
  15. Moonflower

    Moonflower Registered User

    Mar 28, 2012
    Hospital isn't the right place for your dad. Why not accept the NH place so that at least he is out of hospital. Then you can see how he settles and maybe move him home if his condition improves. You could tell him he is going for convalesence.

    I don't, to be honest, see how a single carer at home is going to manage him, and that may be a concern the CHC man has.
  16. chrisdee

    chrisdee Registered User

    Nov 23, 2014
    Dear Flossielime, forgive my frankness, but this sounds rather bizarre to me.
    Have you dealt with agitation/aggression? do you know what this can be like?
    its very worrying and frightening for carers, let alone distress to the caree. To add to this is the fall risk, very worrying for single/double carers. What about 24 hours care? surely he deserves not to be put at risk. CHC is a rare bird and you have captured it, grab it before it flies away.
  17. tre

    tre Registered User

    Sep 23, 2008
    When I had an OT come out to me on Thursday I mentioned to her strapping into a chair or otherwise restraining in A CH someone who is at high risk of falls( as my husband is) and she was horrified and said this is definitely NOT allowed as it is restraint. She said homes are supposed to use movement sensors which give out a message when the patient is trying to get up.
    I told her when my husband was in hospital they told me that unless I was there with him the cot sides must be up on his bed and she said that was not allowed either and it was very risky as the patient was likely to attempt to get out and get caught up in the cot sides. I did say to her there seems to be some difference between what is meant to happen and what is actually happening.
    With regard to care at home under CHC funding was this not what Barbara Pointon achieved for her husband, albeit having regular periods of respite care as well in a nursing home. Mind you she was at home caring for husband so it was not all done by employed carers and she had a protracted legal battle to achieve it.
    I think probably the cost of 24/7 one to one care at home would be extremely expensive when there is no "free" care imput by a family member which would likely make it even more difficult to achieve.
  18. LYN T

    LYN T Registered User

    Aug 30, 2012
    Brixham Devon
    My OH was in a CH as he wasn't allowed home after a stay in a MHU. He was self funding but after 6 months he received CHC funding. One day I mentioned to his SW that I would like Pete to be at home as his condition progressed. The SW said that in certain cases that could happen and he would be assigned the maximum of 21 hours a week! When Pete was in the CH he was assigned 2 x2 hours a day 1 to 1 care by the CHC (due to poor mobility and falls) and the carers did the rest. One day the very wise carers in his CH asked me to follow them as they were attending to Pete's personal care; it took three of them to complete the care. If Pete HAD come home (although he was no longer walking) I wouldn't have been able to change him if Carers weren't there. The act of rolling him to change him was beyond me - and I'm a healthy 57 year old!

    What I'm trying to say in a long winded way is that I'm doubtful that your Dad will receive 24 care. If he doesn't who will protect him when he is on his own? When Pete was awarded CHC there were plenty of MDT meetings:eek:I think this is the norm when the NHS is involved in paying for care-understandable in a way.

    Take care

    Lyn T
  19. MerryWive

    MerryWive Registered User

    Mar 20, 2015
    Talk to the CHC man

    Flossie I am sure you are feeling pretty overwhelmed right now with the situation and with all the advice. I think you need to talk directly to the CHC man before any meeting to get him to clearly set out what his concerns are. That way you can address them clearly and move forward.

    There is a lot of info missing here such as whether your Dad is likely to wake-up at night and start wandering, but it does seem challenging to put someone needing 24/7 support at home alone with carers. It depends on the exact nature of support needed, but you did mention fall risks and as someone else pointed out, a carer is not legally allowed to pick someone up when they have fallen, they have to call an ambulance I believe, even if the person is there saying please help me... That is the legal position of the care agency, it may not be what happens in reality, but the MDT will likely be aware of the legal risks.

    We have CHC for my MIL at home, but the money does not cover full 24/7 care, so having her at home is only made possible by having unpaid family members at home to provide extra support to fill in the unfunded hours and to be extra hands because every time she needs to move e.g. from bed to toilet, we need two people, as she cannot move herself. Changing can be done by 1 person with slide sheets but it is not easy, especially during aggressive phases. Also consider that carers need lunch breaks, toilet breaks, so it is difficult to have one person on someone non-stop all day, and if they are swopping over shifts, they are quite often arriving late, so you would be thinking of overlapping the shifts by up to an hour to ensure proper handover, which entails extra cost.

    If your dad sleeps at night for the most part, you can have 'live-in' care whereby they stay over at the house and are caring all day (minus lunch break) plus maximum 2 disturbances at night. That can come in at £1,000/week if you bargain hard. If there are more than around 2 interruptions at night (the exact number depends on the CCG rules) you are officially 'waking night' and that is more expensive. If you think about it the agencies charge say £11.50 an hr at least and there are 168 hours a week so that comes in at c.£2,000/week. That is just for one person to be there 24/7, and you might need two!

    The other tactic you need to try is you need to explain that you are not accepting the proposal of a restraint chair and they need to find some other proposal asap. Because that seems to be a massive obstacle here. I think human rights and dignity need greater consideration by the MDT.
  20. flossielime

    flossielime Registered User

    May 8, 2014
    Thanks everyone for the kind replies.

    Well despite asking for advice I have decided i just cannot go on visiting my dad crying in hospital. So he is coming home tomorrow with no CHC funding in place. I am probably mad but for various reasons it had to be soon.

    I have 2 weeks off work, before a very busy month in late April/May. And my brother has come home from abroad for a month.

    My brother lives abroad but has come home and is staying at my dad's house for a month to monitor how the care goes closely (and pick him up if he falls).

    I have booked a care agency at £1700 a week! Day shift and waking nights. A carer will need to sit by his bed all night. The carers can relieve each other on breaks.

    I am sick with worry about the financial side of things. But on speaking to a lead nurse friend of mine she said that CHC has to pay something (probably no where near all) as he has been assessed as having a primary health need, even if they dont like the way i have gone about it.

    Though although some of you may be aghast at me not jumping through the CHC hoops so to speak I should point out there are 'other' circumstances to consider:
    1. I feel, if i dont act soon that he will be discharged to a NH against his will
    2. My dad is inconsolable in hospital and other friends and relatives are phoning/texting me saying I need to get him out as he is deteriorating by the day.
    3. My mum is already in a NH that SS are paying, if my dad moves out of the family home we pay for her (or even both of them if SS say no to CHC for any reason)

    I know the sensible thing is to wait but given my brother and I's time off work we have to force the issue.

    God i am worried sick!!!!!

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