discharge under 117

Discussion in 'I care for a person with dementia' started by Lulu, Jun 6, 2015.

  1. Lulu

    Lulu Registered User

    Nov 28, 2004
    Mum is in a mental health assessment unit in hospital, is in a much improved state after some weeks there, and is now ready for discharge. Our preferred Home does not have a bed currently, the others (only 3) who are able to take her with her level of needs also have no beds aprt from one. We are being urged to accept this place as an interim measure if nothing else, but when we visited the Home it is undergoing much-needed refurbishment throughout and the noise levels were not good - drill hammers, noise, mess, residents amongst it. Works will not be complete until the end of summer.
    I feel we should reject this place, but wonder what others would do in this situation? Mum has always liked peace and quiet, and part of the reason for her sectioning was due to her torment, and this impacted on her physical state. I feel that in the wrong environment she would lose ground and it would be harmful to her. It is also some distance to travel. Yet she is in an acute setting at the moment, they want her bed, and they don't think it is in her best interests to stay. We think, given the alternatives, it is.
    Any views would be appreciated.
  2. LYN T

    LYN T Registered User

    Aug 30, 2012
    Brixham Devon
    Hi Lulu

    To be honest I don't think that the staff would admit that your Mum is better off where she is. Beds in MHU's are so scarce nowadays. Once when my Husband was sectioned he was released back to the care of his CH even though the Consultant said he wasn't quite ready to go anywhere:eek: However, there wasn't one available bed in the whole of the county. A sorry state.

    I suppose you could call a best interests meeting but I don't think you will get far. Do the CH staff know that your Mum cannot stand noise? Have they suggested what they would do if your Mum was agitated? My Husband was the same-tormented-and I know that a peaceful environment is best for such people. All I can suggest is that you try to take your Mum out as often as possible-obviously I don't know if that's feasible or even if your Mum could physically get out and about.

    If the weather is good is there some outside space for your Mum to go? Sorry no real suggestions-but I hope others will be along soon to help.

    You have my sympathy

    Take care

    Lyn T XX
  3. Lulu

    Lulu Registered User

    Nov 28, 2004
    #3 Lulu, Jun 6, 2015
    Last edited: Jun 6, 2015
    Thanks for responding Lyn. You will know where I am coming from.
    We think it is in Mum's best interests to remain where she is for the time being. All the ground that has been gained would be lost with a move to the wrong place, and she would be damaged emotionally by such a move. She was sectioned due to constant and ever-increasing tormented state down of course to her dementia, but also due to the environment. She has picked up no end with the help of a supportive environment (she needs high level of support) and medication, and I really do feel she should not be moved until the Home we have identified comes available. We are willing, perhaps, to consider the placement as an interim measure once buidling works are completed, but really don't want her there at the moment as it is.
    Unfortunately she isn't well enough to be taken out, though she is still mobile. And the distance involved would make visitng frequently out of the question.
    What a mess.
    Yes, it is well known that Mum can't deal with noise and lots going on. She freaks out.
  4. Karjo

    Karjo Registered User

    Jan 11, 2012
    hello again Lulu
    One of the triggers for my Mum's behaviour is also noise and too many people around ( especially if they are not behaving appropriately)
    We were also under pressure to find somewhere for Mum under section 117 after her first nursing home failed and she ended up back in another assessment unit. i was pretty much told it was me that was unrealistic about care (I was worried about not only my Mum being beaten up but also her doing the beating up of more vulnerable clients)
    They were desperate to get her out from the assessment unit where she was settled as they wanted the bed. I was told in a roundabout manner that they would take guardianship of my Mum if I didn't get real.
    I have never felt so hurt in my life as I trusted their judgement and felt everything I had done thinking I was helping Mum was wrong.They told me she was end of life care, she would get hospital infections, they could not guarantee her safely etc etc. They told me I was wrong , wrong, wrong to think she was better off in hospital. She had to go. But I could not understand how any nursing home could cope while she was still the same person as previously, and the standards of care in nursing homes were still the same. she had simply improved because the care in the assessment unit was better than the care in the previous nursing home.
    Anyway as you probably remember from other posts I caved in and accepted the only home that would now take her. They had as it turned out actually also been duped by the hospital to accept her and did not know how bad she could react when not getting what she wanted.
    The move took place and went badly wrong. Though the hosital were cross about my unrealistic expectations of care it suddenly occured to me it was not me that was unrealistic and the problem ( though I was humiliated so much I thought it was)! it was my Mum! She was the one who was going to make or break this, not me!
    Anyway she was given notice of eviction by the end of the weekend. The move nearly killed her and me, it was truly awful.
    But every cloud has a silver lining. the carers and the whole set up at nursing home 2 was good, she just needed continual monitoring to stop her harming herself or others. As no where else would have her, not even the assessment unit, and at one time I thought she would surely need to be taken to a police cell, she was granted a reprieve, one to one care . She still attacks carers if they don't "please" her and her meds are still being tweeked to try and help us all, but at least for now no one is telling me I am somehow to blame or responsible for Mum's behaviour. You cannot imagine what a relief that is as I have felt a sense of blame for so long for how Mum behaves, like having a criminal or delinquant child and they blame bad parenting I suppose.
    Sorry this is so long winded and muddled, but if you feel what they propose for your Mum is wrong then say so, but also reiterate that this is because you know your Mum and how you think she will react, but that you are not actually responsible for how she reacts. Hopefully they will hold her bed in the hopsital for a week or two in case it goes wrong and hopefully she will settle.
    to be honest neither of the homes my Mum has been in were bad, I have really got on with the managers in both homes but it has been a nightmare for us all. they simply did not have the resources to meet Mum's needs. please try your best for your Mum but in the end the "system" sometimes makes it just too hard, but then I am sure your Mum too will then have the last word.
  5. supporter1

    supporter1 Registered User

    Sep 14, 2012
    y understanding is that 117 funding is there to prevent a readmission to the NHS assessment unit. Ridiculous that it is not achieving what it is aimed at if they use it on a placement that is fundamentally floored.

    We too as a family experienced the professional view that we did not know what we were talking about in respect to my father. It still hurts when I think about the experience that we had .. the psych and mental health nurses just did not 'get' my dad at all and were all convinced that he could manage when he really could not. He was very disturbed at that time and all they could see was someone that had intellect still . reality for my father was that he had no short term memory . was incredibly vunerable and could not even cross the road safely .. unfortunately he was not accepting of help when in the community , he was violent to my mum and the carers and wandered . It was a nightmare.

    So my advice is that you know your relative and I would stick to your guns but be aware that if it suits them the medics will force the issue and that will mean going to the place that has the vacancy.

    With my dad they insisted on him being discharged to extra care sheltered .. cracks started to appear after 8 hours and 24 hours he had hit carers and tried to leave several times and finally at 48 hours he left and there was a police search ..
    That time was probably the worst time in my life . To have to stand back and wait for the inevitable car crash was just horrible. I still cannot understand why we were not listened too. It was like we were the evil ones for saying dad could not cope but to say that in the first place for us was the hardest thing in the world to do . To this day I feel like I failed dad that I could not protect him and make everything alright .I know he would have gone to the ends of the earth for me ...

    Everything about dementia is just horrid .......
  6. Lulu

    Lulu Registered User

    Nov 28, 2004
    Thankyou so much for responding. As you cans ee, it is the early hours and, like most nights at the moment I just cannot sleep for all the worry and injustice and plain wrongness of all that is happening. Thankyou for sharing your stories - I am not alone then.
    They want her out of the Assessment Unit as she has reached her optimum (she is looking good), it is an acute unit and not in her best interests to remain there becasue at any time the unit could become busy, mum is getting used to the high level of care, she is used to interacting well with staff now, and in the event of more admissions would not be able to get the same attention from them. This is what they say.
    I think it is in her best interest to remain there, busy or not, until a suitabale palcement comes up, even if it is an interim one. It is currently quiet. It isn't my fault tthat there are no suitable placements, but they don't seem to mind where she is placed so long as she moves.
    It was difficult finding the right Home for her initially when she left our care at home. We knew they would have problems and we were proved right. These escalated and here we are now on a Section 3. They want to free the bed (and I don't dispute that it is an acute setting and it isn't right to occupy a bed for longer than is necessary), but they seem to want to do it at any cost, and it is this as you know that is plain wrong.
    Mum has never been able to tolerate noise and too much going on. The only bed available is unsuitable, but they will surely send her there. Part of me thinks OK then, do it, but you take responsibility and it will be done against my wishes, but the problem with that is that we are using my Mum to play these games, She has little enough quality of life as it is. And once they get her in this Home I believe they will ignore any problems and blame it on 'dementia progression'.
    Then as you have found, we are left with terrible guilt feelings at the end of the day.
    One of the big problems with this move is visiting. I like to visit frequently but getting there would be problematic for me without involving my husband.
    They just don't seem to listen - we know our relatives best. Karjo I also feel hurt. I have cared for Mum at home for all these years with little support, and now at this stage they seem to be able to undo all that and just do what they want to her detriment.
    As you say, it will be Mum who has the final say in this, and if she is sent to this inappropriate environment and she can't deal with all the building noise inside the Home and all the changes going on, well I only hope she protests as well as surely she will.. It is just that I know her reaction before she goes so why put her through it?
    Let's see what the next week brings ....
  7. Karjo

    Karjo Registered User

    Jan 11, 2012
    Oh Lulu I so feel for you having been through this as well. Reading what they said to you, it's almost as if it was the same assessment unit! Exactly the same words-has a new manual maybe been written for them which they are all using, have instructions come from the top that these poor tortured souls must not remain in hospital and must be moved on whatever the cost to the victim? What strikes me as doubly strange is the first time Mum was sectioned I thought she would just be there for a couple of days and she would get some help (though I was not sure how that would materialise). Ten months later and I still could not get her out of there as they said there was nowhere suitable with vacancies that could take her. They felt only two homes had the experience but there were no vacancies at one and social services would not let her go to the other. She ended up at one that I just grabbed at in the end as it was nearbye and the hospital were forceably doping her and I was desperate to get her away from that.
    As a family we had to attend several hospital managers meetings whiich was a bit like being in a court of law as people can only be held on a section 3 for 6 months without an external investigation. I was petrified because I had made up my mind to get Mum out whatever the cost because quite frankly I could have finished her off by doping her into oblivion in the comfort of my own home! Anyway a last minute reprieve a place in a nearbye home who charged the council rate accepted her. I think only accepted because they suddenly had three empty beds and their manager was leaving. I later heard from staff they thought she never should have accepted mum but she was leaving so not really bothered I suppose.
    I sometimes wonder is it cases like my Mum's that meant some manual somewhere was rewritten, especially now reading your words which seem so familiar.
    BTW when Mum was "kicked " out of the hospital the second time I told them I would not be taking her as I was not prepared to put her through this move to somewhere I had concerns about . This is because the first time we moved Mum we got stuck in the room with her for hours with her becoming increasingly agitated as she had no intention of staying there. No staff came to check how we were doing, we couldn't find anyone. We cowered there until Mum stormed off down the corridors and had to get out without saying to anyone we were going and just abandon her. luckily we knew the code but we had been there for hours and just couldn't stand it any longer. You would think they would have laid on a bit more help for a newcomer but presumeably not. I could not bare to do it again and said so many times I would not personally be moving her because of that terrible experience.
    My daughter and i also had the terrible experience of moving from first home to assessment unit. She knew something was happening as we arrived one day and were told we had two hours to get her out. It upset us both and mum picked up the vibes. She refused to get in the car and was hammering on the home door trying to get back in. Ironic as she had hammered on the door howling and crying trying to get out for months! We drove off without her and then waited. eventually it panicked her and we could still see her from the end of the drive so we went back and got her in. At the hospital she refused to get out but by that time he had arrived from work ready to get her into the hospita! Its so ridiculous when I look back I could almost laugh at were it not so tragic. Like trying to drag a dog into the vets! Hubbie told the hospital no way were we going to personally move her again, it was too dangerous and too traumatic for us all. They agreed but come the day of course I got the phone call when was I taking her to home number two. I said i wasn't doing it, it was too dangerous and had told them this many times. They eventually arranged to take her themselves. manager at home number two later said she was surprised Mum arrived with two of the most senior members of hospital staff and her alarms bells were ringing about Mum immediately (who was freaking out by then in the lounge) that perhaps she did not know all the facts about her.Of course she didn't, she never would have taken her if she did. We were lurking upstairs in case they could not handle her(which they couldnt) and the hospital staff suggested we come down to calm her, that was our mistake, we should have just left them to it and maybe the home would have refused her then and there and they would have had to take her back.But we didnt want to see poor Mum suffer more than necessary though in the long run she did. She was never able to speak properly after this stress induced delerium/shock and her neck contorted so she could not look up, her ankles swelled up, at one time she couldn't walk and she did not sleep or eat for several days and I thought she would die on her feet!
    So if you feel it would be difficult to move your Mum then ask them to do it. You dont really have much power over this but you dont have to be the one who moves her out of the frying pan and into the fire.
    Sorry i have rambled so much, hopefully it does me some good to write this hurt down, but then again maybe it just brings the hurt all flooding back again, who know but I hope all goes well for you, please let us know and keep an eye on your Mum. Hopefully she will be fine.
  8. Lulu

    Lulu Registered User

    Nov 28, 2004
    Sorry for not getting back as quickly as I wanted. I am so lucky to have your replies - thank you.
    What a worry this all causes on top of everything else - it is a disgrace.
    Karjo I hope you are feeling OK - thank you so much for sharing this and I do understand your feelings, really I do. I think this is something that will be with us for the rest of our lives as it blights everything. The Trusts have policies, discharge policies, and it must be this that makes it all so familiar to you becasue they are following the Policy as set out. We know they are going to place Mum in a place that is unsuitable at the moment, and there is nothing we can do becasue it is written. In one of the subtitles of this policy that I saw was 'Human Rights'. I thought this was going to mean we could fight Mum's corner from this perspective, but all it was saying was it was the human rights of other, more needy patients to access the beds. I do agree, but not to move someone to a place which is presently unsuitable and totally against my wishes. It isn't our fault there isn't a bed available in the Home we want for her.
    I never, ever, for one moment saw all this coming, and you are right - Mum will have the last word in this. It destroys us watching on, and causes untold distress to the sick person. Unbelievable.
    Will let you know how it goes on.
  9. Lulu

    Lulu Registered User

    Nov 28, 2004
    PM Box full

    Karjo, tried to PM you but your box is full.
  10. Karjo

    Karjo Registered User

    Jan 11, 2012
    Sorry, have cleared some space now.

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