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What will EMI Nursing Homes "put up" with?

Discussion in 'I care for a person with dementia' started by Lavender45, May 26, 2017.

  1. Lavender45

    Lavender45 Registered User

    Jun 7, 2015
    1,598
    Liverpool
    The title is pretty much sums things up.

    My mum is currently on a section 3 in a secure unit. She's been detained since the end of January. The consultant has tweaked the medication this way and that, but mum is still unpredictable, she can be calm, but she can also be violent. She bites, kicks, lashes out, spits, pretty much you name it she does it when the mood (I know it's not a mood, but I'm struggling for another word) takes her.

    This morning she was spitting at a nurse and grabbing her lanyard which could be dangerous as mum has tried to strangle me in the past and another patient in her unit. I've just been called by the ward to notify me that mum attacked another patient around lunchtime. The patient retaliated and they've both come out of it with superficial scratches.

    Mum is entitled to 117 aftercare and a social worker has been appointed. After much debate it's been agreed that mum needs an EMI Nursing Home. The social worker has told me not to look at homes which state they deal with challenging behaviour as they attract a premium and the commissioning group won't pay for that.

    Will an EMI Nursing Home be able to cope with mum? She's verbally and physically aggressive, not all the time, but there is no pattern making her unpredictable and there is no known trigger, anything or nothing can send her on the attack. I always thought I could cope at home. I was her 24/7 carer, but I know she cannot come home. The best I can do is make sure the home she goes into is the right home and that she won't need to be moved again.

    I've nothing to compare mum to. In my eyes her behaviour is challenging, but maybe I'm setting the bar too low? Should I be arguing and holding out for a home which takes challenging behaviour or would normal EMI Nursing be ok? The consultant says challenging behaviour homes aren't nice and that I wouldnt want mum in one. She may be right, but then she also said EMI residential would be fine for mum. Every residential home said no yet it was still a battle to get her to change her mind and accept that EMI nursing was needed. I think mum needs what she needs, but exactly what is that?
     
  2. nitram

    nitram Registered User

    Apr 6, 2011
    18,830
    Male
    North Manchester
    I know nothing about your mum's finances.

    You may not realise it but with a s117 placement first party top ups are allowed.

    If you go this route make sure that the top up cannot be increased every time your mum's needs increase.
     
  3. Lavender45

    Lavender45 Registered User

    Jun 7, 2015
    1,598
    Liverpool
    Thank you for your thoughts Nitram. I've just called the alzheimers society and I did ask then about top ups. Their feeling is that mum shouldn't be paying a top up for something which is needed to meet the presentation of her illness as 117 should be covering all the related costs. It's a nightmare.
     
  4. Pete R

    Pete R Registered User

    Jul 26, 2014
    2,046
    Staffs
    Your Mum has been sectioned and is therefore the responsibility of the state. The SW should be providing you with details of homes that can cope with this type of behaviour.

    They are also obliged to provide you with details of at least one home that can meet her needs and that they will fund. If that is one of the premium ones then so be it. I would imagine some of them do charge a premium and that could be for a very good reason.

    :)
     
  5. nitram

    nitram Registered User

    Apr 6, 2011
    18,830
    Male
    North Manchester
    Agreed your mum should not be asked for a top up.

    However if the only home on offer is 40 miles away and there is also one a mile away that charges slightly over the s117 tariff your mum could use her DWP pension to pay the difference. She will retain her pension and certain other benefits when s117 funded.

    This assumes you live near her and not hundreds of miles away, there could be other reasons for considering a voluntary top up to get a home of choice instead of any offered.
     
  6. Lavender45

    Lavender45 Registered User

    Jun 7, 2015
    1,598
    Liverpool
    There is an EMI Nursing Home which accepts challenging bahaviours around 30 minutes from me Nitram(mum lived with me) so distance doesn't really play a part. It boils down to the fact that the social worker doesn't think my mum has any challenging behaviour so sees no need for the CCG to be paying extra for a challenging behaviour home. It very much feels like she's trying to keep costs down. I do appreciate that 117 funding shouldn't be abused, but it should pay for what mum needs. If it weren't for the 117 funding mum would be self funding, I can't help but wonder what type of home would be suggested if she were paying.
     
  7. Lulu

    Lulu Registered User

    Nov 28, 2004
    391
    Our story is quite similar. We were unable to cope any longer caring for my Mum at home and I placed her into EMI Nursing care. I had my doubts that EMI would be able to cope and this was proved to be so. They were unable to manage her needs due to unpredictable behaviour and, following several safeguarding incidents, she was sectioned into assessment. From assessment she went onto a section 117 (after care) and we were given names of Homes capable of meeting her needs. There were very few such Homes open to us. All Mum's fees are met in full becasue she is on the 117 aftercare. Hope this helps, and sorry that youare going through this also. It's horrible, but I must say the sectioning has been the best thing that has happened.
     
  8. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,741
    Salford
    When my wife was sectioned I got to know several other visitors quite well. When we started to think about discharge we all sat down and had a talk about the homes on the list social services gave us, some wouldn't take people who had been under section, some had terrible CQC reports and all wanted a top up.
    Basically we all told social services the same thing, you find somewhere, it didn't go down well and they seemed less than impressed that we'd been talking about it.
    One man for whom top ups were impossible was told by the social worker the names of the homes that didn't need a top up and lo! they weren't on the list the rest of us had been given, probably an oversight:)
    I had to tell social service I'd stopped looking as it was a waste of time before they came up with their suggestion as they are obliged to do.
    The upshot was that 4 people from the same unit are now in the same home, without a top up and contrary to what some people say places that take the LA rate aren't all dumps, quite the contrary in our case, we're all very happy with it and so are most of the people that visit their self funding relatives.
    I give the problem to social services and see what they come back with, stop taking their calls and refuse to cooperate in the end they will have to do something like the job their being paid to do, it is their problem not yours.
    K
     
  9. Lavender45

    Lavender45 Registered User

    Jun 7, 2015
    1,598
    Liverpool
    Thank you Kevin. I wasn't given a list, I was just told to go on the Internet. The social worker has done nothing at all other than to suggest I'm too picky and to suggest I get a move on finding a home. Oh and to tell me that anywhere taking challenging behaviour is more expensive so don't bother looking there cos they won't pay for that.

    I know your wife had aggressive behaviour. Can I ask did medication completely calm things down for her, or does she still have some aggressive episodes and if so is her home registered as taking challenging behaviours?
     
  10. HillyBilly

    HillyBilly Registered User

    Dec 21, 2015
    1,948
    Ireland
    I don't think it's really your problem Lavender.
    I mean, I know it IS your problem, but it's not up to you to find a suitable placement for your Mum. That is the job of SS! x
     
  11. Lulu

    Lulu Registered User

    Nov 28, 2004
    391
    Just an afterthought. I also sought the very good advice of the AS Helpline, and also MIND have some very good factsheets about sectioning.
     
  12. Jennylizfuller

    Jennylizfuller Registered User

    Mar 7, 2017
    7
    Hi
    My mum is in a EMI nursing home & has settled very well
    She has challenging behaviour
    The staff are great well trained
    Choose a home with good staff you'll know what I mean when you visit
    Staff reacting to behaviour interaction with residents not sitting in a huddle doing nothing
    Been to many before we choose for mum & many rejections as well
    Good luck
    Regards


    Sent from my iPad using Talking Point
     
  13. Lulu

    Lulu Registered User

    Nov 28, 2004
    391
    The EMI Nursing I placed my mum was also very very good, and dealt with challenging behaviour very well. Unfortunately, Mum's behaviour was just too challenging.
     
  14. canary

    canary Registered User

    Feb 25, 2014
    9,899
    Female
    South coast
    What will EMI Nursing Homes "put up" with?

    I think that is a question that is always worth asking the various homes in question because it seems to vary so much.
    Some homes that say they specialise in dementia wont tolerate common dementia symptoms like wandering at night, going into other peoples rooms and resisting personal care (refusing baths/showers etc). Others will accept aggression and some violence - I remember the time mum hit one of the carers and I was horrified and certain that she would have to leave, but they just took it in their stride.

    I always recommend that one of the questions you ask when you are looking for a residential home is what behaviour they would not tolerate.
     
  15. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,701
    Hi Lavender,

    I think your situation is very similar to what ours was!

    Trying to cut a long story short! Mil - after us fighting for several months - was admitted to a secure EMI assessment ward in our local hospital. Caring for her in our home was becoming unsustainable due to challenging behaviour, which included extreme verbal aggression and which was starting to move towards physical aggression. She had been placed on an horrendous cocktail of anti-psychotic meds by a succession of consultants, and we felt that they needed to be withdrawn as they obviously were not helping and may have been making her worse.

    She was placed under a section 2, and as this came to an end, the hospital tried to discharge her, with just 24 hours notice, without actually having made any changes (other than withdrawing a sleeping tablet and her maintenance anti-biotics) and without having followed ANY of the discharge assessments that their own hospital policy demanded. Huge battle followed, and I 100% believe it was us making it clear that we knew Mil's rights and we wouldn't be fobbed off that forced them into then 'doing things properly'. She was placed under a section 3 (though they didn't tell us about this meaning she would receive 117 funding at first) and they finally started to change her meds. Sadly, nothing seemed to make any difference and the deterioration in her behaviour in terms of physical violence got steadily worse - I lost count of the number of times I was phoned so that they could let me know that yet another POVA had been issued as a result of Mil having an 'altercation' with another patient :( Despite this, we felt she seemed calmer, and we tried bringing her home - it didn't work, with her attacking me within just a few hours, and she returned to the unit. The decision was reluctantly made that residential care was now the only option.

    And here's where I start to get to the point, lol.

    When we tried to bring Mil home, she wasn't discharged - she was released on a trial basis - they kept her bed on the ward, and said they would so so for up to 2 weeks. They also said that if after that, she deteriorated, she would be readmitted as an emergency. And apparently, this is done to prevent a 'failed discharge', which would reflect very badly on the unit. So my first bit of advice would be to start mentioning the phrase 'failed discharge' to the Social worker and the unit, putting it it writing where you can. Because if they release her to a home that cannot cope with her behaviour, then it is a failed discharge - and if they know that you know about this, and will complain, it may just make a difference.

    My second bit of advice would be to start querying who has decided that your Mum doesn't need care that includes provision for challenging behaviour? Because where Mil was concerned, the decision that she needed EMI nursing care at a place that could cope with her behaviour, was made by the consultant and the senior nursing team - not by a Social Worker. There should be an assessment meeting/best interest meeting, involving consultant, senior staff (and the social worker can be present) where the decision as to what type of after care your Mum needs should be made, and you should be allowed to attend. And the 117 funding should cover whatever that is, with no top ups required. I would insist on this assessment, throwing in the 'failed discharge' phrase and with constant references to the number of physically violent incidents that have happened - and be demanding, in writing, justification on why this doesn't constitute the need for after care in a home that can cope with challenging behaviour, if the Social Worker or hospital staff insists on sticking to it not being required. We made it clear that we expected all the assessments to be done before discharge - and also made it clear that we would complain and hold the hospital (staff, social workers and all) responsible if we felt that were at any stage not acting in her best interests or in line with what she needed. Not nice having to be so aggressive and bolshie, but I don't think that these day, you have much of a choice :( This resulted in the hospital agreeing that an EMI Nursing home was needed - and one that could cope with her behaviour, at that. The unit then provided me with a list of homes that could meet her needs.

    When we visited EMI nursing homes on the list (and we didn't visit many, because thank goodness , the most local home had a vacancy) we were very blunt and very honest about Mil's behaviour - because we wanted to be sure that they could cope - and we didn't trust the hospital to be honest, basically. We told them that she could (and would) smack, hit, scratch and throw things, including cups of tea, shoes and even her zimmer frame. We told them about the delusions that were almost constant and mostly either paranoid or terrifying. That she was nocturnally incontinent, had disturbed sleep patterns, was always trying to escape and go home. That if she got her hands on a phone she would call the police, that she would make frequent and quite serious allegations of physical abuse and goodness knows what else against staff. That she was (and still mostly is) very resistant to distraction and sometimes needed one-to-one support. Doing this meant when they went to the ward to assess Mil, they knew in advance what to ask about, could spot any 'downplaying' by the staff and had all info before Mil was discharged into their care - we were really lucky that the most local home was more than sure that they could cope with Mils behaviour (and have done so since she went there, brilliantly). So - some EMI Nursing homes can and do 'put up with' quite a lot.

    The SW is just trying to save money - we all know funds are scarce, but that is NOT your mUm's problem. She is entitled to and deserves the level of care that her condition requires, and 117 funding should cover this without the need for top ups. But you do have to fight, and call their bluff when the professionals try chancing their arm to save them paying out what a person is entitled too - wrong, but sadly true :(

    I hope this helps,

    Ann xxx
     
  16. Lulu

    Lulu Registered User

    Nov 28, 2004
    391
    There should be an assessment meeting/best interest meeting, involving consultant, senior staff (and the social worker can be present) where the decision as to what type of after care your Mum needs should be made, and you should be allowed to attend. And the 117 funding should cover whatever that is, with no top ups required. I would insist on this assessment,

    This is such a good post, Annmac. Our case was very similar, although the assessment unit my mum was on at the hospital seemed to do everything by the book. Having said that I also ensured I had done my homework. I would also add that at the meetings we attended there was an option of having an independent 'advocate' (I can't recall the official name of his role) which the hospital made us aware of, and I used this very good service. He attended all our meetings, took notes etc.
     
  17. AlsoConfused

    AlsoConfused Registered User

    Sep 17, 2010
    1,958
    In the circumstances, I'd want to complain to the social worker's manager about the pressure you've been put under to find a place tailored to the Council's budget problems and not the patient's needs.

    Anyone who's repeatedly assaulted other people and carried out such potentially lethal attacks as strangling them NEEDS to be cared for in a generously staffed specialist environment, for their own safety as well as other people's.
     

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