Has anyone else heard of an experience so appalling?

Discussion in 'ARCHIVE FORUM: Support discussions' started by Les, Nov 20, 2007.

  1. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    You know the Mental Capacity Act now has a criminal offence of neglect or abuse of a person who lacks capacity. I have to feel that this comes firmly in this category.
  2. Les

    Les Registered User

    Jun 23, 2004
    Thanks everyone - in a way it's good to hear you are all as angry about it as I am. it's hard sometimes to know if we feel things are so bad simply because it's our own loved one who is suffering.

    CSCI is actually only for England and Wales - the equivalent in Scotland is the Care Commission, and they are the first people we told. So an investigation is going on right now.

    When Mum visited Dad today she walked into the living room at the home, and dad looked up and beamed at her. And he was smiling at everyone else too. A good sign I think!! The care home said he was a pleasure to deal with, that he was polite and quiet and gentle. And that he hasn't been agitated at all. And this is the man they had to tie up 24 hours a day.... grrrrrr. In the new home he is wandering around a little but he's happier being able to move, and he's being looked after.

    This amused my mum: Dad has a habit of quietly calling my mum's name all the time - she's called Mary - and apparently the carers told Mum he was sitting in the living room calling "mary, mary" and the lady who was sitting in the chair next to him was coincidentally called Mary. And she kept trying to find out what he wanted from her. And he just kept calling "mary, mary". I think the two of them got in quite a muddle....

  3. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Les, it's such good news that your dad is happy in his new home. I hope your mum is happier now too.


    PS I told the charge nurse at John's home about it -- they're upset too, and want to know the outcome.
  4. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    Rats - I forgot you were in Scotland. Does the Mental Capacity Act cover Scotland? Maybe not. Sorry if I've clouded the issue.
  5. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
  6. christine_batch

    christine_batch Registered User

    Jul 31, 2007
    If I had been in you position !!!!

    Dear Lesley,
    At least you Dad is out of that hell. As for the new Home, he sounds settled already. Amusing about the Mary part. Do not think your will be seen as a troublemaker, just someone who cares not only for their loved ones but for those who have no one to speak for them. I am a very timid person but when the Care is not being given I have taken on the Local Authorities and won for the under 65's.
    So well done, at least you know the other resident have not been left without someone having done something for them.
    Take Care. Best wishes. Christine
  7. Linda Mc

    Linda Mc Registered User

    Jul 3, 2005
    Nr Mold
    So pleased to hear your dad is smiling again and happy in the new home.:)

    Lets hope no one else has to suffer the hurt, pain and indignity he did.

    Good news about the suspensions and dismissals. I'm sure the powers that be will be investigating.

    Love Linda x
  8. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    North Derbyshire
    Dear Les,

    Like everyone else on this post, I felt so sorry for you. I haven't read to the end yet, I truly hope you have found a solution. This home sounds to me that it should be wiped off the map. I have some problems with my mum's home, but hey, they are minor compared to this.

    I hope you get a good result, and a safe and comfortable place. There are lots of them out there, very caring, very professional. And if you feel like you want to complain to the powers that be, good on you, but it isn't always easy to do so when you have the stress of dealing with your parent as well.

    Much love, hope you get it sorted.

  9. alfjess

    alfjess Registered User

    Jul 10, 2006
    south lanarkshire

    This might have a bearing on the thread or not, but I was horrified to learn that there is no obligation for CSSI to inform users of a care home about any complaints, upheld.

    When checking out the BUPA care home, where NHS are talking about locating Mum, I discovered a scandal.An old person was discovered in a bath of cold water. Her Daughter complained to CSSI, but NHS knew nothing about it.

    The biggest scandal in my eyes is that CSSI isn't obliged to tell NHS (the user) who have contracted 90 beds in this home, of any complaints. Even the complaints which have been upheld.

    Talk about Depts not speaking to each other:eek: and how then are deficites in care to be rectified, if no one knows there are any??

  10. elaineo2

    elaineo2 Registered User

    Jul 6, 2007
    leigh lancashire
    dear alfjess.it's appalling i know.The home will recieve a copy of the complaint and investigated,but CSCI are obliged to maintain confidentiality.Compalints may be made anonymously,which makes life more difficult for CSCI.Their obligation is to investigate the complaint and make referrals where necessary to the manager of the home.The home i work at has a complaints book for families to make a written record of their complaint.There is a reply box for the manager or care team leader to say how the complaint is being dealt with.This is open for families to view at any time.I am proud to say there have been only a couple of complaints since we started this 6 months ago.

    it love elainex
  11. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    I didn't look at the csci site, but the SCRC lists upheld complaints for homes. If the csci don't do something similar, why not? I want to know. If they can do it north of the border, they can do it soulth as far as I'm concerned.
  12. TinaT

    TinaT Registered User

    Sep 27, 2006

    As you all know I visited 3 EMI units in my area and was so upset at the conditions I saw that I sent a detailed report to CSCI and carefully placed each complaint under one of their own headed numbers of inspection areas. They replied that they were not obliged to report on these numbers at every visit and could they have my permission to forward my remarks to the homes concerned on my behalf. I replied that if I wanted to contact the homes then I would do so without their help. They sent on the comments and my phone number and address regardless of my written wishes to the contrary. I have received replies now from two of the homes. One home has partially upheld my comments, one has completely denied them and I wonder from what they have written if I ever actually visited their estabishment as they are so opposite!

    However I am angry that the CSCI disreguarded my wishes. (I am at the moment up to my maximum stress level trying to look after things on behalf of my husband and did not want this extra stress just now, let alone GOD FORBID he should ever have to go into one of them. I have written to my MP about the CSCI actions but after 7 weeks still haven't heard anything except a standard 'have recieved your letter' reply. xxTinaT
  13. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Dear Tina,

    Isn`t it sad that we should be such a neglected area of welfare.

    Some of the posts I read cause me nothing less than despair. They make me wish I had the strength to tie myself to the railings of the Houses of Parliament and refuse to move until all homes would be closed down unless they met an accepted standard of care.

    It really is a question of speaking up for those who are unable to speak for themselves. Such a shame no-one is prepared to listen.
  14. alfjess

    alfjess Registered User

    Jul 10, 2006
    south lanarkshire
    Hi Elaine
    From what I have read CSCI are not obliged to maintain confidentiality, but there is no statute which says they should tell other contract holders, in this case NHS, of any complaints upheld.

    I'm sure the complainent did not ask for confidentiality. Her mother had been left in a bath of cold water, she thought her mother was dead, she was blue and it was reported by BBC but still the NHS knew nothing about the incident

    This is the home where, I am told Mum will be cared for, unless there is vast improvement in her condition.

    I am worried sick, but have not really any choice

  15. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    I'm a bit confused Alfjess. You're in Scotland, no? So this home would be searchable via the Care Commission rather than the CSCI. And the Care commission actually lists complaints on their website by home. Which the CSCI does not (why not I don't know). So I think I'd be asking the NHS WHY they didn't know this - surely it's their responsibility to make basic checks before block booking beds? I suppose what has happened is this is a long-standing contract and they don't go back and check for up-to-date details.So (if you feel like taking the further) I would be asking why they don't keep closer tabs on what I suppose could be classed as their "suppliers".
  16. alfjess

    alfjess Registered User

    Jul 10, 2006
    south lanarkshire
    Hi Jennifer
    Yes it is the care commision and I have read the care commission reports.

    I found this report when trying to research the nursing home

    NHS have a contract with this nursing home to provide continuing care facilities
    I did mention to the CPN when this home was suggested that there had been a few problems and the reports didn't make good reading, she agreed, but said, it read worse than it was and told me to make an appointment to view.
    I know when considering a home we should just appear without an appointment, but this is an NHS facility
    and with my Mum's needs, I don't think I will have any choice, because, as I said barring a miracle, Mum needs more than a dementia unit.

    Lets pray for a miracle

  17. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    #77 jenniferpa, Nov 26, 2007
    Last edited: Nov 26, 2007
    I'm slow but I get there in the end - with a bit of help anyway:D

    Mind you, from that news report, you can see why they wouldn't inform them - it would appear that the contract has no performance standards. I sometimes wonder exactly who writes contracts like that - I swear, a mariginally trained monkey could do a better job of ensuring that there are checks and balances.
  18. ellie 123

    ellie 123 Registered User

    May 25, 2006
    I am angry, sad, dejected, frustrated, exhausted and cynical to name but a few - so I apologise in advance if my comments upset.

    I have seen some of this 'abuse' in an nhs hospital let alone a home and I know one mustn't generalise but what with this and the Panorama programme, I have to ask - how much longer? Can we not get together and act? Take me for example, I'm still fighting on, trying to get mum home before she dies. I've had no quality time with mum because every time I overcome one barrier, someone else will put another up to stop me. The fact that both myself and my mother are human beings isn;t something that is taken into consideration. And if mum dies before she is allowed to come home, I really don't know how I will react. You see I think I'd like to see everyone who took part in delaying her move, well I think I'd like to see them all struck down and suffer a little of what we are suffering.

    My God, what are we coming to - someone mentioned the Bulgarian programme, at least they have some excuse - but what excuse do we and this country have? Are we really only prepared to sit back and log on and have a moan. If society is to survive at some sort of respectable level, surely it should be caring, loving people like us that should take action now. Believe me I really don;t have the time or energy but the experiences we all read about are unexceptable and if we don't make the people listen - no one will. Do you all want what is happening to our loved ones to happen to us when we reach their age?

    If anyone is interested in taking some action - one person alone isn't enough - please let me know and if I've broken some rule or upset anyone, I truly, truly apologise that was not my intention. I'm just sick and tired of like a lot of you, all the rubbish that's happening to myself and mum.

    A very sad ellie X
  19. EmJ

    EmJ Registered User

    Sep 26, 2007

    That's what is so good about this forum is that it allows people to have a voice where they fail to be listened to elsewhere. It allows you to read positive uplifting experiences but it also makes you aware of the terrible treatment that some people receive.

    More does need to be done. There needs to be more safeguards in place to protect vulnerable people. It is very sad to read about people receiving such terrible treatment and being left in such despair. It is bad enough watching your loved ones having this disease but to be treated in such an inhumane way is what I find incomprehensible.

    At this point in time my family are a bit happier with our situation regarding my granny's care. But last year we were like you in very frustrating circumstances and the treatment we received for trying to uphold someones basic human rights was terrible. The thing we found most difficult to cope with was that the professionals we were dealing with were using their positions of power not to benefit people with dementia at all. Yet they continue to promote themselves as being there to help! They were in the caring profession but they certainly didn't demonstrate that they cared in the slightest.

    I am so glad that Alzheimer Scotland and the Alzheimers Society are there to provide advice and support. They do care.

    I hope your situation improves Ellie.

    EmJ :)
  20. alfjess

    alfjess Registered User

    Jul 10, 2006
    south lanarkshire
    Hi Jennifer

    You are so right about the contract.

    I would think whoever wrote the contract had no experience of negotiating contracts, maybe a trained monkey would have indeed made a better job of it


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