Would like you to have me in your thoughts on Thursday 29th October please

Discussion in 'Younger people with dementia and their carers' started by Beannie, Oct 28, 2015.

  1. Beannie

    Beannie Registered User

    Aug 17, 2015
    94
    East Midlands
    I am about to commence battle with the SW's tomorrow (Thursday 29th October) after being given the number of the Chief Exec of Adult Services in our local area and a very sympathetic phone call with his PA.

    My husband was diagnosed at the age of 57 with Idiopathic Parkinsons and Alzheimers Dementia in 2010/2011 respectively. He battled bravely on at work but had to stop in 2013. I have been his carer for the last 2 years and in July this year I could not cope anymore after his Alzheimers went downhill rapidly. After a heated discussion with the SS it was agreed I could place him in respite care for 2 weeks. It soon became apparent that I could no longer cope with his needs at home and he did not want to come back home.

    I was told by Social Services because I didn't have 4 Carers a day, even if it failed they would not fund him in any shape or form. At the time I just took what they said as I was on the verge of a nervous breakdown myself. However, I have got myself together and I am now ready to commence battle not just for my husband but for all those who are in this position. I also have a meeting with my MP in November and shall be bringing up the Prime Minister's speech entitled Dementia 2020. I will post again to let you know how it goes but in the meantime 'let the battle commence'
     
  2. cragmaid

    cragmaid Registered User

    Oct 18, 2010
    7,963
    North East England
    It is awful that you have to face a battle. Wonder when common sense will be allowed to come in to play.
    You have my support.x.x
     
  3. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,302
    Cotswolds
    Oh Beannie, you have my every sympathy and support :)

    I too was told in the summer that 'SS do not fund residential care at all', and then in the next breath that mum 'does not meet the criteria' for this care that they had just said was unavailable!! :eek:

    We also had the 'you have to have four care visits a day before we can even look at it' mantra repeated over and over again. I couldn't get them to accept that mum only had three visits because in effect I was doing the fourth (and fifth, and so on......)

    Mum's GP was at a loss, he said she'd have to be admitted to hospital before a care home would be funded. He was right, she was found a placement from hospital. But that put completely unnecessary stress on all of us, and on the NHS. So much better if she could have been placed from home......

    Well done for pursuing this. More power to your elbow xxxx
     
  4. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,020
    Yorkshire
    I'll be thinking of you all day.
    Be sure to come back and tell us what happens.
     
  5. DMac

    DMac Registered User

    Jul 18, 2015
    537
    Female
    Surrey, UK
    You are in my thoughts too. Well done for taking on such an important battle. Do let us know the outcome. x
     
  6. nellbelles

    nellbelles Volunteer Host

    Nov 6, 2008
    8,403
    leicester
    When I took on social services I found the help from an advocate at our local carers centre invaluable, even accompanying me to meetings and prompting me how to respond to the panel of a dementia advisor, her boss a senior SW and a CPN.

    Wishing you well.
     
  7. Slugsta

    Slugsta Registered User

    I will be thinking of you. It is totally wrong that anyone should have to fight for the treatment that someone else needs - but the sad fact is that you do, and I wish you the very best.
     
  8. flowerpot

    flowerpot Registered User

    You have my full support as two years ago we had this battle ourselves!

    My MiL was in hospital after a fall while in respite! We had by then decided that she was going to have to go in full time as we just couldn't cope any more! (She was living with us up until this time)
    To cut a long story short we had a meeting in the hospital where our ss guy was as always lovely and his boss who had to be at the meeting was a complete and utter *****!!!! She was adamant that we could cope with four visits a day and us doing the rest! How I didn't hit the woman I'll never know but suffice to say by the end of the day MiL had a place in a nursing home. She's still there and as happy as she can be. She has the nursing side of it paid for but is self funding for the rest.

    Good luck with it all but really you and none of us should have to face these battles :( Being a carer is hard enough without any of the added stress.
     
  9. Beannie

    Beannie Registered User

    Aug 17, 2015
    94
    East Midlands
    #9 Beannie, Oct 29, 2015
    Last edited: Oct 29, 2015
    What they don't realise is, I have my 'very savvy' brother coming to scribe for me whether they like it or not and if they say no to funding again this time then it is straight back to the Chief Exec of Adult Services (we will be on first name terms by the time he has heard the last of me!!) and then to the local paper and radio station and then if still nothing, to the National Papers. I think they would have a field day in light of Prime Minister Cameron's speech on Dementia 2020. They have also told me a complete load of rubbish with regards to how much of my husband's occupational pensions they take, 100% according to them!! 50% according to the Care Act of 2014 which became law on the statute books in April this year. They must think we are all stupid, what we really are is vulnerable. I cannot afford to get into litigation with Solicitors but I can access a far wider reaching audience, via the media. I have nothing to lose and everything to gain. They cannot take anymore from me anyway, Parkinsons and Alzheimers has already done that. Wow I am truly on a roll!!!!
     
  10. CeliaW

    CeliaW Registered User

    Jan 29, 2009
    5,655
    Hampshire
    Good luck today! Sad that we all have to fight so much x
     
  11. bemused1

    bemused1 Registered User

    Mar 4, 2012
    3,403
    Good luck today. Will be thinking of you
     
  12. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,302
    Cotswolds
    Sending you good vibes Beannie. Well done your brother, too :)

    I have my fingers crossed for you. Really hope you don't have to go to the media but I admire you for being prepared to xx
     
  13. lin1

    lin1 Registered User

    Jan 14, 2010
    9,322
    Female
    East Kent
    Hope it goes all your way. Good luck.
     
  14. AlsoConfused

    AlsoConfused Registered User

    Sep 17, 2010
    1,955
  15. flowerpot

    flowerpot Registered User

    Good luck and thinking of you xx
     
  16. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    10,654
    North West
    All the very best to you. I'm sure the whole of TP is behind you. Please keep us posted.
     
  17. MorbidMagpie

    MorbidMagpie Registered User

    Nov 10, 2015
    23
    England
    I hope you got the support that you need.

    I am unsure what your LA's policy is on funding residential care. In the one that I work for we have to exhaust all other options prior to considering residential care but we don't necessarily have to demonstrate that they have all actually been tried as this might put somebody at risk of harm, we just need to justify why we did not feel it appropriate to try an option.
    Under the Care Act 2014 we also have to consider the impact of being a carer on someone's own physical, mental and emotional wellbeing and what risk of harm may be posed to themselves as a result of their caring role.

    Unfortunately there is huge pressure on resources both when in our own homes and in residential care so we are having to really argue for services for both scenarios, people wanting to stay at home and people wanting to go into residential care. It is a difficult job and there are many inappropriate admissions to residential care as there are inappropriate decisions to remain at home with less support than can be offered in residential care, and there can be a fine line between the two.

    I am both a social worker and I have a parent with early onset dementia (age 55) so I unfortunately have to face both sides of the coin, which isn't always easy in itself, but I do know that social workers for the most part do their job because they want to make a difference to people and don't set out with the intention of battling with families, but unfortunately the policies from above them make it very difficult to appear that they are doing anything but that.
     
  18. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    10,654
    North West

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