1. 2jays

    2jays Registered User

    Jun 4, 2010
    West Midlands
    Spoke to someone who is in the front line of care in Buckinghamshire re short notice/short time respite beds and why not available.

    They told me that the council used to have 2 beds per care home in the area they are involved in but the council stopped block booking emergency respite beds in 2008 when the banks crashed. It seems that the local council lost money in the Icelandic crash and cancelled things they considered "unessential"

    Despite trying to reinstate these beds, nothing will convince the council that it is an essential need. They insist there is no one in the area requiring this type of care....

    As an aside.... This council will also not provide wheel chairs through OT/Physio if a person is in a care home. It is up to the relatives to buy a wheelchair if one is needed. They will provide wheelchairs to those in their own homes, but consider those in care as not needing them...

    Words fail me in commenting on this logic.....

    Sent from my iPhone using Talking Point
  2. Spamar

    Spamar Registered User

    Oct 5, 2013
    A private nursing home manager I spoke to today said they kept a spare room and several people used it regularly. At the moment it would be available for emergency respite BUT he is leaving at the end of the month and who can tell what the new manager will do. He did say occupancy in the home is rising, intimating that this room may not be available for much longer. OH would be self funding, but they also take LA people.
  3. Summerheather

    Summerheather Registered User

    Feb 22, 2015
    Just to bump it up!!
  4. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    Thanks everyone - its slowly but surely building into a really worrying picture, isn't it?

    How on earth can respite facilities be deemed 'unessential' - never mind the provision of wheelchairs!!!! It beggars belief :(

    And the point about lack of choice leading to being forced to consider unsuitable facilities is very valid - especially for emergency care, when stress levels are high anyway :(

    I'm slowly (very slowly, as - sods law - I currently have Mil with a chest infection and I simply haven't been able to just sit and concentrate) putting some sort of statement/letter together, trying to encapsulate the importance of respite and how the lack of availability for bookable (and some times, even emergency) respite is currently a major issue for carers.

    Please keep examples and info coming in - the more we have, the louder we can shout!
  5. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    Ann, I hope you feel better soon :)

    I was going to ask the social worker about bookable respite at mum's assessment this week, but as she (mum) refused respite altogether, I'm sorry, I lost the plot :(

    I will, I promise, look for another opportunity :eek:

    Take care of yourself

    Lindy xx
  6. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    Just popping in briefly, as having the day from hell here :(

    Phone call actually received as promised from Head of Elderly Care at Social Services. By Monday, she hopes to have the approval from finances to start a pilot scheme asap for bookable respite beds, using the EMI residential sister home to the EMI unit where Mil receives day care - she openly said that in raising the issue it had more or less pushed the LA to get the situation of no bookable respite beds finally resolved for this area. I'm not jumping for joy yet, as by pilot scheme it could only be one or two beds at best, which is inadequate, and I've yet to be given a time frame for when we will actually be able to book - but its a start. She will phone me on Monday to confirm finance approval - and then we will see. I've made it clear that the issue doesn't stop here - and have suggested that if this area really do do something constructive, then perhaps they can help the issue be better publicised and perhaps they could 'lead the way' in showing that its an essential service that can be offered by LA's.

    It might have kind of brought the whole message home clearly to her, because during the phone call, poor Mil, ill with a chest infection and delusional beyond belief at the moment, could probably be clearly heard crying and non-stop fretting, pestering and rambling about imaginary people and situations. Her distress was very apparent - and from the sound of it, it might have been far more eloquent and persuasive than anything I could have said.
  7. Hair Twiddler

    Hair Twiddler Registered User

    Aug 14, 2012
    Middle England
    Sorry you are having a day from hell.
    Poor you, poor MIL, poor hubby when he gets in.
    As you say having MIL vocal in the background, when in conversation with Head of Elderly Care in your area, was (in a horrible way) quite a bonus - your "onlooker" could have been left in little doubt of your every day life and that of your family. Lets hope that they keep this in mind.
    Weekend approaches...hey ho. :)
    - Twiddler x
  8. CeliaW

    CeliaW Registered User

    Jan 29, 2009
    Well done Ann, as you say it's still may not be the answer / enough but it's a start. I am amazed how much you have done alongside all the stress of caring that you have.

    Dare I ask if anyone else has come back to you of followed up on earlier calls / conversations?

    Hope the weekend is not so hell if hopefully "some" of the problem is made worse by the infection and the antibiotics start to kick in x
  9. its a struggle

    its a struggle Registered User

    Freedom of information requests

    hello all, I am a newbie to TP and am absolutely staggered by what I am reading about so called care in this country. Also very frightened as MIL has diagnosis of MCI (which is a joke as the assessment never focuses on her day to day capabilities) and certainly seems more like AD or VasD from our observations.

    I have followed this thread and apologies if I have missed it, but has anyone put in a FOI request regarding funding, beds, usage etc? This will force the LA to put facts & figures to their assertions that measures are being put in place blah, blah, blah.

    I don't know how to thank you for your commitment & determination Ann without sounding patronising, so Thank-You from the bottom of my heart will have to suffice.
  10. Witzend

    Witzend Registered User

    Aug 29, 2007
    SW London
    The Alzheimer's Soc. can't even spell it!

    I have just seen 'restbite' on the home page.

    I know I am a pedant, but honestly, this sort of thing on the official home page of a major charity does make me despair.
  11. Grey Lad

    Grey Lad Registered User

    Sep 12, 2014
    North East Lincs
    Entitlement to Respite (Time Off)

    Caring is a labour of love for my dear wife Maureen. She has vascular dementia following stroke and I do my best to attend to her needs without resentment.

    A couple of weeks ago one of our carers mentioned a local arrangement where I am entitled to a weeks respite every couple on months. She indicated that this is funded by Adult Social Care. So I am on the case: progress is painful and it has been difficult to achieve a night off at the moment.

    Followers of my thread: 'News from Cleethorpes' will note that authorisation for a night sit for Monday has missed the Care Agency deadline for organising their staff rotas. It's hard work to establish my entitlement to respite but it is something I just have to sort out. Maureen deserves her husband to be fit to give her the care she deserves. I will provide updates of 'progress' on this thread next week.
  12. RedLou

    RedLou Registered User

    Jul 30, 2014
    I don't think spelling is pedantic, it's basic. :)
  13. Spamar

    Spamar Registered User

    Oct 5, 2013
    It's poor proof reading.
    I hate it, although computers these days put in what it thinks you want to write, rather than what you actually want to write. That's where restbite comes from. Interestingly my iPad has tried to convert it to nest bite !
    Maybe a new thread!
  14. Pickles53

    Pickles53 Registered User

    Feb 25, 2014
    Radcliffe on Trent
    I'm a grammar and spelling pedant and proud of it! Most of these mistakes are just lazy (or non-existent) proof-reading. I used to be a civil servant and was frequently annoyed by this sort of thing when documents were published without adequate checking.
  15. Spamar

    Spamar Registered User

    Oct 5, 2013
    Story for you: OHs 50th birthday. I bought him 2 vol. Oxford Shorter English Dictionary. Wrote inside ' to the nicest pedant I know'. Friend, sitting on floor, reading this, said ' what does pedant mean!' She was shouted down, but she was holding A to Markworthy' so I suppose she had an excuse!

    That's also where my pedantry comes from - OH
  16. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    I'm glad you found this thread GL :)
  17. mancmum

    mancmum Registered User

    Feb 6, 2012
    Respite for carers not included in Alzheimers Manifesto

    I downloaded and read the Alzheimers Society manifesto for the election and was disappointed that there was nothing to specifically deal with the needs of carers. Did anyone else feel the same?
  18. Summerheather

    Summerheather Registered User

    Feb 22, 2015
    I wish the Alzheimer's Society was far more aggressive and forward towards the needs of both those that have AD and their Carers - they could learn from some of the Cancer Charities.
  19. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    Just looked at it. Absurd from my ( our) point of view. What's the point in informing people they have dementia, if you don't support their Carers when needed? :confused:

    Not saying all people with dementia must have a carer, obviously it doesn't always work out that way....but the manifesto does give me the feeling of being an optional extra!

  20. RedLou

    RedLou Registered User

    Jul 30, 2014
    I think the AS has a conflict of interest here, which has become apparent to me recently. Certainly, I received much more proactive help when I rang the Prostate Cancer charity about my dad's cancer, than I did when I spoke to someone at AS about his dementia. The fact is, the AS exists to help and concentrate on the sufferers. I don't think that we, the carers, really feature very highly at all in their schedules or priorities. They are busy telling the world to befriend people with dementia so they don't become isolated; we know the reality of how very 'unfriendly' moderate to late-stage dementia sufferers are. They are all for pushing photos of sweet forgetful grandparents; we know the poo-smeared, paranoid, hurtful doppelgangers who take over those once-loved bodies.

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