1. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,701
    Hi everyone,

    Some of you may have read the 'So Bizarre' thread on this forum, but for those that haven't, I'm posting a new thread on this specific issue. I am hoping that many more will 'get on board', and maybe - just maybe - we can get the powers that be to take some notice.

    After 18 months of caring for Mil in our own home, and having had carers assessments that highlighted the need for us to take at least short respite breaks, about 2 weeks ago I attempted to organise just a weekends respite, so we as a family could attend a show my youngest daughter is going to appear in. Mil is sadly, no longer able to take part in and enjoy events like this. She is self funding, and I honestly didn't didn't think I would have an issue with doing this. However, I was wrong.

    My local Authority, along with it appears, several other authorities across the UK, have effectively removed the availibility of respite beds right aross the county. They have closed down the one LA run care home that could accomodate dementia sufferers and have stopped commissioning respite beds in private homes. Private homes run as businesses - none (and believe me, I've contacted a lot of them) will accept planned bookings for respite breaks - they say they cannot 'afford' to have a bed empty just 'in case' someone might want to book a respite stay, their beds are only available for permenant residents. In an emergency, you can phone round the homes and see if one - by chance - has a bed available that they are prepared to allow you to use at that point in time for respite, but no guarantee you will find one.

    This means that no carer in any of the LA's that have withdrawn the availibility of beds can ever book a holiday without their loved one. We can't, for example, get respite care arranged should we need to go into hospital. We can't have a break simply to stay in our own homes and recharge and recover enough to go on caring.

    I'm furious - and I'm scared. The thought that should I need it, I would be able to take the odd break is one of the things that has enabled me to continue to care for Mil at home - without it, I honestly feel that my right and my ability to provide this care is severely compromised. I don't know if I can go on, day after day, week after week, month after month, year after year, when I can never have even just 24 hours to take a break from the relentless stresses and strains of caring.

    So, having contacted local MP's, councillors, press, Assembly Members, carers associations, myself and others on the TP are trying to do something about this situation on a wider scale, using Social Media. Onlyme and CeliaW and a lot of others have contributed idea's and we are all busy facebooking and tweeting away.

    Please join us, if you can, and help to spread the word - even if you are able to access respite now, if this sort of policy continues to be adopted by local Authorities, you may not be able to get respite for much longer. We have a poster (see below) and the hashtag #FightForRespite - please share it out if you possibly can. Tag Norman Lamb, Minister of State at the Department of Health - I spoke to him on Radio 5 Live this morning about this issue. (you can listen to the programme on this link, http://www.bbc.co.uk/programmes/b054p0cx#auto - I spoke to him at about 45.30 minutes in) He went on about funding being available, but had nothing to say about the increasing practise of removing the availibility of actual respite facilities. Tag any and every celebrity/organisation you know of who has shown an interest in supporting dementia care. Post the image, with a short explanation to any support groups/pages on Facebook that you think might help, and ask your friends and followers to re-post, share and retweet.

    Thank you xxxx
     

    Attached Files:

  2. CeliaW

    CeliaW Registered User

    Jan 29, 2009
    5,655
    Hampshire
    Be great if people could post details on here if they see that any media or "celebrities" share their post, retweet or cover the topic - would then give some idea of uptake and interest.

    Ann, have you put it on the local paper FB page? Any more news on the article? x
     
  3. Essie

    Essie Registered User

    Feb 11, 2015
    566
    I think you have a real fan in Nicky Campbell Ann, he sounded really genuine when thanking you for the points you made - I have tweeted to various 'names' on Twitter to try and get this trending. And i thought of these words to describe you Ann -

    “People do not decide to become extraordinary. They decide to accomplish extraordinary things.”
    ― Edmund Hillary

    Who knows where this could go and what could be achieved to better the lives of so many in desperate need. Well done Ann.
     
  4. Kriss

    Kriss Registered User

    May 20, 2004
    513
    Shropshire
    Do you have a link somewhere on social media where I can share this?
     
  5. Beate

    Beate Registered User

    May 21, 2014
    11,713
    Female
    London
    I would like to retweet this on Twitter as I can't seem to download the pic myself so can someone who has tweeted share their Twitter name please? You don't have to do it publicly.
     
  6. CeliaW

    CeliaW Registered User

    Jan 29, 2009
    5,655
    Hampshire
    Beate, have sent you a private message on Twitter.
     
  7. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,701
    Beleive it or not, Celia, the local paper seems to have neither a fb page or twitter!

    I have contacted the Guardian, and am hoping they will run something and help us promote this. The phone number is 020 3353 2000 - just in case anyone else feels that they can also give them a shout - the more noise we make, the more notice (hopefully) they will take :p

    On twitter, if you search #FightForRespite, hopefully the tweets I and others have done should come up - if anyone is still unable to find them then I'm happy to pm a link to them :)
     
  8. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,302
    Cotswolds
    Ann, you were fab on the radio. Really made your point, but in a measured sort of way :)

    Have posted campaign poster on FB and waiting for daughter to tweet it :D x
     
  9. connieonny

    connieonny Registered User

    Feb 9, 2010
    77
    uk
    Thank you for posting this.
    We hit this problem 5 years ago when our LA reduced the money they paid to care homes. Although my MiL was self funding, the care home couldn't afford to keep a respite room which may not be occupied for 52 weeks of the year. The only places we found for pre-bookable respite were in Homes that could not fill their beds. You have to ask yourself why these Homes couldn't fill their beds. How can you place someone you have feelings for in somewhere so unsuitable?

    My MiL is now in permanent care due to behaviour problems very similar to those you talk about in respect of your own MiL. She lived with us for over 7 years, and we would have liked to have continued as her carers to the end of her life, however unfortunately you reach a position where it is impossible to both physically and mentally to carry on. You can only go for so long without proper sleep and though, like you, we were fortunate in having day care of high quality, there was no support available elsewhere and in particular in the provision of bookable respite care.

    Our experience is that the elderly are a low priority, as is mental health. Put them together and you really are at the bottom of the pile. The whole system is not fit for purpose.
     
  10. Beate

    Beate Registered User

    May 21, 2014
    11,713
    Female
    London
    Ok, after a bit of fight with Twitter, my message is out there.
     
  11. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,701
    Thanks Lindy xxx

    connieonny - I'm horrified to find this situation has been going on for so long, and I am so sorry - though I fully underestand why - you were not able to carry on as carers :(

    Glad you got twitter sorted, Beate :)

    Finally got hold of the reporter - he seems somewhat frustrated that this story isn't out there yet - its with the newsdesk editors and possibly STILL awaiting a straight answer from the council. He is chasing it up - and I'm back to waitting to hear from him what the state of play is :(
     
  12. CeliaW

    CeliaW Registered User

    Jan 29, 2009
    5,655
    Hampshire
    Ann, look on the bright side, he can now include the hashtag, picture and a link to your radio interview!
     
  13. connieonny

    connieonny Registered User

    Feb 9, 2010
    77
    uk
    It is tearing my wife apart that we were not able to keep Mil with us. Perhaps it was never going to happen, but with correct support and good quality, regular breaks, well who knows?

    If the reporter needs to talk to other people, we are willing to give our experience. Just PM me. You did very well on the radio interview. Unfortunately we don't have access to these new technologies such as Twitter, so we shall hopefully drop Mr Lamb an email in support of this.
     
  14. piph

    piph Registered User

    Feb 4, 2013
    1,530
    Northamptonshire
    I've not commented, but have been following the So Bizarre' thread since the beginning. I've also shared the poster and the #FightForRespite on my FB page, don't do Twitter. I've had a few shares and also shared in on the Dementia Carers groups that I belong too. Well done you for highlighting this, let's hope it goes 'viral'.
     
  15. Essie

    Essie Registered User

    Feb 11, 2015
    566
    Hi Ann, just checking and Wrexham has a Twitter feed (@wrexham) linked to their website Wrexham.com carrying local news etc. - it has 20k followers so worth putting a link to your radio appearance on there maybe? They are also on FB - Wrexham.com. Shame the newspaper doesn't have anything as that would be another good link to spread the word, especially locally.
     
  16. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,701
    Thanks Piph and Essie - Essie, I've tagged Wrexham.com in the twitter posts, but yep - its worth sending them the link - might do it on their Facebook page :)
     
  17. RedLou

    RedLou Registered User

    Jul 30, 2014
    1,162
    I've had some shares from Facebook, too. Well done, Ann Mac et al.
    This is not my personal problem, as I am a long-distance carer, but reading what you 24-hours carers experience makes me so angry on your behalf. Hats off to you all. You are the backbone of the universe! x
     
  18. Chaucer 1931

    Chaucer 1931 Registered User

    Mar 30, 2014
    226
    I'd just like to say I listened to the programme this morning ,Ann you were amazing,so very eloquent and articulate,you are a natural at campaigning. Shame on Norman Lamb,with his well rehearsed rhetoric,I did imagine him squirming rather uncomfortably in his seat!
    Onwards and upwards for the
    #Fight For Respite cause!


    Sent from my iPhone using Talking Point
     
  19. Beate

    Beate Registered User

    May 21, 2014
    11,713
    Female
    London
    I've just realised that I shall be meeting Norman Lamb on Monday 13 April pm. The Dementia Action Alliance are organising a talk with members of the political parties - Jeremy Hunt and Andy Burnham will be there too. I know London is a bit far for you but I wish you'd be there as well, Ann! You'd give them what for. If anyone is interested in the details, let me know. I was invited via the Alzheimer's Society. They are even providing me with transport.
     
  20. Hibni

    Hibni Registered User

    Sep 16, 2013
    46
    I don't post very often but have followed the Bizarre thread with interest. I've shared this on Facebook. I haven't needed respite for Mum yet, but may do one day. Thanks for all the effort you've put into this Ann and I hope you get the needed respite care for your MIL.
     

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