1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

  1. lizzybean

    lizzybean Registered User

    Feb 3, 2014
    1,398
    Lancashire
    I have posted a comment on the So Bizarre thread as at the time I didn't know this thread was here. I just wish I had a FB or twitter a/c but to be perfectly honest I don't want either.
    I would love a local politician to come a-knocking with the elections coming up. They would be invited in for tea & cake & the door would be locked behind them & if I didn't get satisfactory answers.......

    Shame we never see any!
     
  2. dottyd

    dottyd Registered User

    Jan 22, 2011
    1,066
    n.e.
    Just listened to the broadcast. You were excellent Ann and you kicked in roundabout the 40 minute mark...maybe just after.
     
  3. DointhebestIcan

    DointhebestIcan Registered User

    May 24, 2014
    9
    Just listened to your interview. You made your point so well. Thank you.
    I've retweeted and will post on FB.
     
  4. sleepless

    sleepless Registered User

    Feb 19, 2010
    3,232
    Female
    The Sweet North
    Ann, I salute you.
    Have listened to the radio article, you were really calm and got your points across well.
    Sorry I don't do twitter or FB, but will think of any other ways to bring this to others' attention.
     
  5. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,701
    I think its absolutely brilliant that so many of you are spreading the word on this :) Thank you so much!

    Beate, I wish I could come with you, even if its only for moral support! And I would like to try and get a straight answer from him, about availability, which doesn't involve him telling me that funding to cover the costs of a respite stay is there, that carers assessments to identify a need are there - but that tells me how he is going to ensure that councils step up to the mark and take responsibility for the actual provision of beds, whether it be by way of an LA run facility or by commissioning in private homes. There has to be a clear and consise way of asking that, that doesn't give him (and others) the wriggle room to hide behind the rhetoric :( Maybe if someone could come up with the right phrasing, we could bombard with emails or tweets (if we can get it short enough) him and any other Government Ministers who should be doing something to help?

    More chasing up, today, I guess - back to the councillor who told me that I would be getting a phone call from the deputy head of adult services - you know, the one who was going to phone me when he came out of the 'meeting' - the meeting that was being held LAST TUESDAY :mad: If I don't hear from the Welsh Assembly today, then I will start chasing them on Monday. And I'll go through the list of contact numbers I've collected, and see who else is due for a reminder. The rudeness so many have shown in not bothering to contact me when they said they would is really making me cross :(

    Keep spreading the word, everyone - and Thank you xxx
     
  6. Onlyme

    Onlyme Registered User

    Apr 5, 2010
    4,999
    UK
    Even if extra funds are made available where are the respite beds going to be found now that private NH have filled their respite beds with permanent residents?
     
  7. mancmum

    mancmum Registered User

    Feb 6, 2012
    388
    Absolutely Agree

    I absolutely want to concur. When I took on caring for my father two years ago. I foolishly thought that say once every six weeks my husband and I might get a respite break. I have until this year used by children to provide respite but last month I tried to use the private sector. For the privilege of paying 1,000 a week I was able to book in the gap between one long stay resident departing and another arriving. Even then I was told that the booking was not guaranteed.

    The system does not allow you to take a planned holiday or planned break for any other reason.

    I am unable to easily participate in the normal events of a family life. I know that my Council is making cuts across the board in so called non-essential services. I know that the last person who stood as a councillor in my ward couldn't tell me what 'adult services' were.

    I give quality of life to my father and all I want is to sometimes release my husband from sharing the caring for an odd weekend. Is that too much to ask.

    Is the facebook group set up already? I couldn't find one to share a post to. Please keep on raising this issue. In the period before an election you can go a long way in raising an issue.
     
  8. mancmum

    mancmum Registered User

    Feb 6, 2012
    388
    Could I suggest a 38 Degrees petion as a way of raising the profile for this

    Just a suggestion. 38 degrees maintain lists of members interested in currently affairs and justice issue. I have seen campaigns go from 0 to achieving their objective in a matter of weeks. Obviously many of those have been small single issue achievable objectives but what about demanding that every council has x number of respite beds per head of population to give respite to carers.
     
  9. Moonflower

    Moonflower Registered User

    Mar 28, 2012
    775
    It makes me so angry that when people are trying to decide whether or not they can care for a parent with dementia they are told they will be able to take respite, only to find that it doesn't exist when it's too late and they are stuck in an uncaring system.

    This means, for example, that anyone with children and elderly parents needing care, cannot plan to take their children away on holiday unless another family member steps in. It's wrong and unfair.
     
  10. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,701
    I know, Lemony - thats why LA's need to commission beds, to pay a retainer (which could be re-claimed at least in part, from the fees paid by self funders) to ensure that a bed or beds are available soley for the purpose of booking respite.

    Mancmum - we haven't set up a specific facebook page - though I'd be interested to see how many of us think that's a good idea? - what we have been doing is sharing the poster, along with an explanation, on twitter and facebook - posting it to pages and profiles of people and organisations who can either potentially support us, or who we hope to influence to help in some way. And we are asking our friends and followers to share it - it would be good to get #FightForRespite trending. I think the majority of people who have retweeted it from my post on twitter are members from TP so far - but on facebook, its been 'liked' and shared by people I don't personally know, but who have seen it posted into groups like the one run by the local carers association. I will absolutely now look up 38 Degrees Petition - i've never heard of that before - thank you x

    I agree, Moonflower - from the very start, when Mil moved in, we were told that we need to think about/agree to respite - never, ever was it indicated that we wouldn't be able to have it because there simply are no beds, not until I tried to book it. Its so underhand - and the response from the council, that its 'up to private care homes to offer respite' is nothing more that the council washing their hands of a problem, even though its their actions that have caused it :( The problem is, there is no provision within guidelines or legislation for any LA to HAVE to ensure that beds are available. they can throw carers assessments and the promise of funding at us all day long, but without them ensuring availability, both assessments and funding are as much use as a chocolate teapot :mad:
     
  11. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,517
    Ireland
    I'm in Ireland, where the situation is (thankfully!) different. We don't have much that is better - and the situation is pretty awful here but thank God, there is still some (limited) access to respite. A full time carer is entitled to four weeks respite per year. This is paid for by the Health Service. But availability is very limited, so you have to book well in advance (through Public Health nurse or CPN). Thankfully, my CPN, before my husband went into full time care, realising how dire our situation was, was able to get me a couple of extra weeks emergency respite - there is normally no facility for emergency respite. If you become ill and need to go to hospital, your "caree" has to be admitted to hospital too!

    I have downloaded the poster and will share it with my FB friends, as a lot of my friends are in the UK - and will ask them to share it on. Well done on taking this on.
     
  12. mancmum

    mancmum Registered User

    Feb 6, 2012
    388
    Link to 38 Degrees to allow people here to become members

    http://www.38degrees.org.uk/

    Personally, I would probably challenge political parties to include a commitment to x number of respite beds per head of population within their manifestos. It would be useful to have some help draft an appropriate demand especially in the light of health care in Manchester now being devolved from central government.

    Keep the demand simple, keep it achievable. Make it one that no one can step aside from.

    I don't know what the right number might be but I do know that the next few weeks are a sweet spot for making politicians step up to the mark.

    How do the costs work out. Would it actually be something that didn't cost council's that much because a number of people using the resource would be largely self funding anyway. I for one would use it regularly and it would be beneficial to my Father's care. It would keep him at home with us for longer and at the point that care became necessary then it might mean he could transfer to somewhere which was familiar to him.
     
  13. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,701
    On the fly here - story in local paper today - journalist has asked to be kept updated about anything that happens. On line edition hasn't yet been updated - will post a link when it is.


    Facebook group started - https://www.facebook.com/groups/625699834198652/ - please, feel free to join - we need all who can spare the time and energy xxx

    Chased up councillor - he did not seem impressed that I haven't received the phone call - again, being chased up by him.

    Norman Lamb responded to tweet - but still no answer to what he can do to make councils take responsibility for the availability of beds - so I've asked again :rolleyes:

    Another councillor got in touch and is busy retweeting, which has caught the attention of a couple more - he is also chasing this up with Head of Adult services

    Mancmum - am getting nowhere trying to find out about costs - so far - keeping on trying though :) If anyone can help with drafting the demand you speak of, it would be fab - and thanks for that link - I will chase that up too :)

    New floor going down in front room here, so will just be popping in and out, whenever I can today x
     
  14. RedLou

    RedLou Registered User

    Jul 30, 2014
    1,162
    The Alzheimer's Society ought to have figures about how many respite beds are needed for dementia carers.
    Have they actually done anything to help you yet, Ann?
     
  15. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,701
    Local rep got back in touch to say that he had tried to track down respite in the area, and that I was right - you can't book it anywhere - and that's about it, Redlou :(
     
  16. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,302
    Cotswolds
    Well done Ann :) This is where I wish I were more up to the mark with social media....I'm not even sure how to 'share' on FB, although I've got my daughter and a couple of friends doing it for me. Daughter is no longer on twitter, by the way :(

    Not sure whether to post this.....but I know from experience that it's not wildly difficult for local authorities to set up contracts with private homes to provide respite beds. We had just such a system in this county when I worked for the local authority....one bed for about 350,000 population.....always full.....there were three available beds by the time I left. The contracts team drew up an agreement whereby SS paid the home a retainer, which was refunded in the case of the beds being booked....which they always were. So far as I know, no-one lost out ;) SS could monitor the quality of care offered, which was an ancillary benefit, and the home knew the beds would always be used :cool:

    Sorry, I don't know for sure whether these respite beds still exist....am meeting with a social worker next week so will try to find out.
     
  17. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,701
    Thanks Lindy - that is really helpful - and its the same sort of scenario that a care home manager I spoke to told me could work. I've been told that respite beds were always fully booked when they were available in this area too - so the councils all must be fully aware that this sort of service is both needed and well used when it is provided - they all had to have known what the consequences of stopping it would be!
     
  18. canary

    canary Registered User

    Feb 25, 2014
    10,531
    Female
    South coast
    Do you know what? I think someone is missing a business opportunity here
    Supposing someone set up a small CH just for respite and called it The Golden Oaks Hotel for Older Holidaymakers (or something - but NOT a CH ;)) then we could book "holidays" for our carees in advance. Im sure it would always be fully booked.
     
  19. Beate

    Beate Registered User

    May 21, 2014
    11,713
    Female
    London
    The Best Exotic Marigold Hotel for the Elderly and Beautiful, just not in India and with a few more nurses!
     
  20. lizzybean

    lizzybean Registered User

    Feb 3, 2014
    1,398
    Lancashire
    There was an item today on Nicky Campbell's breakfast show, literally caught the last 5 mins & there was a lady on there who was a carer & then a gent came on talking about the problems of caring for his Mum. I think it was sparked by Terry Pratchets death & I don't really know the content but I will listen later but I have absolutely know idea how to post a link!!!
     

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