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. CeliaW

    CeliaW Registered User

    Jan 29, 2009
    5,655
    Hampshire
  2. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,701
    OK - got a copy of the local paper. About a half page piece, unfortunately NOT on the front page, but on page 4.

    It sets out the situation pretty clearly, states the reason why I tried to book respite, says about the offer to extend Mils day care on the upcomming date when I tried to book it for (so we could attend a show youngest is in) and does mention carers 'burning out' without the provision of regular respite breaks - it harps on a bit about me being an 'ex-professional' carer, which I don't think is relevant, but otherwise is not bad - though I would have liked to see it presented in a more hard hitting manner.

    The bit that has really angered me is the response from (and I'm giving details because its published in the paper for all to see, so I don't think I'd be breaking any rules) Andrew Figiel, Wrexhams head of Adult Social Care/Director of Social Services, who says he 'understands concerns raised about the availability of respite care for people with dementia' :mad:

    Quoted directly from the paper

    "Respite Care is available for people with dementia and we never decline requests for respite care as there are options available"

    (So when, on the multiple occasions I have spoken to social workers, CPN's, councillors, care homes, and staff from adult services, have I repeatedly been told that no, nobody knows of any respite beds that are available for booking or how exactly I can organise respite? Exactly What are these options?? Because no one has been able to tell me what they are or how I access them)

    He goes on to add that there is no shortage of funding, and that they are currently "reviewing our commisssioning of planned respite care so we can plan better in future, so there is a greater certainty of beds available" - what he doesn't say is that whilst they are reviewing, they are not commissioning beds and have stopped the booking of respite for all 'new' users of the local authority care home that they are in the process of closing. He also doesn't say that this has been the situation, with no one who hasn't previously used this specific home being able to book respite, for the last 18 months at least!

    He comments on dementia being an 'increasing demand', that they are 'working on', that this includes the 'block booking of respite beds with providers' (Again - doesn't say when or who with? Or at any point admit even that this isn't happening right now); insists that funding is not an issue, that council budget cuts have had 'no impact whatsoever on these services or any service we provide for these people who are vulnerable and assessed as being in need" - but that ignores the fact that as they are not block booking beds, as they are not covering the costs for any 'new' none-self funding clients (i.e. those that were not using the service at the time they stopped accepting new bookings) and are now choosing not to comission beds in the private sector, what has happened to the funds that are supposedly available for this service in the budget?

    He addss that he and Cllr Joan Lowe were 'more than happy' to meet with me to discus the 'situation and future plans'. REALLY??? First I've heard of it! Will be seeing now how easy that is to set up, especially given that I am STILL waiting for Figiels 'second in command' to phone me, as I was promised he would do, at the beginning of the week!

    Its nothing but a load of rubbish - same old, same old - yep, they will reccommend respite, yes they will pay the actual cost of it - but a refusal to admit that there is nowhere, no facility at all, that you can book a respite break in.


    ARRRRGGGGHHHHHHHHHH :mad: :mad: :mad:



    "
     
  3. RedLou

    RedLou Registered User

    Jul 30, 2014
    1,162
    You could write a letter for publication in response. (If you've got the energy to make the time, that is...) In a way, Ann, I'm more shocked that the AS has done so little to take this up, or even respond in here. Every so often we get the Talking Point newsletter updates, all cheery and pointing us at the 'acceptable' threads, but when it comes to the crunch -- ??? It makes me feel we're interlopers on here, extra bodies they have to pay lip service to, just as everyone else pays lip service to us. Bottom line: we're not the people with the illness which is their raison d'etre. We're just the collateral damage.
     
  4. CeliaW

    CeliaW Registered User

    Jan 29, 2009
    5,655
    Hampshire
    Ann, I can understand your anger. Maybe reply to the online article asking him to give details of number of beds currently available and where. Ideally you need another radio interview, maybe local radio, but a) I doubt you have the time for that and b) that this guy would consent to a broadcast debate. I think we are all aware that, although we greatly admire and appreciate all you are doing, this is putting unneeded extra pressure on your already stressful life xx
     
  5. piph

    piph Registered User

    Feb 4, 2013
    1,530
    Northamptonshire
    I don't think that you could do better than to copy your previous post as a letter in response, maybe with a little editing, to send to the paper. It responds to each of Andrew Figiel's points, and is polite, but firm. I think you should do it!
     
  6. CeliaW

    CeliaW Registered User

    Jan 29, 2009
    5,655
    Hampshire
    I shared this campaign with Norrms and his various Purple Angel groups etc and one lady, a retired nurse, has posted

    "Can I make a suggestion.I am a retired nurse with degree in Nursing Older Persons and Specialist Practice in Dementia.
    In my last year working I found it frustrating and upsetting to go visiting patients and their loved ones and have nothing to support them with other than your listening time and supportive advice where possible. Respite was offered but never available. I've been thinking of an alternative.But dont know how families would feel about it.Would love to offer Respite in my own home."

    I haven't replied but it will be interesting to see if it gets any comments. I think the legal, insurance and other factors would make it unworkable.
     
  7. mancmum

    mancmum Registered User

    Feb 6, 2012
    388
    Challenge that councillor

    If the councillor, your elected representative says there is respite. Challenge them to sit with you while you try and set it up. Try and book: respite with good notice e.g. for the peak months of the school summer holidays; respite at short notice...say three days for a funeral at the other end of the country; respite for someone with challenging behaviour. I bet you won't find it. Make that councillor eat their words.

    If they do you will almost certainly find respite is not available and that is newsworthy

    If they don't then they are chicken and newsworthy

    Remember the relative who got to Tony Blair complaining about lack of facilities in the run up to a previous election.
     
  8. Pegsdaughter

    Pegsdaughter Registered User

    Oct 7, 2014
    129
    London
    Is this something for The Carers Trust? Just a thought


    Sent from my iPad using Talking Point
     
  9. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,302
    Cotswolds
    I can't speak about any specific organisation, but I think part of the problem may be that organisations that are set up to support carers, are in fact at least partly funded by the local authority. This makes it hard for organisations apparently focused on carers, to actually speak up. In addition, they are often registered as charities, which makes 'political' activity difficult for them :(

    Just thinking about it and trying to understand why there seems to be an underwhelming response from organisations that should be supportive........
     
  10. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,701
    #50 Ann Mac, Mar 13, 2015
    Last edited: Mar 13, 2015
    OK - so I phoned and asked (firmly!) to speak to Andrew Figiel - and guess what?

    I was connected straight away!

    He started off in an incredibly pompous manner, as far as I am concerned, refusing to let me speak and going on (and on and on) about funding being available. I'm afraid I forgot to be polite and eventually managed to interupt and told him that he had been blethering on without allowing me to have a say, and I'd appreciate the chance to get a word in edgeways.

    He told me to 'go ahead and speak' (nice of him - and yep, I did say that to him!), and AGAIN I pointed out that my complaint revolved around the availability of beds and places.

    But that isn't a funding issue, he said.

    I pointed out that commissioning beds costs money, and if it wasn't being done then obviously funding was part of that. And again, I said its about availability (I may get that tattooed on my forehead!)

    He said that there were alternatives - I asked what they were?

    Extended day care, emergency respite or a carer coming into our home, he said - I pointed out that 'extended day care' was not a respite break, that emergency respite was not applicable and he himself said that carers coming in wouldn't be suitable for all. None are in any way, shape or form a comparable 'alternative' to booked respite to enable the carer to have a planned break. He agreed. By now I felt that he was a lot more polite and less pompous than when the call started.

    He made a comment about me going to the 'press' - I said I had done that only after 3 days of not getting a straight answer or any useful information from Adult Sevices, despite me speaking to goodness knows how many people - and after the information that i eventually found on the councils website turned out to be completely out of date and wrong. He didn't mention that again.

    I asked him what was being done - and (SUCH a coincidence!) - he told me that next week, Charlotte Walton, head of services for the elderly, would be in a series of meetings to discus and plan how they were going to be block booking a number of beds in the private sector for planned respite breaks for carers.

    The promise of 'meetings to discus' isn't something that I have an awful lot of faith in - so I asked for a timeframe for something actually not being just 'discussed' but being put in place. He repeated that they would be meeting about this next week. I said that this area had now been without a provision for bookable care for approximately 18 months and that I didn't think a time frame for a solution was an unreasonable request.

    He eventually told me that he was 'confident' that something would be sorted by next week, and that 'Charlotte' would be contacting me to let me know what was happening. I asked could I expect to hear from her by Friday - that gives them their week - as I was still waiting for the promised call I was suposed to be getting from his under manager last Tuesday? A bit of bluster, and 'hahah - you know what its like, people are up to their necks in it' - Oh yes, I know all about being 'up to your neck in it', alright :rolleyes:

    I pointed out the wider implications, that other carers are in the same situation, some worse - he agreed and said it would be sorted for ALL, not just me.

    The call ended with him very politely inviting me to contact him direct if I had not heard anything by Friday and an assurance that he was 'keeping a close eye on this'.

    Even if they do manage to get something sorted, I am well aware that this is only for this area, and that there are a lot more of us carers out there in this situation. Being honest, I really do think that the fuss I've kicked up here has had an impact - I really think this council were trying it on. Which means other councils are too, and I am absolutely committed, EVEN if this issue is sorted for me, to continue doing what I can to help other carers facing this. I am absolutely on edge with stress and worry after this last two weeks, none of us, NONE of us need to have to waste what little energy we have fighting for such a basic and essential service - it needs sorting across the country, once and for all.

    And we'll see what happens, here at least, next week! If there is a positive outcome, at least we know it is possible to get these idiotic councils to 'see the light', if the right pressure is applied. And thats something that all of us can build on, hopefully :)
     
  11. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,302
    Cotswolds
    Wow Ann :eek: Well done, you are an absolute star. I am just so sorry that it has taken all this effort just to get the promise of a discussion :mad: Still, I agree, it does sound as though they are too scared of you not to provide respite :D xxx
     
  12. lizzybean

    lizzybean Registered User

    Feb 3, 2014
    1,398
    Lancashire
    Ann for Prime Minister I say!! I listened to the 5 Live programme & although "Sue from Wrexhams" input yesterday was alluded to by Nicky Campbell it wasn't discussed. Interesting tho!
     
  13. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    10,206
    Merseyside
    Well done Ann :D
    He won't underestimate you again!
     
  14. RedLou

    RedLou Registered User

    Jul 30, 2014
    1,162
    You, girl, are a star. :D
     
  15. Margaret79

    Margaret79 Registered User

    #55 Margaret79, Mar 13, 2015
    Last edited: Mar 13, 2015
    Too tired and worn down at the mo for getting involved but did send you a pm Ann Mac with the name of a company that do have bookable respite beds. Costs £780 for MIL who is self funding, brilliant carers and I've already booked April, June, September and December.

    Please pm me for details of company
     
  16. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,302
    Cotswolds
    #56 Lindy50, Mar 13, 2015
    Last edited by a moderator: Mar 13, 2015
    Interesting....this was the company that provided bookable respite around here some 12 years ago.....so they seem to have a long track record :)
     
  17. mancmum

    mancmum Registered User

    Feb 6, 2012
    388
    Congratulations Ann

    Its good to see someone get somewhere, although of course the proof of the pudding is in the eating. Of course this is something that needs to be replicated in other council funding districts. I must admit that I didn't try to seek respite via the council, mainly because of my Dads specific needs I wanted somewhere that looked like a 4 star hotel and that was not available within my local authority area.

    It had to appear to be good quality for him. MIL stayed in local authority funded intermediate care and while staff were nice enough the physical environment was not as good.

    Perhaps we could set up a a thread whereby people can post their experiences authority by authority.
     
  18. CeliaW

    CeliaW Registered User

    Jan 29, 2009
    5,655
    Hampshire
    Oops, a lady applied to join the FB group. I scrolled and clicked on Accept but it carried on scrolling and the request disappeared. I am really sorry, hope it's someone from here who applied in last hour or so...
     
  19. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,517
    Ireland
    Golly AnnMac - well done you! [​IMG]

    Your poster is winging its way around FB, even from here. Most of my UK "friends" have shared it on their pages, and now their friends are sharing it on. And some of my friends here have shared it on too, and on and on it goes - hopefully it will have results across the country.

    Bad as things are here, the system is fairer I think. The Health Service Executive is responsible for respite care (and for any funding for nursing home places) nationwide. There are actually very very few "public" or Govt. owned nursing homes - and none run by Local Authorities. The vast majority are private. The way it's done is that (unless you are wealthy enough to pay the average of 1,000 per week that they all cost, whether public or private) you are assessed on 80% of your income and assets and for a couple (where one is still at home) 7.5% of the value of your home for three years - so 22.5% of the value altogether. Then the Govt. pays the rest of the cost. For my husband, it works out that I pay 241 euro per week of the 875 euro cost of his nursing home. It leaves me pinching pennies very tightly - and it took almost 5 months from when I applied for funding for him, to the funding being released so he could get the care he needed - but it does seem a fairer system, in that the same rules etc. apply nationwide.

    Very best of luck with your campaign. I know you need the extra stress like you need a dose of nits - but at least this battle is one you can win!
     
  20. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,701
    First Off, Margaret, I'm so sorry - I did see your pm, and meant to reply to say thank you to you, but got caught up in a lot of other stuff, yesterday and it slipped my mind :eek: Thank you hun - I've made a note of the links, and if I get nowhere with the council next week, I will probably end up giving them a call.x

    Thanks everyone - I am being cautious though, as I do agree with Mancmum - the proof of the pud and all that. The very fact that they created this situation in the first place, the misleading responses I got originally, the attempts to placate me, fob me off and the trying to sidestep responsibility by suggesting its not THEIR problem if private care homes choose not to provide respite, havent exactly left me feeling particularly trusting towards the LA :( I'm hoping that they are going to respond appropriately, but not banking on it.

    And, obviously, it isn't just this area - so many are affected, right across the UK by the sound of it. I wonder if, between us, we can come up with a letter/email, standard format for all but that also could include individual situations, that can be sent out to all our local MP's, Councillors, etc, with the election coming up? One that even those of us who are so exhausted and worn down would be able to just 'copy and paste', for the most part, that could really highlight this issue? Local press could be CC'd in, and if any of us go to carers groups, maybe we could pass it on to other carers there and ask them to also send? Those of us who are not in an area where this situation has happened, who can spare the time to help, could perhaps tailor the letter to express concern that it could happen, and emphasize how important it is to have the availability of respite safeguarded alongside the funding of respite? Its just a thought - but maybe its a relatively small thing we can do that would have a decent impact? I don't mind trying to put something together as a base, and then all can chip in with idea's for wording and format - or if one of you are really good at that sort of thing want to put something together?
     

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