I was advised to ask for a carer's assessment as my Crossroad's 3 hr weekly cover is coming to an end in December, due to lack of funding. The S.S. told the lady who interviewed me , that they could not provide cover for B. to allow me to have some respite, as that would mean that they were providing for him and not me. They said that they may pay for me to go to some activity if I provide a receipt. How can I go to "some activity" if they will not pay for cover. I have been told that they are bending the rules and avoiding paying for respite. CHC keeps getting knocked back too. I am exhausted and recovering from illness. I feel too weak to fight anymore. It would be easier to keep soldiering on and to stay in. Any ideas??

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  • So very sorry to hear what you are going through, do you have any family that can help. I know it is daunting for someone to look after someone that is ill, there are so many what if's that can happen and most are uncomfortable but it will never hurt to ask.

    Nothing your system is saying makes any sense, but sometimes you have to play their game, I am assuming that you live in England, is there no way one there you can call? A social worker? Hopsice? Let them know that you are no longer able to care for B, not that you need a break but that you are not able to lift or assist him. My mom once told our CCAC that she could handle my dad and they declined assistance to him, he is a stroke victim and need a lot of help, I called them back and basically told them that my mom was too proud to ask for help and that they need to give my dad help bathing and therapy. I actually insisted!

    Well that worked and we are back on track, you cannot lay back and accept what they are giving you, you have to fight for what we as humans deverve. When the door is open and your file is activated for these services you have to take everything you can, because when you need more help further down the road you will not get it

    If no one can help you physically, then get them on the phone to fight for you, seems like you are at your witts end and need both emotional and physical support, it is not a sign of weakness to ask for help.

  • I have a son who lives 2 away, works in London , with a young daughter who is suffering from a life threatening illness at the moment, (which has made me more stressed than usual!) One daughter has two small children, a job and a husband who has had ill health recently, and another daughter, who lives in the South, has a long term illness that she manages very well, in order that she can work part-time. My mother, bless her, is 95 and quite frail. They have all helped when they have been able to, but I am conscious that they are struggling themselves.

    I have written to our MP, Nick Clegg, pointing out that the NHS states in its explaination of the Carers Act , that providing alternative care, so that the carer can get respite is appropriate in some cases.

    I rest my case!

    Thank you for suggestions. X

  • WOW you all have your share, I am so very sorry to hear...Good for you that you wrote your MP, but dont stop, write to the newspapers and anyone that will listen.

    I get it that the carer needs respite, but what about the patient getting a little help as well. So the way I am understanding is that they will not provide you with assistance for B BUT they will give you respite....that just seems like we are running around in circles and not getting to the real problem...if they were to give you a few hours a day of help you will be able to rest or get other things done and will be able to care for B on your own....

    in Italian we say, turn and turn again, your still left with the same sh&*t

    God bless you my friend,

  • Very true. Thank you.

  • Unfortunately, Crossroads is a charity. I had a Carers assessment, they gave me £500 to join the gym, but couldn't provide anyone to sit with S, so I could use it. Oh, and it's taxed as well!!!!! Eventually, I did get a care company to come in and offer me a sitting service. I had to pay for that, until I got CHC. Thought it was a total waste of time and money at the time. The only good thing was, I did join the gym and even get to go occassionally. I only got one year's subscription, can't be bothered to go through all that again. Crossroads, did however, give me six months worth of counselling, which did help enormously.

    With wonderful hindsight, I would recommend you take their offer, if you can afford to pay for a sitter, or get a family member to help out. It gets you out, have an outside interest. Also, and probably more important, you get onto their books, so can get the extra help that I have had. I have even been given a Pamper Day out, kindly paid for, by an ex-Carer. She sent 10 carers for this brilliant day.

    One thing is for certain, you can't afford to give in. As big as a struggle it is, we have to fight daily, to get help for our loved ones and ourselves.

    You are the most important person in your loved one's care. YOU have to be fit and well. Only taking regular breaks allows this to happen.

    Lots of love


  • I dont understand how they can give you a 500 give vertificate to the gym but cannot afford to get extra help???? This is one crazy world we live in!!

    We should all start a worl wide group and advocate for those that cannot. Our leaders are more interested with helping create war and all the money that comes from it rather than help their own....makes me want to SCREAM

  • Me too x

    Let's scream away!!

  • Thanks Heady. I think I am just reaching the level of frustration with the system that you expressed some time ago. My head buzzes with incredulous wonder at their machinations, lame excuses, weak logic and apparent indifference!

    There, I feel better already !!! X

  • Well I'm over here in podunk USA so I cannot help you but to support you to keep fighting on.....You wear them down not the other way round....Someone somewhere will figure it out,,,,

    Keep on Keeping On darlin



  • Thanks. X

  • Well I've asked for a carers assessment on the advice of 'carers in Herts' SS have reluctantly agreed to do one, still waiting for an appointment, they sent me a form to fill in, in preparation for my interview, asking if I needed help with washing or dressing or meal preparation!!!!!! I thought the carers assessment was to help me! But long story short SS said that due to cut back they do nothing and to ring crossroads!! Basically seems like your on your jack jones! Just one brick wall after another, how is anyone supposed to cope!!

    Sorry I know none of that is any use to you, other than your not alone

    Sending a hug

    Debbie xxx

  • I hit every single one of these brick walls, felt I had knocked myself stupid in the end. Eventually I had to get a care company in and we paid them. I don't know if that helped me get CHC, or the powers at B, woke up and realised that S was in need of care. Shortly afterwards, We were assessed and got the funding. I am afraid, with our lousy system, you have to put your money, where your mouth is, to prove you are in need.

    I take it you are getting Attendance Allowance? This should pay for a few hours a week. Yes, I know, you already put this to use in at least four different areas! This is just one more to add to the list. If you have the money, it's certainly worth having those few precious hours respite.

    Lots of love


  • Thanks Heady, I know you understand fully how traumatic and difficult it is. I have calmed down a bit now. It's just the crazy system that makes me go bonkers!! grrr. X

  • P.S. Thanks, we get AA. It is used towards paying for B to be showered each day, as I can't do it because I have an arthritic back and neck. X

  • It's nice to know that I'm not alone Debbie, thanks for listening. X

  • This reading is so depressing and I can hardly believe what a terrible deal you lovely people are, or more to the point, aren't getting. It is beyond belief and seems we are going backwards instead of forwards in caring for vulnerable people, be they sufferers or carers. What is this world coming to, I don't have much faith that things will improve in the near future. I do hope that you soon get the support you need.

    Love Kate xxx

  • I had a carers assessment and was given £12 per week to pay someone to come in for 1 hour to do some housework.It was originally£8 but I fought because round here that is not the going rate.The lady who set it up said use it. for care but don't tell them you're doing that . So I did .

  • Its a crazy world where you have to mislead to get what you should be getting by right, isn't it? Talk about encouraging dishonesty! X

  • Hi Robbo1 do not give up kicking the wall eventually you will get the help you need. Sheffield, I thought had a good care system shows the press are wrong.

    Have you contacted your local hospice? They are always my first call for help when I was nearing collapse.

    If all things fail try your local CAB to discuss if they can help challenge the SS decision. Be prepared to explain what PSP is and the demands on you as a Carer. Also what CHC is (when I work for my local CAB I have to explain CHC once they understood it is a benefit for terminally ill they have started helping others claim) they may help with organising your application and appeal.

    Tell them you want help in getting SS to provide their statutory requirement to care for disabled and you believe you are being discriminated against because of you age and your husband's disability. Lay it on with a trowel they will react more if they see as a case of discrimination.

    Read Kevin1 post on CHC application and legal background.

    Good luck, best wishes to all of your family who seem to be going through a tough time. Tim

  • Thank you Tim. That is useful.X

  • I gree e with what hAS BEEN said

    lol jill


  • Thanks Jill. X

  • You and Georgepa....I'm so sorry.....He never got it and you are losing it....well to be fair US doesn't even consider it (that I know of) and now, new administration is going to go even farther and probably take what we did have a way.....survival of the fittest...or is that richest....!


  • Oh dear, poor you. I hope the new, "management" doesn't turn out to live up to all our worst fears. X

  • You just keep that in your prayers baby....keep that in your prayers....


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