Caring for the carers

On 1st April this year the "carers bill" became law. So far I have not seen any improvement in how carers are treated but I have been "assessed". Nowhere on this assessment form did I see a question about the carers health. I have had Parkinson's disease for over 9 years and I am caring for my husband with advanced CBD. I know a number of PD sufferers in the same position. If they gave us a bit more help we could get on with saving them money by keeping our loved ones at home for longer

6 Replies

  • Kathie48 the system is all wrong, surely carers health should be a major issue? Xxxxx

  • I agree with Yvonne, if we aren't looked after properly how on this earth are we supposed to keep on caring for our loved ones, it seems we are not allowed to be ill, at least that's how it feels to me. It worries me at times!

    Love....Pat xx

  • Hi Carers Act only applies in England. Google ; The Care Act - summary of provision is provided by Carers Trust - I have found local Carers Trust very useful and good source of help.

    Wales already has combined care between local gov and NHS. I think Scotland and Northern Ireland have different Provisions.

    Best wishes Tim

  • Come on Kathie, they have assessed you, what more you do want!!!

    Oh, for someone to actually give you the help you need, or tell you where to go to get it, for someone, even to explain, what help is available. No ------- chance!!!

    All we get is, "I will refer you to so and so". It's when, after several referrals, that you are back to the first person, that you know what a load of rubbish this wonderful "Carers law" is!!!!

    Lots of love


  • That's exactly what they were doing. Bill went into hospital for observation after a fall. The next day an OT said they would not let him out until he had a proper care package and they would fund it. Two weeks later they said he was coming home and that we would have to fund the package (4 visits by 2 carers everyday) . That's when I refused to let him home.

    Thanks for your time and advice. It is nice to know that people are thinking of us.

  • Kathie, we all care about you and your husband. We all rely on one another, to get through this mess, that PSP has created, and for you, Parkingsons as well! Some mix!

    Have you phoned the PSPA yet? They may be able to help, as well as the Parkingsons Association!

    Keep fighting, if you have the strength!

    Lots of love


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