PIP, DLA and AA
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I can't stop worrying

TopkittenTopkitten Member Posts: 1,263 Pioneering
I last heard about my PIP assessment on 21st June, a text saying they have received my application. I tried calling the help line twice today but got disconnected both times due to "No operators available". My worrying is through the roof mostly due to abysmal treatment (or lack of it) from the health services at the moment and also because I have waited almost as long for an OT assessment and still have no idea when this is likely to happen. Last week I tried calling my GP surgery but they wouldn't let me speak to a doctor about medication, instead I got the Practise Manager whose idea of help was to only let me speak to their car support person and that also went nowhere. Now, to make matters worse, I got an information pack through the post today telling me I have to change my car and last week a letter saying I needed to get my car serviced. I am still trying to come to terms with being made housebound and not being told by the GP that no increase to medication will happen in the future until I was already housebound with pain.

I am so angry and disgusted with the GP for not telling me this 6 months ago and so desperately depressed that al I want to do is to stop wasting the money my mum left me, to die and leave the rest to my kids (who want little, if anything, to do with me any more).

I get only one visit a week for an hour from the cleaner I arranged through Age UK and no telephone calls and now, with no post or notifications, I just feel completely excluded from my future and under pressure to make decisions I cannot make as I don't know where I stand.

My problems with sweating and then shivering with cold now seems to be everyday and every few hours (day and night) and a call to 111 got me another call from a doctor who was so stupid I had to say everything 3 times to him to get him to understand. His final response (the third time he said it) was for me to get referred to the Pain Clinic despite me telling him (also 3 times) that I was referred 2 months ago but, as I am housebound, was immediately discharged when I told them I could not attend a seminar or appointments. I ended up hanging up after saying I would kill myself, not that anyone bothered to contact me after the call to try to stop me. Unfortunately the medication OD was ineffective, I simply cannot do myself any damage with the medication I am currently on.

How am I supposed to move forward and keep going when no one will even tell me what is happening?

TK
"I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.

Replies

  • littleruthie123littleruthie123 Member Posts: 490 Pioneering
    Hiya I really feel your pain .Ive had a six month wait .this last month has made my anxiety really awful .I did get the result I wanted eventually .just wanted too make a positive outcome for you. I pray you get your answers as quickly as possible x
  • littleruthie123littleruthie123 Member Posts: 490 Pioneering
    P.s my assess t was july the 2nd .and I found it a bit of a lottery when I kept ringing .some would be helpful some just want you off the phone .you will get there 
  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    Thanks for the reply @littleruthie123 , maybe I will try calling them again when I have the courage.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • littleruthie123littleruthie123 Member Posts: 490 Pioneering
    Good luck I no it's hard 
  • tina_123tina_123 Member Posts: 27 Connected
    Good luck, feel for you and what you're being put through by these people.
  • MisscleoMisscleo Member Posts: 646 Pioneering
    Is your mp of any use?
    Have you tried cab?
    Is there a councillor who could speak for you and get the message over that you cant leave your home
  • [Deleted User][Deleted User] Posts: 142 Listener
    Ah honey, I know how you feel. I last had a text from them on the 2nd July saying they’d got my forms and had no contact since. Panicking about silly likes ‘what if they’ve sent me a assessment letter and I’ve not got it?’ Which I know is highly unlikely but my anxiety makes me worry about all the small things. 
    I used a charity to help me fill out the forms and they did say I would know within 6 weeks if I’d have to have a f2f assessment- well that’s been and gone, hoping and praying I just get a award letter fall through my letterbox. 
    I’m having to change over from DLA - and it’s rubbish as mine (as were many!) a indefinite claim. My illness is chronic, there is no cure and will eventually kill me ..... well maybe then at least i’ll Have no worry and not feel like such a burden having to rely on the government for support :( xx
  • YadnadYadnad Posts: 2,856 Member
    niknoo said:

    I’m having to change over from DLA - and it’s rubbish as mine (as were many!) a indefinite claim. My illness is chronic, there is no cure and will eventually kill me ....
    I moved from DLA to PIP and have had 3 face to face assessments since and like you many of my issues are chronic and life limiting.
    I have had to fight every PIP decision and at 70 I had enough. I thought to myself which was likely to kill me off the quickest. The PIP system definitely. So for the sake of my health I had my PIP case closed down earlier this year.
  • MisscleoMisscleo Member Posts: 646 Pioneering
    Isnt that dissgusting that at your age your having to fight tjis low scum.
    I also have conditions that will never get better and i had my dla for life which was stopped because of my age not how ill i am
  • [Deleted User][Deleted User] Posts: 142 Listener
    It’s ridiculous! Makes you feel like scum having to prove how ill you are just to be able to survive. I wish they’d offer us all cures so we could work and live with fantastic health. I’d take that option anyway!!! 
  • [Deleted User][Deleted User] Posts: 142 Listener
    @Topkitten there may just be lots of backlogs at this time of years due to summer hols? xx
  • [Deleted User][Deleted User] Posts: 142 Listener
    It’s ridiculous! Makes you feel like scum having to prove how ill you are just to be able to survive. I wish they’d offer us all cures so we could work and live with fantastic health. I’d take that option anyway!!! 
  • susan48susan48 Member Posts: 2,229 Disability Gamechanger
  • YadnadYadnad Posts: 2,856 Member
    niknoo said:
    Makes you feel like scum having to prove how ill you are just to be able to survive.
    I don't suppose that it is the same as it was in years gone by. The staff of the DHSS/JC used to consider the claimants as scum now they are told to see them as 'customers'.

    My memory goes back even further when before the DHSS it was the National Assistance Board. Seeing how that operated was an experience in itself!

  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    I have heard many stories about how good our health system is and how we always throw money at people who don't deserve it. Of course, all the people saying such things are healthy and working. It's a shame that the people who need help the most never say such things.

    I thank everyone for their replies.

    I spoke to a doctor today first on the phone and then in person. He came convinced that the sweating and shaking were caused by a chest infection. After he found no evidence of one he was quite sad and talkative, which was a nice change. Seems I was right that it's caused by insufficient medication or because I exhaust the patches faster than I'm supposed to be able to. It isn't just my condition that is unique it seems. How I move forward knowing that it is going to become an every day thing is problematic because I cannot cope without strong medication and the doctors seem adamant about enforcing a guideline rather than finding out if it's correct or not.

    Since I had problems before with NSAID's I have been avoiding them but the doctor wanted to do something to help. They won't make much, if any, difference but at least he left on my side and maybe that's better for the future. I suppose I am going to have to get used to not moving about. I have little confidence in Social Care or Mental Health who are evidently supposed to be helping me but won't say when, to me at least. I suppose I was hoping that if I could move soon enough I would be able to get to and from the car by scooter and maybe get out a little but that looks less and less likely. I guess I somehow need to come to terms with losing what little ability in walking I had left......

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
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