Announcement

Collapse
No announcement yet.

Ds1500

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Patw
    replied
    matthew55 Hopefully they can help 👍

    Leave a comment:


  • matthew55
    replied
    The hospice should be the first resort. My ex gp was excellent and very clued up but even he deferred to the hospice plaintive care team.

    Leave a comment:


  • Patw
    replied
    LindaB thanks and I will 👍

    Leave a comment:


  • LindaB
    replied
    Patw the good news is PIP will be back dated from when you applied....

    I've found my local hospice community team a great source of support...social worker...OT....SALT...Specialist nurse.....really great! Keep us posted 👍🏻

    Leave a comment:


  • Patw
    replied
    LindaB thanks and I think that’s the last resort

    Leave a comment:


  • LindaB
    replied
    Patw as others have said try your local hospice team...sorry you're being given such a hard time....last thing you need is more stress

    Leave a comment:


  • Patw
    replied
    LindaB tried my gp there just as bad, the gp said we only give out to cancer patients or people with neurological conditions my partner stated I had bulbar mnd , she said ok I will have to ask your neurologist !! Even my gp hasn’t got a clue about mnd !! Had enough now am at breaking point!!
    really feel like robbing a bank

    Leave a comment:


  • Patw
    replied
    Ellie shocking isn’t it !thanks again

    Leave a comment:


  • LindaB
    replied
    Originally posted by Patw View Post
    Sick to death of fighting for anything and everything, diagnosed March this year. slurred speach started March 2020 so 18 months since symptoms started , still no benefits no pip decision sent all paperwork at least 8 weeks ago ,,and it’s bulbar onset supposedly quicker progression!! So after asking my mp to get involved I get this letter from my heartless neurologist remember I have 4 children 3 under ten I’m sick of it
    My GP completed my DS1500 so try that route?

    Sorry you've had such a poor experience with this person who should really know better😠

    I agree with other posts MNDA will help if you contact.

    Good luck and don't give up👍🏻

    Leave a comment:


  • Ellie
    replied
    Absolutely outrageous, heartless and shameful for her to point blankly refuse you the DS1500 and to ignore the 'Scrap 6 months' campaign outcome.

    Now we know what the FA initials stand for, the A being Awful.

    Contact MND Connect if the hospice can't help you Patrick, she cannot wield such power over you. xx

    Leave a comment:


  • Patw
    replied
    Mary C yes had a call from St. Peter’s today so we see what that brings ,, it’s just let down after let down, I got mortgage 3 young boys who won’t stop eating, so stressful and to cope with mnd aswell I wish I was taken away soon

    Leave a comment:


  • Mary C
    replied
    Hi , this is awful for you.Are there any other health professionals involved who could issue a DS1500( community palliative care nurse or a hospice nurse or GP.)
    There seems to be several hospices in the Bristol area…if you haven’t been referred it might be worth ringing nearest hospice and seeing if you can self refer and explain with a young family you are are in need of support ?

    Can MND Association take this on with/ for you in terms of chasing up PIP and any other benefit entitlement .Might be worth ringing and asking.The MND association also has volunteers..could a volunteer help with these issues.

    Don’t give up.You need a good team around you and hopefully SALT team are already involved.

    Best wishes
    Mary


    Leave a comment:


  • Patw
    replied
    Sick to death of fighting for anything and everything, diagnosed March this year. slurred speach started March 2020 so 18 months since symptoms started , still no benefits no pip decision sent all paperwork at least 8 weeks ago ,,and it’s bulbar onset supposedly quicker progression!! So after asking my mp to get involved I get this letter from my heartless neurologist remember I have 4 children 3 under ten I’m sick of it
    You do not have permission to view this gallery.
    This gallery has 1 photos.

    Leave a comment:


  • matthew55
    replied
    I considered ending everything at diagnosis but then I thought it would be a good thing to live part of my life on the other side.As a cripple in a land of walking people. Appreciate both sides of an argument as it were. 😁🤗😘😍xx

    Leave a comment:


  • Ellie
    replied
    Thanks for your good news post MMG

    Lovely to hear that Dean is so well linked into various services. xx

    Leave a comment:

Working...
X