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    Postcode lottery

    Ever since I joined the forum, I have become increasingly shocked at the differences in care. After being diagnosed in January 2021 I had to pay privately to see a Neurologist, for a second opinion. But he transferred me to NHS.I told my physio who had been trying to help my foot drop and I within I few days I was connected to a whole team of healthcare specialists. I had a stair lift fitted within a few weeks. Wheelchair after a few days when I realised I couldn’t walk outside for more than a few minutes.Crutches for the house and now a walker.All team keep in touch. Phone calls and texting, visiting if needed.I am so shocked that it depends on where you live to get help.What is going on?? Don’t get me started on PIP!I could no longer work in our business and we had to sell up. Nearly seven months then a humiliating assessment on the phone . Rant over.

    #2
    I was introduced to the support team by the neurologist the day of my diagnosis and last week i got four visits and another tomorrow. Costing me a fortune in teabags.
    My MND is mainly arms and hands
    It's all funny

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      #3
      Lesley you’ve been very lucky for your wheelchair etc to arrive so quickly. Shame thanks you had to sell you business but good that you now had money in your bank as MND takes lots of £s x
      ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

      I'm staying positive and taking each day as it comes.

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        #4
        LesleyB Yes, it is the shocking reality. Glad you're one of the lucky ones xx
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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          #5
          LesleyB it's such a shame that it depends where you live as to the service and support received.
          Maybe we need to be reporting shortfalls more however the reality is we're probably too busy overcoming the next hurdle.
          I'm in a good area I think; although the wait for wheelchair assessment is looooong🤔😏🙄
          Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

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            #6
            My OT did the assessment for a wheelchair, then the wheelchair place rang me the next day. Plus they come to house with it. My neurologist is in a different town to me but my team are local. I also have a MND co ordinator who helped me with the PIP form. My weakness is my legs and back. But has progressed quickly since May.I find it hard to turn over in bed. It makes me laugh these Co vid rules. None of my visitors will have a drink not even a glass of water.Still have masks and gowns etc.

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              #7
              Lesley I'm guessing its a manual wheelchair? Albert waited a long time for his power chair and then could only have it after he had done the 30 minute "Road Test" to see his competence out in the street etc, all in all I think it was a year,

              they gave him a manual one to be getting on with every time he sat in it I thought it would collapse! never mind the fact I damaged my wrist pushing 18 stone and the chair...........not complaining just being realistic, Wakefield Council have been absolutely brilliant with the adaptations - we have paid for nothing apart from before they got involved...........I wont fault them YET!!

              Sue
              Husband Albert diagnosed PMA Feb 21

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