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    I was front page news

    I think the CHC lies were the final straw for me. Such a blatant misrepresentation of facts. My social prescriber has been trying to contact them about it as she was at the assessment and is horrified. I need them to know this is not acceptable

    https://www.northamptonchron.co.uk/h...atment-3759086
    Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

    Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

    Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

    #2
    Well done you. Perhaps we all need to do the same.
    😘
    when i can think of something profound i will update this.

    Comment


      #3
      denise I think so. I am fed up of being invisible. Imagine a terminal cancer patient being ignored or told we have no Macmillan or Marie Curie nurses. There would be uproar!
      Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

      Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

      Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

      Comment


        #4
        Well done TL!

        Doug
        Diagnosed April 2017

        Comment


          #5
          TinyLady That's really brilliant ( not the situation but the article !) . So well worded and the exposure I am certain will kick start something or someone to now act. It has to. So proud of u for having the confidence to speak out and make people take notice on a subject which isn't common knowledge to general public. Huge well done. Xx

          Comment


            #6
            Well done. I hope it has the desired outcome and you get the support you need asap.

            Comment


              #7
              TinyLady Go you! well done, a voice for all of us. You should be so proud as we are of you xxx
              Carer for my husband who was diagnosed with ALS on 15.12.21.
              Trying to think of only today and tomorrow
              Alison β™₯

              Comment


                #8
                TinyLady Good on you TL... and on the Northampton Chronicle for reporting on the situation. Here's hoping that the article will do some good. Hopefully the paper might re-visit the topic at some point to see if your appeal is successful?... and perhaps the story will be picked up by wider regional, even national news?

                Frustrated by the NHS clinical director's response - of course she can't publicly comment on your case but did she think that blahdy blah was going to convince anyone?

                Not just you but your whole family is suffering unnecessarily. Keep going, Tiny Lady, don't give up... but remember to have time off from the fight and spend it with your hubby and daughters. All the best. xx
                Husband died 14 months after MND diagnosis.

                Comment


                  #9
                  Thank you for all your support. It was my lovely cleaner that just phoned them as she was sick of watching me struggle and not know where to get help.

                  The reporter was great and we agreed he would return and do several more stories. So I am determined to get our message out there.

                  I was high as a kite on morphine and with my very poor slurred speech (plus scribbles) I'm surprised he understood a word 🀣🀣🀣

                  CHC have still not even phoned me (via my social prescriber) back to even discuss the report.
                  Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

                  Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

                  Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

                  Comment


                    #10
                    found this online. the percentages for applications which are successful is shocking.

                    https://justcaringlegal.co.uk/conver...ing-to-region/

                    Comment


                      #11
                      TinyLady I am so so proud of you. The write up is just bang on. I also emailed my local paper but no response yet.

                      Great and thorough reporting. Also from the association also.

                      I'm beaming like a Cheshire cat 😸 x
                      Diagnosed May 2021 bulbar onset als.

                      Comment


                        #12
                        Well done πŸ‘
                        Foxes Never Quit πŸ’™

                        Comment


                          #13
                          TinyLady Go girl, don't let the baskets win - it was awful that you were forced to go to the papers in the first place and I hope you get the outcome you want, need & deserve. πŸ˜˜πŸ˜˜πŸ€—πŸ€—
                          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                          ​

                          Comment


                            #14
                            Zante - those statistics are scary!

                            I've said all along, if the report had even been vaguely accurate then I would be forced to follow the appeal process.

                            But the total falsification and omissions of all evidence provided at assessment of health needs shows they have no integrity whatsoever. That isn't just being extra selective and tough with the criteria, that is corrupt. I have no need to appeal, they need to be explaining themselves.
                            Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

                            Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

                            Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

                            Comment


                              #15
                              Ellie - not sure what the outcome will be. But i have been stuck in bed, in pain all day and it isn't necessary. A bit of a proactive support and the few issues I have going on could be resolved. All I want is regular easy access to an MND nurse, face to face, who can get to know me and make sure my health needs are met.
                              I also want the CHC to pay for being liars and corrupt and learn that vulnerable people deserve fair treatment.

                              Doesn't seem so much....
                              Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

                              Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

                              Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

                              Comment

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