Soooo I know it's not ataxia for my mum but we understand eachothers conditions fairly well when comes to shakes, weakness dropsies, being unsteady and generally fighting daily to carry on as normal as we both can.
We applied for DLA for mum as over years her artheritus rheumatoid and osteoporosis has spread throughout most of her body which is horrible to watch her worsen to see even just moving causes so much pain =0( She now can't even lift a pan incase she pours boiling water down herself (nearly happened two days ago thankfully my brother flew across kitchen to save her from being injured)
What has saddened me is we received the letters sent from GP, and the medical exam taken for the DLA we were shocked at GPs responce 5 out of 10 questions were unswered UNKNOWN now my mom goes about twice a month for pain meds, updates and to reassess the pain patches. When we applied we explained daily stuff troubles, usuall difficulties. She was undergoing pain management, CBT, Physio and seeing a podiatrist who cannot treat her foot as too dangerous due to tendons), while also waiting for accupuncture and another appointment for pain management. On the Gps form NONE of the above were mentioned just CBT. When we eventually saw GP he said he had no information from outside sources within NHS on what had been said and any next steps in treatment was and that they had received no correspondance and asked if we had received anything, so we asked if they could request a more detailed upto date information for medical records for the system. We also requested to see what had been forwarded to DLA people from Dr's and they point blank told us they have no idea and that was down to a GP who has never even spoken to my mother in regards to her treatment or disabilities.
The Docter sat there and said that is Not down to the GPs that is down to us to tell the corresponding treatment centres to send them the information. We spent a further 3 days ringing pain management only to be told once we explained what GP told my mother, that tthe GP is the one who needs to request for more information to be forwarded to them. We also asked for the one of the CBT course leaders to call my mum back to rearrange a cancelled appointment due to bad weather. So far NOTHING.
After exausting all avenues to get upto date medical records for GP we rang PALS who told us to speak to practice manager about issues, he fobbed us off with nothing I can do it's down to you to chase up medical information for your GP. We are at an absalute standstill in regards to correct information, and many other issues Physio can no longer treat her as nothing they could do, she is too far advanced in artheritic deterioration for Pain management to treat her all they offered was CBT and nothing else was available, I suggested asking for OT in regards to helpful tools for her disability it how I got my cutlery, radio aids, wheelchair and thing to do buttons up. They refuse to refer her.. Minus tthe bipolar not being treated due to pain meds clashing and GP said she reported she had bipolar yet we gave them the diagnosing consultants name, hospital and Community mental healh nurse from 2006-2008 yet they have refused to refer her to nearest Psychiatric treatment centre despite it being rapid cycle. ARGHHHHHHHHHHHH!!!!!!!! I'm at a loss on how to help my mum everyones washing their hands of her when she says I need some information and support for DLA tribunal as she barely existing as it is and was hoping as stupid as it sounds to get her a scooter, some household aids for bath and things to give her some sense of independence.
We rang DIAL up and they refuse to put her on the books despite saying a week before 2nd refusal for DLA if had to go to tribunal they would help her. All we have left is CAB and that is next week we've basically been battling last 2 weeks to get information ready and for people tto forward stuff so everythings correct and no one will say yup we'll do that. Doubled with she only has 2 weeks to say yes to Tribunal. Man sorry for vent know it isn't ataxia but it's my mum and she cared for me and battled for my rights and now facing far worse than I ever did when comes to her disabilities.
Any advice out there from fellow Ataxans going through this would be appreciated, it's sad to watch my mum's face crumple in loss of what next and get told each different referrel there is nothing we can do, it's making me sad too I was considering asking for upto date medical tests for my Ataxia as we have same GP it's put the fear of god into me about even asking because seeing my mum go through hell over wanting hers corrected and updated has made me go man I can't do it twice over...
Thanks for reading my vent and sorry it's not ataxia related but Needed somewhere to vent