Its not just the governments though who have no idea about people with MS or disability. Sorry it really isnt.
I was contacted by the physio department they came and did an assessment and decided i should do all these exercises, and go swimming. she even said they would arrange for me to go. I never saw or heard from her again, the exercises i was to do myself and quite frankly i had no chance of doing. Then suddenly I got a phone call from some young women who said i see from your physio assessment you have balance issues. I would like you to attend a balance class. Ok i said how do i get there?
Oh we can pick you up at 9am and then when its all finished drop you off. REALLY. I mean i have PPMS and you think i can be up and ready to go to a balance class, be dragged around the county in a bumpy old bus collecting other bodily souls to be tortured then be dropped back off later so my morning will have been practically 30 minutes balance class and 3 hours travel to go 3 miles…
Hardly. I mean i tried to explain to her i have PPMS it takes me ages to get myself going in the morning at 9am i am still trying to eat breakfast.
She finally landed in my sitting room last week as this women was DETERMINED to get to me a balance class.
She wanted to do a balance assessment with me. My daughter and her partner were here so they waited in the kitchen.
Out came a flip folder with a form and a pencil to be ticked off, i think she called it BUG, i have no idea what it meant.
First thing was to get up off my recliner achallenge i face everyday. I use a rollator, and i have my own way of doing it which suits me.
So i started to do it MY WAY, it was wrong, so she forced me to do it HER WAY, i couldn’t get up for love or money. I have very weak left side. I was nearly in tears as she was pushing me to do it. (This actually resulted me in having a back pain for 3 days).
I sat back on my recliner and she decided to say to me YOU ARE NO WHERE NEAR WELL ENOUGH to do this. I said to her quite loudly well yes i have been telling you that for weeks…(daughter and partner in kitchen listening and giggling) she had no idea how PPMS effected me or how disabled it made me combined with the grief of loosing my husband. I was just a BOX that had to be ticked. She didn’t even know there were different types of MS.
Basically she was trained to do a job wore blinkers. Everyone over 60 needs to learn to balance to keep themselves on their feet blah blah, and even if they are disabled they can do it, no they blooming well cant. She really had no clue. So was referring me back to physio as she was lost.
The other one was a specialist i had to see from my pain clinic appointment she had a special name cant remember now its to do with working with your mind and healing your body, blah blah…i went to see her i am game to try anything. It takes about 40 minutes to get to her office as she is city based.
I got there we went through all kinds of heavy stuff i was with my carer and she said wow that lot gave me a headache.
The verdict was i should join a MINDFULNESS CLASS.
Now i told her clearly (i had my hubby then), i get wiped out from lunch time, and I am sure a lot of MSERS are just like me.
I finally get an appointment for a MINDFULNESS CLASS in the city at 2pm for 2 hours. Now your having a laugh.
She never bothered to listen to me. They have no clue.
I spoke to my MS nurse and told him and he said all the main things are in the afternoon, and i said yeh and if you have MS its no wonder a lot of us dont go to them, he agreed but said well thats how it is sadly.
I have not come across ONE person not even my neurologist who truly understand just how MS impacts our lives. EVERYONE of us is different. PIP assessors work just like that physio lady who saw me with a set question sheet. They look at us and see NOTHING just a number on a board.
Ask the questions blah blah blah. Whoever writes them they use physios and specialist to make these forms. It comes from them not a civil servant in an office. Some of the assessors are TRAINED nurses etc.
Now as much as i get fed up of politicians etc, i have to say I had my PIP assessment and i was BETTER OFF then my DLA. I also was very lucky to have had the support of my neurologist and my GP who FINALLY UNDERSTOOD what my MS had done to me PERSONALLY. They both sent in a supporting letter.
Until the professionals who work with us get us, we have no chance. Sorry to say this but even the MS society dont really understand fully how it impacts on us. I had them visit me as i want to start a coffee morning near me as there is nothing for several miles and all the entertainment is at night. Useless for a lot of people with MS AND they didnt understand PPMS.
I think the issues too with MS is we are all lumped into an umbrella of MSERS but we are not the same.
RRMS effects our bodies differently then someone with PPMS and so forth and so on. You have to segregate them as we are not the same.
So although i think the PIP assessment is written by ignorance its not necessarily by the governments of this land as they rely on the professionals to advice them, it comes from the very people who are supposed to understand us who have disability and they obviously dont.
My friend who has MS had an OT assessment in his flat for a wheelchair. She took no notice of his surroundings or listened to him at all. They sent him in a massive electric standard wheelchair … errrrrr it wouldnt even go through the sitting room door…NUFF SAID lol.