SEATING ISSUES

Ok here I am, as always, in my wheel chair. It's OK , but off the shelf and not designed for my body shape... But that apart, I am grateful that at least it has a tilt feature, so my position can be changed. This is really important as if I were to stay in one position I would be in danger of getting pressure sores.... NoT GOOD.

BUT, It would be so much nicer if I could also have a chair to sit in. My rise and recline chair is due to be delivered in Jan... AFTER A 7 MONTH WAIT!!!!!

So last evening I got totally pissed off with this situation. I emailed every MP I could think of who might be involved.
Today I got a call from Craig Whittakers office , asking me for details.

I explained that heath care is exemplary BUT that the support services are not up to speed. Thy need to understand that MND is a speedy , progressive disease. That we, with MND are a minority... only 5000 in the UK. BUT there is no understanding of our needs except by heath professionals who seem to be as frustrated as I am.

OK, the chair wont be delivered faster than Jan, (The producers were always up front on their 8-10 week production time), but the delay with social care  sorting out their committees before the order could be placed,  is not acceptable.

AND

Their tardiness, has impacted on not only the chair but the toilet.

There may well be a Riser suitable to get me off the toilet... its in Central Stores, but I have had to wait two weeks for there to be two people available to deliver and hopefully fit it!

Imagine , you are unbalanced on your legs, weak, and have to transfer to a seat on a seat that doesn't fit!! You could fall at any time!  It's horrid. I fear going to the loo !

So , back to chair issue, I got a call from M.P. Craig W office today. I was given time to explain the issues... for me to state, primarily, that MND is a fast progressive disease.. especially if you have ALS.. which is speedily degenerative.. (Thats what I have) .I stated that I thought that we are a minority, and need to be shown special understanding. Waiting can mean that your body has become less strong and adaptations no longer aare ppropriate.

NB all this equipment is lent, it will go back for someone else... so its not wasted.. it will be used again... but it needs to be available!!!!!

The result seems to be that CW will talk to the appropriate people at Calderdale Council.


Watch this space.   AND


HUG ME, I'VE GOT MND