Wednesday, 4 April 2012

April 4 - Update 5

Over 200 people worldwide have filled in my GBS/CIDP Survey so far - Thanks to you all - I am hoping to get to 1,000, then I'll be really satisfied.

I have just had a letter containing a sentence from the DVLA - They have stated I am fit to drive, 8 months, 1 sentence, 0 examinations :-).  Oh well at least I have been passed fit.

The DWP are proving a even worse!  All I was after was assistance in getting my car changed so I could continue to drive (and hopefully keep my job!) and it would be nice to give my mother-in-law something for the days she comes in and looks after me.

They state they do not have enough medical information, despite doctors letters and numerous others, plus me volunteering to be examined either personally or over the phone.  So I asked to talk to a medical examiner and nearly 3 weeks later - no sign of them (as my paperwork seems to be stuck in their system), but the excuses I have been given are gems:

"There are over 3,000 people in this building!"

"We can't just go and get them!"

"You can't speak to a medical person you have to speak to a decision maker"

I have given up and written to my MP in desperation to see if they can get anywhere - but it seems to me that they are just trying to outlast me!

I have had my car replaced, as I could wait no longer, with one that is automatic and has adaptive cruise control (which means I set the speed and the car adjusts automatically according to traffic speeds).  Being a Volvo the normal setting put you so far behind the car in front, you are in the previous Post Code, so I set it to minimal, but it does mean I can rest my legs completely for long sections of driving, which makes a massive difference.

I am going on holiday next week to Jersey (Channel Island), it is a place we know well, honeymooned there 27 years ago! My aim is to walk along the causeway to the Corbiere lighthouse (and back!). This will require assistance, involve a long rest at the far end and the rest of the day to recover. If I make it, I will post a photo with my next update.

To mis-quote a famous saying:

"Don't let the illness grind you down!"

1 comment:

  1. May I make a suggestion? Does your MP have a public access e-Mail address. If so write a pro forma letter/e-Mail to your MP, post it on the Facebook forums and get people to send it in. Then it doesn't become a matter of outlasting, but out pestering. Make it more of a problem for them to ignore you than help you.