I am 39 and have CMT type 1a. Last May I had a medical to move from Income Support to ESA. I was put in the work related activity group with a score of 17. I didn't receive this decision until the end of October.
On November 12th I received another medical questionnaire, so I rang to query this, explaining CMT was degenerative etc, was told I was under 3 monthly review and as it was overdue (due to their tardiness in sending decision) I had to return it.
I went for a medical on 2nd January, only to be told there wasn't a doctor available because my form wasn't read correctly,the standard medical couldn't take place as they are done by "healthcare professionals" who don't know about neurological conditions and would be re-arranged, (the EXACT thing happened last year, the medical in May was my 3rd appointment due to their incompetency)
Today I have received a phone call stating the new decision was being sent today and as I received ZERO points I'm deemed fit for work.
The lady assured me if I appeal that my benefit won't decrease whilst appeal ongoing, which is unlikely (I worked on DLA for 14 years before I was dismissed on grounds of ill health, so I know that normally, benefit would stop.)
I'm also trying to get my Civil Service pension paid early which would help me financially, but I'm not too optimistic.
As well as CMT, I have Arthritis, Sleep Apnoea, Restless Leg Syndrome and Depression, so I'm not exactly a viable option for a prospective employer. I now walk with a 3 wheeled walking frame too as my balance is poor.
I'm at the end of my tether, I am going to appeal obviously, it would be nice to know if anyone has any positive experience of ESA as it seems to be an extremely unfair process.
It is staggering that in less than 12 months I have been subjected to two medicals with unbelievably different outcomes.