A shared experience - Thank you.

Though this was posted as a comment on the previous post. I didn't want it to be hidden so have copied it here for easy of access. Thank you to the sender.

"Hi there,

very interested to find your blog as I have just spent the whole day surfing for info re the same situation for my partner.
He has been positive for 22 years, was awarded DLA for life when he was severely ill in '97 with AIDS. He was lucky at the time, he was one of the first group of patients put on a combination therapy trial and survived.
He subsequently suffered from Non-Hodgkin's Lymphoma where there is a 40/60 chance of survival and survived, after 6 months of chemo.
He also suffered from KS.

He is now treatment exhausted, on efivarenz with all its lovely side-effects, mood swings, depression, occasional hallucinations etc. and Fuzeon's T20 which has quite literally saved his life a 3rd time.

He suffered chronic muscle wastage whilst on chemo for NHL and is not really able to work.
He was a top flight hair stylist for a west end salon by trade.
Got "made redundant" by his employer whilst recovering from cancer.
There are doubtless many law suits there but hey!
He suffers from lipidostrophy, neuropathy, muscle pain and is unable to stand or sit for any great length of time.
Additionally, he simply doesn't have the physical energy to lead the average person's life.
He cannot concentrate on a book for more than 3 chapters so how he would access further learning to retrain is a mystery.
He certainly cannot cope with going back to a full time career as a hairdresser.
He can't feel the ends of his fingers properly and so cannot hold a pair of scissors to cut....
He's not exactly academic, physical labour is out, so one wonders what he could actually do to earn a living if his DLA is withdrawn.

We have recently had the joy of the DWP letter which has sent him into a panic.
I too subscribe to the "no news = good news" idea but am concerned.
I've just been made redundant 4 days ago so supporting us both from 1 salary is going to be impossible.

His consultant at St Thomas' has been very helpful. He's made us aware that he's been inundated with requests for medical information from DWP. Seemingly everyone with a blue badge is under scrutiny.
Now, as my partner was given 3 months to live at the time of his life-time award, it could be argued that his circumstances have improved, if you are to interpret the letter of the law literally.

We have been told to be quite methodical in the letter we are going to send to his consultant and other physicians attending.
Essentially, one needs to provide a complete medical history charting all/any diagnostic sequences. Treatment history and any side effects need to be included, effects on one's ability to live "a normal life" need to be explained including mobility & mental health.
Finally, some allusion to prognosis has to be made.
In reality, my partner will be lucky to survive another decade, it's unlikely he'll make it to the DLA cut off age-65, so one hopes some bored official in a badly decorated office in Blackpool isn't rushing home to watch the X factor and is bothered!

Anyone out there who has had a DLA review for a life-time award and has received their results, please post.

I am going to be contacting what's left of the gay press to see if anyone is prepared to at least commission an article on this issue as it affects quite a large proportion of the older community."