Confused - Again!

I was diagnosed 1986 with a terminal illness but managed to survive without intervention..only monitoring..until first major medical problem requiring hospitalisation for 4 weeks in about 1995/6. (Unknown to myself, parents were told...'take him home..we suspect he won't last more than about 6 months, theres nothing more we can do!) Parents encouraged me to move back up north from London and a friend got me into medical care with a brilliant local consultant who started me on the new antiviral treatments coming available. I applied for benefits which were awarded under 'DS1500 rules' and told sicknotes were no longer needed.

I currently recieve Income Support worked out as follows per week:-

For you......£65.45

Because you are sick or disabled..(Income Support Disabilty Premium)....£28.00

Because you are severely disabled ( Severe Disability Premium)....£53.65

Because of the Disability Income Guarantee (Enhanced Disability Premium)...£13.65

High Rate DLA ...Both for Mobility and Care/AA

Here's the confusion:- Apparently I am REGISTERED for Incapacity Benefit..but DON'T receive IB money

My terminal illness is now classed as 'a chronic manageable' disease...(but of course if I stopped taking medication..I WOULD sooner than later... Die!!...so to me am still terminal..oh the joys of semantics..lol)

In 2008, the DWP ordered a DLA review of all DS1500 survivors...who hadn't actual died!! They wrote that they had information of a possible 'change of circumstances' and I had to complete a DLA556 form. In the last section, 'any other information you wish to add', I pointed out that though my underlying condition was being managed..it was based on clinical indicators..from my consultant who sees me for 10 minutes every 3 months.. He sees no reference to the physical/mental scars of coping 24/7 with daily nausea, depression, anxiety, panic attacks, coping abilities under stress, occasional dizzy spells, sleep disruption, neuropathic pain, short and long term memory and concentration problems, high fatigue, body figure changes, caused by lipodystrophy/lipoatrophy (fat loss on buttocks ,legs, arms and face - fat gain around the waist causing weakness in limbs and uncomfortable sitting/resting/sleeping), intermittent uncontrolled bowel functions...all as a direct result of the long term infection (26 yrs and counting) or side effects of the medication.

In addition I have inoperable severe atherosclerosis/peripheral vascular disease.

In short...am disabled for LIFE..not just for Christmas!

With support letter from GP, Supported Housing Association Support Plan, Orthopeadic Consultants and Clinical Psychologists reports..my DLA was renewed without rate level change...from 'For Life Award' to 'Indefinite'

It appears... if I read the rules correctly..i'm exempt from PCA...but given earlier mention about being registered for IB but not receiving IB payment amounts..am quite confused over what to expect now with regard to maybe getting an IB50 form..needing a Med4 or ESA forms etc...Also, recently moved home ..old GP was amazingly supportive...especially during a recent period of severe anxiety/depression caused by anti-social behaviour and harrassment..but now have a new GP who hasn't reviewed my condition fully as yet. What should I discuss with new GP about him possibly recieving an IB113? Might that happen?

Am I missing something and worrying unduly at the moment? Hey, I'm old...but at least I made it this far...so many of my friends didn't! Sorry for length of post:-)

So far as I'm aware, the forms that are filled in are the same for IS on the basis of incapacity as they are for IB.

I think that it would be well worth briefing your new GP on your condition. What about giving him a written summary?

so much in your post its hard to answer.... a few points that stand out....and playing devils advocate

"My terminal illness is now classed as 'a chronic manageable' disease...(but of course if I stopped taking medication..I WOULD sooner than later... Die!!...so to me am still terminal..oh the joys of semantics..lol)"

That wont carry much weight with the DWP as they would say, many people who did not take drugs will die.. blood pressure diabetic and many more.

as for

"inoperable severe atherosclerosis/peripheral vascular disease."

it normaly is inoperable as its outside the heart but there are many drugs that control this problem and recent trials are showing very good results.this problem gets lots of press and much of it is positve these days


asfor not getting IB your list a lot of benefits and these might overlap so you get them and not IB

someone will be along to answer this


like any others in the future you will be reviewdand depending what else is wrong with youyou will be put in one of the three ESA groups, will you make support group ? depends what your other problems are