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Hello All
Hi
I’ve been popping into the forum and reading bits and bobs here and there. Thought I’d join in! I’m 46 and have Distal Muscular Dystrophy. There doesn’t seem to be a lot of information about this condition, it seems rarer than the other ones. I’m currently seeing the consultants in Newcastle/liverpool for genetic tests. My condition does not have the usual dysferlin (sp) problem although my CK levels are always around the 4000 mark. I get out of breath after walking short distances, to the point where I have to stop as I can’t get very far. A muscle biopsy showed ‘necrotising myopathy’ which was later changed to Distal MD, but this diagnosis is a ‘loose’ one as they are still investigating genetically in Newcasle. I’m certainly not in a wheelchair so it’s not all doom and gloom.
I was wondering if anyone could answer a benefit question for me after the newly announced cuts/reviews. I receive IB and DLA at the higher rates for an indefinite period. Am I likely to be assessed by these people? The forms were an absolute nightmare to fill in first time and had to be done by the CAB. My claim was successful but I guess that was because they contacted my consultant directly in the neurology centre who informed them of my progressive disease. I’m not workshy, I worked from teaboy up to manager in my last job over seven years but had to leave due to not being able to do the job anymore. It involved lifting boxes which I simply could not do, and we weren’t allowed to sit down as it was retail.
If anyone has any ideas about how people with indefinite awards will be affected, I’m sure we’d all like to know.
Thanks
John
Re: Hello AllHi John, welcome to the forum.
As far as I’m aware everyone on DLA will be reassessed from 2013. I don’t know about IB because I receive IS. I’m sure others on the forum will know.
Re: Hello AllHello John
Great to meet a new poster, and one with an unknown type too, doubly unique
@launton wrote:
I was wondering if anyone could answer a benefit question for me after the newly announced cuts/reviews. I receive IB and DLA at the higher rates for an indefinite period. Am I likely to be assessed by these people?
As specific details of the reviews and implementations have not been released yet, I do not know who, when or whether we will come under review, especially as we have these benefits with a clinically diagnosed and defined conditions. As Incap covers everything from people with a broken finger to full on quadrapeia there is massive scope.
If anyone discovers anything I am sure it will be posted on the forum or the main site.
I'm always the animal, my body's the cage
I blog about nothingness www.amgroves.com
Re: Hello AllJohn,
I agree with you about the forms
. I would advise anyone who is applying to seek help from somewhere like CAB with filling in the form. In my area there is a new service run in connection with the borough council that does home visits and can help with that sort of stuff too.Best wishes and welcome,
Sarah
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams
Re: Hello AllThanks for the replies everyone. I’ll try and be more prevalent on the forums
I also have some good news. My friend is currently chatting to the North West MD.Org regional staff about arranging and fund raising walk (as opposed to run, his knees are shot) The North West doesn’t have anything like this presently and it’s looking very promising. There should be some meetings in the next few months so we can raise some cash for md.org
I’ll keep you posted (in a new thread probably)
Re: Hello AllHello launton.
Migration from IB to ESA dates can be viewed here – http://www.benefitsandwork.co.uk/news/members-only-news/1164-forced-move-to-esa-your-transfer-date-revealedDates are not set in stone i think, it will depend on how well Atos and the DWP cope with the almost certain administrative nightmare that will ensue!
Although one might be exempt from further medicals with their IB claim, that does not apply once in receipt of ESA. The WCA due to commence in Feb 2011 will be slightly tougher than the one currently conducted.
http://www.benefitsandwork.co.uk/news/members-only-news/1207-even-harsher-new-esa-medical-approvedWe will all have to wait and see how things transpire….
Ranald
Re: Hello AllThe New Report said that all people on IB would be re-assessed in the early part of next year and given these new more stringent tests. I paused the TV on the letter the lady was holding. It said “Your benefit is changing, you will now be switched over to E.S.A.”. As we have heard this is continually re-assessed. The feedback is that you are simply judged if you can perform certain functions like picking up a pound coin or raising your legs to a certain level like the lady on the report. They do not accept any input from you on your problems or difficulty. If you can do a certain level of these functions you are “Fit for Work” and benefit cut to Jobseekers level. Suddenly I am so glad my deterioration is such that I cannot pick up a pound coin. This is all wrong people should not be put under such pressure. What about the conditions that are borderline or like ours where there are good days / bad days.
The joke going around is about the quadrelplegic who is told. “There is nothing wrong with you tongue, you could lick envelopes” Fit For Work”"Even if you are not paranoid, it does not mean they are not out to get you!".
Re: Hello AllHi,
Ranald’s information above looks absloutely “spot on” on this worrying subject. When I click on the Migration IB to ESA link it asks for a password. Is this information available elsewhere please ?
"Even if you are not paranoid, it does not mean they are not out to get you!".
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