07/10/2011 by Admin Kirsty.

Don’t forget to go and visit www.eczema.org from time to time - we are currently taking names for free samples of an emollient - Lipikar Baume AP and for our newly revised booklet on Contact Dermatitis.And remember to tell any family and friends that are living with eczema too!:~)

Posted in What's happening at the National Eczema Society | 1 Comment »

05/10/2011 by Admin Kirsty.

This blog entry marks the end of a fight with the Department for Work
and Pensions, nee Benefits Agency. I wish I could say the war was done,
but still we fight the DWP regarding our daughter’s care needs.

Last year, on-top of my IBS and ME/CFS, I developed a rather nasty case
of pompholyx - “hand eczema”. I didn’t know it was eczema at the time -
a small cut got infected, and my hands started blistering. This prevents
me from cooking or washing, and can sometimes make walking even harder
(I also get it on my feet). It doesn’t go away; I’ve had only around two
periods of less than a week where I had no blistering or weeping in the
last year. This put even more strain on my gorgeous partner and carer,
Twitter’s @dombed. We were filing a claim for DLA for our daughter
(whole other story!) when we noticed that I also qualify. So I applied
in September 2010 believing I should receive the Lower Rate Care component.

Having read other peoples’ experiences and advice on the internet, I
didn’t expect it to go smoothly, and sure-enough, it didn’t. At this
time I was still undiagnosed, and my GP believed it to be contact
dermatitis. He also wasn’t fully aware of the severity, as I’d been
attending the Nurse Practitioner owing to her increased accessibility,
so his report wasn’t particularly supportive. I, of course, requested a
reconsideration and the DWP duly dispatched an ATOS Origin Dr to my
house to investigate my claim. He came along, was quite pleasant &
thorough, did his report and left. I didn’t think there was any way that
the reconsideration could go anything but my way after he’d seen my hands.

But again, things didn’t go smoothly. The DWP simply ignored chunks of
his report. He said my hands suffered “substantial impairment” in the
report, but the DWP decision stated I suffered “slight impairment”. He
said I can’t cook. The DWP said I can. I got confirmation of a pompholyx
diagnosis, but the DWP didn’t care. Off to tribunal went the case, then.
This was when the DWP decided now would be a good time to make life that
bit more stressful, and perform a migration on my claim from Incapacity
Benefit to Employment & Support Allowance (ESA). Great timing, DWP!
They didn’t even make this simple; scheduling problems resulting in ATOS
making threats of benefit cuts while the DWP tried to help find a
workaround for us.

My ESA Work Capability Assessment went well. The GP seemed to understand
my problems, and it went pretty smoothly for me.

Not-so-smoothly for the poor elderly lady sat in an empty waiting-room,
while the staff were on lunch, having been sat there for 3hrs after
being told to wait.

I hate waiting, so phoned the DWP to get the result of my ESA migration.
I was told that I’d been placed in the Support Group, which I think made
the call-handler confused when I then asked for a copy of the ATOS
report. I planned on submitting it to the DLA tribunal.

Wednesday came, and off to Norwich we went for my Tribunal hearing.

Clerks were great - friendly and informative. The actual tribunal didn’t
seem to go very well.

It was held in an office-room, with a table separating the two chairs
for the appelant from the three chairs of the Tribunal members. It was
much closer quarters than I had expected. A male consultant surgeon to
my left provided the medical advice; he was pleasant, understanding and
helped cut through some confusion from the Chair. To the right was a
Disabilities Advisor, who was there to provide life-impact advise to the
Chair. She was also pleasant, but very quiet. She hardly said anything.
The Chair herself was quite stand-offish and slightly intimidating. I
felt like I was probably wasting her time.

The surgeon asked questions, then the advisor did, followed by the Chair
who then said they’d decide that day and write with the decision.

I really hate waiting. When you’re sick and/or disabled, you often have
a lot of time on your hands with little or nothing that you can do.
This makes you think about things more than you would otherwise. Being
told to wait for the post is like being sentenced to up to a week of
stressing.

So Friday morning I rung the Tribunal Service, hoping they’d tell me
what the result was. Turns out they’re not allowed, so I tried the DWP.
A nice lady at their call-centre said that the system only stated
“appeal allowed” and didn’t know what that meant. She said they’d sent
me a form, but would ask me the questions and send an email to the
department to hurry things up. She then asked if my bank details were
correct, and if I’d been in hospital overnight since the appeal.
The post came - a brown DWP-ish envelope, creating hope that it was the
decision. It wasn’t. It was that ESA ATOS report. Only two days too late
to be useful.

Did I mention I very much hate waiting? Friday afternoon I tried again,
figuring they may have updated their systems. I was right - another nice
DWP call handler explained that I had won my appeal and was being
granted a 3yr award of Lower Rate Care, starting last year!

Irony upon ironies, while sorting the notes for this on Saturday, the
postman came. With a Tribunals decision notice. Did you know that the
Tribunal Service has no enforcement power..? Meaning the DWP can just
ignore them if they really wanted?

So this case, which really wasn’t that complicated because it only takes
one look at my hands to realise the difficulties I face, took over a
year to come to it’s conclusion, and only did so correctly because my
partner and I were willing to fight. I’ve no idea how much extra money
this all cost, the lawyers, the decision makers, the Tribunal staff, but
it shouldn’t have cost it. I do know how much stress it’s caused to
myself, my partner, our family, but it shouldn’t really have cost it
either.

But this fight is done. For now.

Craig.

(Originally posted at Nottingham Eczema Support:
http://www.nottinghameczema.org.uk/blogs/Thingamablog/archives/posts-from-craig/index.html
)

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08/04/2011 by Admin Kirsty.

April will see the launch of a new e-newsletter available to subscribers online.  It will be a short, punchy email with topical up to date information about eczema and about what we’re currently up to at the National Eczema Society.To sign up for the first issue just visit www.eczema.org and follow the link from the home page.  We anticipate on issuing a newsletter every other month so we won’t bombard you with junk and there will be an option to unsubscribe in every issue, so there’s nothing to lose by trying it out really!

Posted in What's happening at the National Eczema Society | 1 Comment »

19/03/2011 by Admin Kirsty.

Friday 11th -13th March saw a variety of NES staff and a volunteer manning a stand at the above event.  Unfortunately, the event itself was a little quiet on the Friday (and it was cold!) but understandably busier over the weekend.   As expected, it is true that if we go to “family events” the precedence of eczema is such that we will find people with eczema and indeed we did!  We gave out loads of free information and advice about Living with Eczema to adults and children alike.  It was good to meet people there.  We’ll be out and about at other Events throughout the year.  Keep watching the website and if we’re in your area at any point we really would love to see you there.

Posted in What's happening at the National Eczema Society | 1 Comment »