Sunday, September 11, 2011

A Tale of Two Claims.

This week 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's decision regarding our daughter's care needs.

Her tribunal is in the next week...

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, 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.

Wednesday, November 17, 2010

An Interesting Difference - Reactions to Illness

As you may be aware, I suffer from Chronic Fatigue Syndrome/ME and Irritable Bowel Syndrome. These are "invisible illnesses" - the symptoms aren't visible to you. I don't have a missing arm, I don't have lesions all over my face, and to look at me you'd probably think I'm just really hung-over.

I'd gotten used to people not seeing that I was ill, gotten used to the disbelief and outright rudeness from others, gotten used to having to explain my illnesses to people through either necessity, or in response to questions asked. It's a trust thing - if you can't see it, how do you know it's really there? There's that niggle (or with some people, a shout) in the back of the head that says "it may not be real, they might be after attention/benefits/whatever". I've seen it, heard it, dealt with it...

...that is until recently. Back in April a small cut in my right hand became infected. No biggy, see the doc, get some steroid cream and anti-biotics and that will clear right up, right? Wrong. The infection cleared up lovely - my skin did not. An itchy, horrendous, rash began to spread across the hand and up my fingers, at first sparing my fingertips. Then it started on my other hand, and also my feet. Now, when I say itchy, I'm not afraid to admit that I've suffered from a fungal infection or two in the past, I've fallen half-naked into a nettle-bush and once spent nearly 6months with my leg in plaster - I thought I knew what an extreme itch was. I knew nothing. This was an itch beyond all comprehension - an itch that literally made my hand numb for all sensation except for the itch. It blistered all over, it dried up, the skin cracked, then as it was starting to heal the blisters and itch would come back, starting it all over again.

As a result, my hands now often look like this despite being under consultant-dermatologist care, using antihistamines, steroid creams and gallons of moisturiser.

But something else showed up, something far more interesting - understanding, empathy, well-wishes, consideration. I'm not used to that, I'm used to being made to feel like I'm a shirker despite actually being really ill. People can see this. It frightens them. It makes them withdraw while inhaling sharply before saying "ow", or "that must really hurt". They empathise, considering how it must feel to have these hands. People open doors for me. People write for me (better than get blood and gunk on their pens I suppose)!

I've had to keep them covered for a while, can't touch things without the gloves, and they themselves cause their own set of reactions. Bear in mind that I generally wear dark colours - a black hat, black shirt and the only bit of colour on me is my blue jeans; but now I have bright white gloves completing my ensemble, a glaring contrast of white on black.

One little girl asked if I was a magician. I get constant references to Michael Jackson! A group of adults I overheard were saying "check him out in the hat and gloves!", "yeah, something SERIOUSLY wrong with him!". I had one 12yo girl snidely comment "ooo, nice gloves!", so I pulled it off, held up my hand and asked "is that better?". She literally screamed (not an exaggeration), backed off and pretty much begged me to put it on. Despite it reducing me to a figure of horror and revulsion, I must admit feeling a momentary victory over snotty-commentary with that and went off smiling.

So three reactions to three visibilities of illness. Invisible illness invites, maybe even causes, suspicion and derision, denial and confrontation, dismissal and depression. Visible illness elicits sympathy and understanding, empathy and compassion, revulsion and warm-wishes. Covered visible illness seems to call forth questions, inquiry and even open mockery.

Since April I've had more good-wishes, acceptance and plain-old understanding than I've had in all the years I've had CFS/ME or IBS. Now while I'm not seeking sympathy for my conditions, it's nice when people at least understand them or take them into consideration when dealing with the consequences of the symptoms (be it me being grumpy, or unreliable, or forgetful, or confused, or easily stressed).

One thing, seeing all three reactions to these three states of illness has been very eye-opening. It's shown just how people would react were my invisible illnesses visible. Not all of these reactions are good, but at least they're there. Even a negative reaction confirms acceptance that there is a condition present - something I'm simply not used to.

To contact Craig directly goto