Tuesday, 23 March 2010

From cross-stitch to cross types

Over the weekend I went to the Stitch and Craft Show at Olympia. Big Chief White Hair accompanied, guided, created paths, and generally was a thoroughly nice chap all day despite problems of his own, including an almost pathological fear of knitting needles. I shook hands with Jane Greenoff, who didn't mind being called a cross stitch goddess when fibro fog flared at a most inopportune moment; I LOVED her hair which was curly and silver-fox with lilac tips - she is stunning, it has to be said. And I have to say that while there were the odd incidents of doziness among my crafting sisters, the vast majority looked out for me on the scooter, offered help, showed me stuff on stalls that I couldn't ride up to, and I was overwhelmed by all the hints on how to take people's legs out from under them with my walking sticks! Quite apart from all the lovely crafty and haberdashery-y stuff, it was a very reaffirming day, despite the sore throat and croaking like a frog. I was even allowed to add to my roomfull of stash with some rather lovely South American hand-dyed sock wool.

Saturday was rather contrasted by yesterday; for reasons far too boring to mention, I sat for 4 hours in a hospital bay with other G P referrals having some tests run. The others we sat with had been there for a couple of hours longer than us, and perhaps didn't have my prior experience so hadn't brought any books or magazines with which to while away the time; instead, they talked, mostly about the length of time they'd been waiting, or told jokes. K and I joined in if we felt like it, which mostly we didn't because he had the D S and I had my knitting; but there was something almost furtive about the way the jokes were shared, initially at least. Irish, Essex and blonde all combined to make one joke which I wish I could remember because it would stand scrutiny on my English course - it wasn't a particularly funny joke because I'd heard it several times before, and it hadn't needed anyone in it to be Irish, from Essex, or blonde, to have been very funny the first time around. But this in turn led to much funnier home-grown jokes told for the sake of playing with language alone, and it has to be said made the atmosphere much friendlier and helped pass the time too. But while this humour didn't do enough, sadly, to abate the cross air, when D H had to return home so that the house wouldn't be empty for D S after school, I had offers of help to collect my sticks'n'stuff to walk to the exam room.

So don't believe it when people say chivalry is dead. In the sense of "little women can't turn door handles" it is, and three cheers I say; but what has taken its place is that men and women alike seem to evaluate better what help others need, regardless of their age and sex. Not everyone, not all the time, and maybe not at all in some places; there was an example on Saturday of help not being rendered at all despite D H requesting - and needing - it, apparently and unfortunately based on his age, sex and size. But I do witness frequent offers of assistance from people wherever I go, whether offered to me or to other people, and it belies talk of a community spirit vacuum. Men don't doff hats or hold doors open for women just because they are women; but young people and old alike do look out for each other and offer help because they genuinely think it might be needed.

Of course again there are exceptions, such as the cab driver I shouted at the other day. He sits on a cab rank not far from the house, and if I call for one at a certain time of the day, it would be odds on that he would turn up. And it would go something like this. I'd approach the cab, by which time he'd spot the sticks, be out the door, round to my side and open the door before I could scrabble for the door handle; but then he would grab a part of my body - despite my oft-repeated "no thank you"s - and lever me in through the door (I should make it clear this is a black cab). On arrival, again deaf to my "I'm Ok"s, he would grab a bit of me to pull me out. Now I'm not complaining about his offers of help, just that sometimes they seemed an excuse for a course of action he had already decided to take whether I wanted his help or not.

Anyway, about a month ago - or was it only a fortnight? - he arrived again, and my heart sank. A neighbour was on the other side of the road getting into or out of his car; and the black cab rolled up, just far away from the front door that he could get round to my car door before I got there. And, in a progressively more daring move than he had made before - each prior grab had been just a teensy bit more daring and a teensy bit more close and a helluva lot less appreciated than the one before - he grabbed me by the left shoulder and by my right arm in a one-sided bear hug. And I almost screamed "DON'T TOUCH ME!!!!" It was the accumulation of many such episodes, many such cab journeys with this man, many such tiny humiliations at his hands that I simply lost control - plus more than a pinch of fibro-fog getting in the way of a more measured reply to his hands. The neighbour across the road literally jumped; the driver certainly leapt three feet backward, and I got into the cab under my own steam and slammed the door. The ensuing journey passed in embarrassed silence, and suffice to say that although I have had need of cabs at that time of the day in the intervening period, I haven't seen him since.

I dunno what his motives were. I dunno if he looks at me and thinks poor thing, so young (I'm not!) oh two sticks, I dunno. I dunno if he's a filty letch who clocks my 40FFs and thinks the sticks render me super-vulnerable. What I do know is that however I retell the story, however much hilarity with girlfriends ensues, what was not funny was the shaking I couldn't control for the next half an hour, even talking to D H on my mobile to talk it out. The feeling that being disabled means that people don't have to listen to you any more; that they can touch you wherever and however they want; but most of all that they can ask meaningless questions of you and totally ignore the answers because they have the power.

Not THIS girl, not THIS lifetime.

And Saturday was actually a healing experience.

Tuesday, 9 March 2010

Methotrexate Mondays

are the pits. And increasingly dragging into Tuesday as well. Delightful.

Saturday, 6 March 2010

Saturday afternoon

Young Master is being collected from one of his last birthday parties at primary school. Waiting here for him is a certificate from High School to congratulate him on qualifying for entry. His uniform list includes a rugby shirt in house colours; running shoes; shin pads and a gum shield.

My baby's growing up.

Wednesday, 3 March 2010

Naughty naughty girl

No posts since July? Disgraceful!

Actually there's a good reason for that *she says thinking fast on her feet*. My last post said quite glibly that life is just too short for posts about D W P, D L A etc. Well that's true. However that has also been just about the entire content of my life for the last few months, it's been impossible at times to eat, think, sleep or wear anything else.

There aren't enough hours in the day, hairs on my head or fingernails left to expand on all the ins and outs. Suffice to say, I got the long-term award of DLA that I wanted - lowest rate care only, at under £18 a week. I had had a medical "exam", the report from which read like Alice in Wonderland, and had me shouting "I'M CURED" from the rooftops; being an ungrateful hussy and not liking fiction in my daily porridge, I got the report discredited, yay to me.

Another work of fiction reared up in my muesli, however; the reconsideration was sent out on the same day as a report was requested, sent, reviewed, written, sent back and decided upon - all on the same day, have you ever known the Civil Service to act in real time? Have you? Well I have *juts out chin proudly*. In fact this letter - which can take up to 4 days in DWP's post room - arrived on my doormat the very next day. Coincidence? Hmmmmm...

Well anyway, last week I won highest rate mobility, highest rate care. I can't walk 200m slowly but effectively any more *sob* I don't walk with a limp any more (well ok I never did, that was Alice's White Rabbit), I do need help by night and by day, and I can't be trusted to take my medication. Funny that - I could have told them all that back in July - in fact - I DID!!! but let's be fair Jen, if the Chief Executive says it was because of "new evidence on appeal" - well Chief Executives don't gloss over cracks in the wallpaper, now do they?

Oh dear I really am that sad, bitter and twisted old bag, aren't I. Oh well *rubs hands and revels in it*.

Here's the email I'm about to send to my lovely MP. Shame he's on the wrong side of th'House. Can't have everything. I've disguised names, including lovely people as well as less lovely people in the interests of fairness and not being sued. But I can't keep laying this on the shoulders of people I kinda love and who have their own fair share of evil treatment served with their daily hash browns. They've supported me, carried me, and typed for me when my own fingers wanted to give up. This is for them.

Dear Mr D
Thank you for your letter of 1 March and enclosed reply from T of D W P. I'm writing to inform you of the action we now propose to take, as it may be possible that ultimately we need your help in approaching the Ombudsman (Parliamentary Commissioner for Administration).
T's letter is sadly woefully inadequate. He glosses over anything uncomfortable from the D W P point of view, is very inaccurate in places, and omits dealing with many points about which we have complained. For example he states that if a medical report "is unclear or incomplete it will not be used by the decision maker when considering a claim". My first phone call to D W P on receiving the medical report asked for a transcription because the handwriting was so bad (which incidentally we've never received). It was later shown to have many omissions - yet we have it in writing that it definitely was used as the basis for the original decision, contrary to what has now been stated. This is why we were so shocked to find that, even with such a major source of information having been discredited, the original decision based upon it was nevertheless upheld.
T also implies that the latest decision (which we believe to be the right one) was based upon the further information supplied on appeal to the decision maker: my husband's phone call to her, and the form sent in by the rheumatology nurse specialist (A), on or around 8 February. A did send in the form as requested, but stated very clearly on it that it asked for less information than she had already supplied to D W P on 4 November, some 10 weeks before the reconsideration was issued, and enclosed a further copy of that letter; and all the information my husband supplied over the phone was obtained from my original claim form which of course was in the possession of D W P from the middle of July. We suspect, again very sadly, that the D W P's volte face has far more to do with your involvement and our subsequent request for information under the F o I Act than it has to any "new" information supplied on appeal.
As for the Freedom of Information request, we've yet to have an acknowledgement. This has not been mentioned by T at all, but we remain skeptical as to how it was possible to: issue a request for a medical opinion to the in-house medical team; have a full and independent review conducted by them on the paperwork supplied (some of it dating back 16 months or so); a report written, returned to and reviewed by the decision maker; and a letter being sent out to me with the reconsideration decision, all on the same day (20 Jan), and in fact reaching me the following morning. This is ignoring the fact that that fresh medical advice contained almost word-for-word the substance of the original decision letter, and nothing more on any of the other questions asked. We have been advised separately that letters take up to 4 days within the D W P's postal service before they reach Royal Mail, and in fact this is how long it took for the final decision letter to reach us.
We are therefore going to take the steps outlined at the end of T's letter and contact the Independent Case Examiner about these and all the issues we've raised since October. However I'm not sure whether matters relating to the wider operation of D W P not specific to my claim can be dealt with without the involvement of the Ombudsman. There is clear Civil Service-wide guidance on the issue of determinations and assessments and how the means to appeal them must be freely and readily available to those affected by them, which the D W P contravenes. It is totally unacceptable for D W P to insist that one of its most vulnerable sectors of customers should have to go hunting for this information even to external providers such as Citizens' Advice Bureaux. In my opinion this is nothing more than a straightforward, effective (because I know others have been prevented from appealing because of it) and blatant means of preventing appeals from being made. There isn't even an alternative format of the appeal form available to claimants - it has to be done in writing on a specific form - and it's for disabled people!!! I know I've mentioned it before, but no matter how torturous the route to finding the information online is, the decision letters don't even tell people it's there, much less give a direct link to it! In fact nothing on the letters suggests or implies that information on appealing can be obtained by the simple expedient of ringing D W P (simple if, unlike me, they can easily use the phone, that is).

Finally there is the matter of the signature form. Again this is something affecting not just me, but anyone who claims Disability Living Allowance. It became absolutely clear that D W P staff believe claimants have the right to sign their agreement to any report written about them by an ATOS medical advisor who conducts an examination of them. L, the lady mentioned in the last few paragraphs of T's letter, has been an absolute star throughout this horrendous experience. She has told me that no-one she approached on her floor knew that the only thing a claimant signs is a "Proof of Identity" form. In fact I'm attaching a copy for your own information. As you will see, no explanation is given to the person signing it, it is totally unclear what it is or will be used for, and I don't remember providing any supporting documentation, eg passport, to validate it (but I have a dodgy memory, which is why I have all the documentary evidence supporting my complaint). Nevertheless the implication of this is enormous - that when people do take what can be the huge and stressful step of complaining about a doctor's report, pitting their word against someone they might believe is unassailable, the member of staff dealing with them is prejudiced by the belief that they agreed the report on the day it was written. L herself, the "operational Team Leader" was totally unaware that the report could have been finished up to a week after the doctor left my home, and without my ever having read it. I am concerned that because this report was ultimately discredited, these issues will be simply swept under the carpet.

I am hopeful that at least some of these concerns will be addressed fully by ICE. However I did want to warn you about the bigger picture. I totally appreciate everything you've done on my behalf, and for being prepared to become involved, especially at a time when you must be extremely busy with preparations for the election. For what it's worth, I'm sorry that we have such an old-fashioned election system based upon party ideologies and not about the people we think can support and represent us the best! Good luck in May.

So there we have it. ICE is the Independent Case Examiner and has nothing whatsoever to do with breakfast, weetabix or otherwise. Receiving what I should be getting, and a nice backdated lump sum to boot, will act as a panacea to my bank account, but I won't be bought off so easily. This one's for everyone for whom questioning the word of a doctor, facing the impossibility of leaving the house to get an appeal form, completing that form in writing with damaged hands, or no hands, or just facing beaurocratic red tape, is one stressful, pain-causing, hunger-relieving, independence-creating step too far.