Sunday, 17 September 2017

A 'No' Day

Today is a 'no' day. A day where I'm not obliged to do anything I don't want to. A precious day off.

Hi. I'm Jaime. I am an artist and maker, reader, writer, bibliophile and library assistant. I'm also a wheelchair user, severely, chronically ill and disabled - it's a long list but the basics are Ehlers Danlos syndrome, gastroparesis, autism, and severe mental illness. My middle name should probably be 'stubborn', I used to be a classic overachiever until I was ambushed by my own brain and body, and I'm having a 'no' day.

Yesterday afternoon was spent at the hospital I go to for my gastro stuff, having a colonoscopy. For those of you fortunate enough to be unaware of what this entails, I spent the day before  yesterday drinking industrial quantities of very strong laxitives which resembled liquid plastic lightly flavoured with toilet cleaner. Oh, and telling myself firmly I was not, under any circumstances, going to throw up. Because then they'd make me do it again. I choked most of it down, then retreated to the bathroom and sent my husband to visit his parents. It was not pretty and I really, really didn't want an audience.

So, yesterday, I got up at six o'clock in the morning (did you know there was a six o'clock in the morning?!) and choked down more of that ... stuff. Then I was sedated not nearly as heavily as I'd hoped and had a camera shoved into somewhere not meant to accommodate videography equipment, and made to roll back and forward to make it go round the bends, only to be told I'd not drunk enough liquid plastic/toilet cleaner combo and would have to do it again in six weeks. Very, very unimpressed Jaime.

After taking the cannula out of my elbow myself, in the complete absence of staff in the recovery room, demanding my clothes and my husband when someone appeared, and effecting my escape, said husband wanted to go shopping for a new coat. I didn't, if I'm honest, but the poor bloke put up with two solid days of me complaining about it and hours sitting in a waiting room, so I kind of felt obliged.

Needless to say, I was absolutely shattered when I got home. And, for that matter, when I woke up again this morning. Hence today being a 'no' day. I'm still wearing my pyjamas and dressing gown at five past seven in the evening, I've alternated between my bed and the couch all day and left taking the dog out to my husband (about which I do feel somewhat guilty as he's basically my dog).

It took me a long time - like, a really long time, decades - to be all right with letting myself have a day off. In fact, it's still hard and there's still a little voice in the back of my mind screaming frantically that I'm wasting time, don't I know I'm not doing anything useful?!

But that's just it - I have to keep telling myself this, but I am doing something useful. I'm resting, I'm healing and recovering, pacing and doing my best to manage my health, or lack thereof. And I am worth the time it takes to do that. I'm reading Doctor Who books and snuggling with my doggie and telling my husband he's awesome. These are worthwhile things. So today, just for a while, it's a 'no' day.

Monday, 13 June 2016

Things I Wheely Need

Every so often, I end up with a little thought knocking around in my head; tiny, but persistent. Everything I do, every move I make and every aid, adaptation or accommodation I have, it whispers
"you don't really need that, though, do you? you could manage without if you'd just try hard enough"
That. Thought. Is. Poison. Nothing else. Just the spite and bile and viciousness of all the bullies and bastards I've ever been gullible enough to listen to, echoing around my psyche.

Its most recent iteration has been "you don't need that big expensive power wheelchair". Every time I stagger to the back garden and lean on the fence while the dog eats dandelions (no, I don't know either). Every time I stand and reach for something at work, or I go out with my crutches because my wheelchair won't go in someone's car. Inside, I'm yelling at myself for wasting money on such an expensive piece of kit when I could manage without. Although, I blame a lot of it on a particular supervisor where I work. That's a story for another day, though.

I think the universe decided to teach me a lesson. Yesterday, while out walking the doggie-faced one, I went up a kerb, as I have thousands of times before. Only, this time, the cable connecting the controller to the chair was hanging loose, I don't know how or why, and it snagged under the back caster of my powerchair.

Unfortunately, I noticed this when the back caster frayed a hole in the cable and the chair stopped going. I tried all the obvious things - turn it off and on, move the joystick around, etc., and then I looked down at my wheels to see if I was caught on something and spotted the cable, and my heart just sank. I managed to get it from under the caster, by rocking the chair on its suspension. I ran my hand down it hoping fervently... and found a hole in the outer casing, displaying inner, insulated wire and frayed copper strands. As my brain went blank (apart from "huh, that explains it" and some serious cursing) guess what? It started to rain. Just fabulous.

I wasn't more than two minutes from home, but there's no way I could get my big beast of a chair back there alone. And Baxter, sat patiently next to the chair, was already starting to shiver (he'd turned 8 the day before). So, I phoned my parents for rescue - for the dog, not me! Once they were on their way, I donated my coat to the dog, who sat wearing it like a cape, and I phoned the breakdown assistance thingy that's included in my chair insurance from Fish.

I have to give them their due, they were fabulous. First things they checked were

  • are you somewhere safe? not in the road, etc? (yes)
  • do you need any medication or medical treatment imminently? (nope, got it with me)
  • is it raining? (yes)
  • do you have a rain canopy? (nope)
Then it was details of what had happened to the chair, a good description of where I was and where I needed to go, and a couple of minutes wait for a call back, where I was told they'd sent a motorcycle recovery firm who'd be there within the hour.

For the first time I've ever used something like this, it was remarkably easy and straightforward. My parents arrived in their car (which won't take my chair, sadly) and took the dog back to my house. My dad stayed with him, and my mom brought the car back so I could sit in there and wait, which was a good job because it was absolutely bouncing down by then. I gave up, threw my waterproof coat over the controller and frayed cable, and just watched the rest of my chair get soaked from the car.

Motorcycle recovery guy was very nice, ingenious and bloody strong as well, and a combination of those three and me dithering about kicking casters into alignment got the chair into the truck, up the road, second left, to the top (really, I was *that* close to home) and then out and up my ramp into the house. I did offer brews and biscuits, but he declined. Which, given how scatterbrained I was coming off is fair enough! I don't think I'd want sustenance prepared by someone who's just struggled to tell you her name, after asking you to repeat the question twice. Brainfog + sensory processing crap + autism + super sudden change of plans + compulsory telephone calls = a very stupid Jaime.

So, back to this whole universe-teaching-me-a-lesson thing. Well, I knew I couldn't get to work without my chair - the bus stop is *way* too far to walk, and the one at the work end of the journey is even further away from my library. And I couldn't have worked once I got there (there is one department that could loosely be considered a desk job, but they won't let me do it at all most of the time, let alone full-time til my chair's fixed).

So, Monday morning, I'm making more calls. To the insurers, Fish, in the hope my accidental damage cover will pay for repairs. To my wheelchair wizards at Mobility Choices, to see if they can quote me for repairs and order the parts. And to work to say "I can't come in, my wheelchair is broken".

As an aside, an interesting point arises out of that last one - what type of absence does it go down as on the system? It's not sick leave, I'm not sick. It's not dependent leave, my wheelchair is not my dependent (rather the opposite really!). It's not compassionate leave, no-one has died and while I do find it surprisingly upsetting to be wheelchair-less, it's not going to count! I suspect they'll try and call it sick leave, which will be an argument in the making as I think it'll put me over the first absence management policy trigger (i.e. we're not saying you aren't/weren't sick but you must take less sick leave!).

So, I have an extra two days off, maybe longer. There's no way it's going to be sorted by tomorrow so I need to find somewhere that can rent me a chair for a week. I'm still hoping they'll magically have all the parts and a spare slot this afternoon, but I know it ain't going to happen.

Normally, I'd be thinking "yay! time off!" and I was, to start with. Then I started thinking about what I'd do today.

I could go swimming! but I can't get to the pool without my chair, nor can I manage to move about inside the building if I get a taxi, added to which no taxi driver will want this job - it is literally less than a minute's trip.

I could return my library books to <local branch> and get some of this paperwork digitised and shredded! except I can't get to the library, which is right by the swimming pool. I also can't walk up either the stairs or the ramp to the entrance, and I can't stand at the photocopier to do my scan/email/shred routine. I can't sit at the photocopier either - no room for a seat and I couldn't see or reach. Not to mention getting a large pile of paper there when I can't even transport myself.

OK, this isn't working. I'll carry on tidying and de-junk-ing the bedrooms. Great plan, small snag - next thing that needs doing? Take a big box of stuff to the charity shop, and some old furniture to the tip (to go in the furniture reuse container, not to be destroyed/landfilled. I take my recycling seriously!). OK, I couldn't do the latter *with* the chair, but I could have done the former, which would have given me room to work around the extraneous furniture.

Er, there must be something I can do. I know, I'll bake! Except that we need eggs for that, and I can't go out to get them. Nearest shop? Less than a minute's walk for husband. Nearest supermarket? Less than ten minutes. Can I get to either? Can I hell.

I'll take the doggie for a walk. Um, except, I can barely stay on my feet to take him in the garden because my left ankle's still uber-trashed from that last bad fall, and I'm already so tired I'm using the stairlift if I have to go out, both to go down and come back up. Normally, I'd only use the stairlift for coming back up because it's slow and noisy and I can usually manage down the stairs, because I know I'll be getting into my wheelchair at the bottom and won't have to walk any more. 

[We live in a first floor flat with a stairlift, wetroom, one bedroom and one box room that's become our office/my workroom. It's not possible to get wheelchair accessible housing that's big enough for two people to live in while under 55, in my area. Everything suitable has a minimum age of 55, 60, or 65 and refuses to make exceptions for someone under that age regardless of need. It's disablism at its finest, but I can't manage to make them budge.]

So basically every useful or entertaining thing I thought about doing today? Anything that requires leaving the house? is basically out, because I don't have my powerchair to use.

So, next time I start tormenting myself with "you don't need that powerchair", I'm going to come back, re-read this, and tell my inner doubter to go forth and micturate.

Thursday, 9 January 2014

So what's normal?

My life has changed drastically again since the last time I wrote here. I'm now employed, in a job I love, constantly exhausted, more financially secure than I have ever been before, still ever-increasingly physically impaired, and the rotting corpse of my mental illness, which I thought was safely dead and buried, is oozing and groaning and attempting to rise from the grave. (I'm with Harry Dresden on this one: there should be some kind of law against ever needing to kill anything more than once. It's just unnecessary).

So, what's on my mind right now to bring me back here? Oddness Versus Normality, or, Working Amongst The Normals.

The most basic, simple fact of this situation is that, bluntly, I am not normal. Physically or mentally. I am Different. I always have been, and it's become less and less easy to hide - to 'pass for human' as I call it in my own head - and less and less easy to want to hide, as I get older.

It's been suggested numerous times that I have Asperger Syndrome, and I tend to agree - I just never went through the formal diagnostic procedure because at the time it wouldn't have changed anything about my mental health care and I just didn't want another label to add to the string.

For those not familiar with it, Asperger Syndrome is an autistic spectrum condition, and is classed as a developmental disorder. People with autistic spectrum conditions - especially those who feel that they are simply different, not in any way deficient - often refer to themselves as neurodiverse, and to what I call the Normals as neurotypical. Asperger Syndrome is not a mental illness, not a learning difficulty/disability/difference, and it's not 'bad behaviour'. Asperger's is generally diagnosed when you're a kid - usually in your early school years when everyone is learning to be a social being, and it becomes apparent that you are, well, not. Autistic spectrum conditions all affect what are known as the 'triad of impairments', namely

  • social imagination (playing 'Let's Pretend', seeing the situation through another's point of view, playing Devil's advocate and the like)
  • social communication (interpreting subtexts and non-verbal communication, understanding metaphors, analogies and other non-literal language, deducing or inferring further information from context, understanding social boundaries and appropriateness, etc)
  • social interaction (not understanding unspoken social rules, social contexts, difficulty making and keeping friends, trouble working out what other people know or are thinking or feeling)
 As you can probably imagine, the world is a confusing, unpredictable, illogical, overwhelming and frightening place if you have an ASD. People with Asperger's tend to be of or above normal intelligence, and don't generally have the global learning difficulties associated with low-functioning autism. They may well have specific learning difficulties like dyslexia or dyspraxia, and conditions like ADHD and epilepsy are more common. Sadly, because it's difficult to be an Aspie in a neurotypical world, depression and anxiety are often found in people with Asperger Syndrome as well.

Other things common in Asperger's are a love of routine, and what's often known as sensory integration issues. The routine thing is quite simple when you think about it - when all else seems to be totally random chaos and you can't seem to control or even predict what will happen to you, routine is a lifesaver. It's an anchor to cling to while the world tries to wash you away. Consistency is safe. If you deviate from the routine - the rules - there's no telling what might happen, but experience and cynicism say it's not going to be a wonderful surprise.

The sensory integration issues are a little more complex, and can be really hard to understand if you've never experienced it. Have you ever become so used to a sound that you only seem to 'hear' it once it stops? Once you've been dressed for a while, do you stop noticing the feel of the clothes on your skin? People with sensory issues can't do that - they can't control the 'volume' of their sensory inputs, the information coming into their brain about the world around them. They can't dismiss or filter out the 'constant' inputs as being irrelevant to the ongoing experience, and as a result, they get *all* that sensory information, at full volume, full detail, *all* the time. Can you imagine that? It's been described as stepping out into a carnival after spending a day in a sensory deprivation chamber. It's overwhelming, it's *too much*, and because you can't filter and prioritise it, it all seems threatening, it kicks your fight and flight response into high gear, or when it's even too much for you to do that, your brain just shuts off and goes away, leaving you blasted by a hurricane of sensation with no protective filters at all, no cover, no shelter.

Is it any wonder that in a loud, crowded, bright place, an Aspie can 'meltdown' and become hugely distressed? To me the surprising thing is that the Normies actually *like* that stuff, and can *ignore* most of it! Quite aside from when it reaches meltdown level, there are other effects of this. Sometimes when you're trying to filter, you manage it *too* well, and filter out everything - including the person behind you who's just yelled 'excuse me!' for the tenth time because you're in the doorway. Or the sound of the phone/doorbell. Or your boss asking you a question.

Speech is a nightmare for me. I can't distinguish the voice of the person I'm trying to listen to from all the background noise. Sometimes they're drowned out by the buzzing of the flourescent lights, or the fan on the computer. Sometimes they're booming away so loudly it physically hurts, but so is everything else and I can't untangle the noises. Phones seem to flatten sounds - I know they cut out highest and lowest frequency to save on transmission bandwidth - and that seems to smush all the sounds together even more, making it one single noise instead of many strands of sound. I detest phones. Whoever thought they'd be the best form of communication for *everything* you *must* do as an adult human being was as Normie as they come, I swear. Those things are evil. Add in speech that rapidly deteriorates under stress and anxiety verging on panic because of all the phone calls that have gone way south before, and I can't make out what you're saying, nor can I speak comprehensibly to you. It's a disaster.


So, anyway, after that huge digression because I really want to keep pretending that nothing is happening at work, everything's fine, move along, nothing to see here folks, I'll get to the point.

I'm coming close to losing my job - the job I love, am very proud of, and which, until my supervisor and the manager who deals with Personnel stuff sprung a 'you're failing' meeting on me with no warning, I thought I was doing pretty well. Apparently, I'm extremely wrong about that.

I interrupt too much.

My social skills are... lacking (i.e. non-existent).

BigBoss and BiggerBoss have noticed me interrupting and they Do Not Approve.

Lack of BossApproval is a Serious Problem.

I don't pay enough attention to the Main Desk, when I'm working across the library. I don't come back to the desk if there is a Customer who is having to Wait, and WaitingCustomers is an even more Serious Problem than lack of BossApproval.

Let's look at *why* this might be happening.

Interruptions. Well, when I applied for this job, did the interview, and the induction training, and in every corporate policy thingamajig I've seen, much is made of team working, and inclusion, and encouraging everyone to contribute and making the most of the skills and abilities of each member of staff. 'Initiative' crops up frequently.

However, it appears that this is what is generally known as Bollocks. In actual fact, people at my level are supposed to shut up and know their place, switch their brains firmly 'off' for work, be sifficiently awed and worshipfully respectful of anyone with any seniority regardless of whether they know anything about my job or I've got reasons for doing things a bit differently to everyone else (i.e., because I *am* significantly different to everyone else, maybe?!). While I'm being a good, submissive little carbon copy, I'm supposed to make sure everyone knows how innovative and co-operative our organisation is, how we encourage communication and initiative and really make the most out of skills and abilities that staff have to contribute to the team.

Needless to say, poor old Aspie me is completely fucking confused by this. I only have this much information on what the hell is going on because my husband translated a lot of it from Normie to Aspie for me. I'm still not completely sure what I'm doing wrong or what I'm supposed to be doing instead, especially as my customer service skills are so poor my job is in danger but customers keep complimenting me. One guy followed me halfway across the building for an opportunity to say thanks for the help I'd given him. Doesn't sound like a fail to me, but what the hell do I know, clearly?!

Regarding the CustomerWaiting disasters, there's a few bits of info needed to make sense out of this. I'm a power wheelchair user, even though I can stand and walk a bit. If I'm not in the open area surrounding the main desk, I can't see over the shelving racks to judge how busy it is at the desk and if my help is needed. Apparently if you're standing, you'd have to be really quite short (like, less than five feet tall, which is well below average) not to be able to see at all, so my colleagues can see it far more easily than me.

Likewise, my colleagues can all vary their walking speed, jog or even run if they need to. I'm stuck with a maximum speed of under 4mph, and turning is massively slower than that. A lot of the time I hear the phone ring, get back into my chair (if I'm shelving on the bottom row, I sit on the floor. Leaning over from the chair to do it messes with my blood pressure when I sit back up and I dislike passing out, especially at work), start it again if it's gone into standy or I've switched it off, turn round, head for the desk at my <4mph top speed, and by the time I can see the desk across the building several of my colleagues are already there and I'm no longer required. I assumed the thing to do was to go back to whatever I'd been doing - obviously they haven't seen me approach, realise I'm not needed and turn around and go back, and have instead assumed that I've not moved from wherever I am.

I'm hoping against all hope that this is simply problems caused because I don't realise or conciously acknowledge the limitations placed on me by my disability, so I can't point them out to supervisors/managers, and I don't think they're noticing that I *am* trying to do these things but my limitations are more, er, limited than my colleagues.

I declared my EDS, fibro, dysautonomia, etc when I applied. I also listed my mental illness, but didn't really make a big thing about it given it was so stable at the time, and I thought it was actually, finally dead. I didn't mention my Asperger Syndrome, partly because I've never had an official 'paper' diagnosis, and partly because it carries even more stigma than the other two as daft as it may seem.

It's taken me two days to write this. I really want to keep my job. Going to work has turned from anticipation and glee to subdued dread, 'what am I going to screw up today?' already and after thinking I was doing well then being told I might lose my job, I don't feel like I can even trust my own judgement on anything work related. I just don't know what to do or think or say. And of course it plays into every bad experience I've ever had around not fitting in, not saying or doing the right thing, not making friends, not being able to grasp the rules, failing, all that stuff. Like I actually needed any more trauma in that particular area.

I just don't know any more.

Tuesday, 22 January 2013


I've been thinking about writing this post for months now. I've held off because I am afraid. Afraid of the reaction get, afraid of being sued, afraid of being accused of rocking the boat, making things worse for disabled people, of being on their side.

I don't think care any more.

I've already been deliberately trying to cut myself off from the campaigning stuff, though it breaks my heart to do it and I feel so incredibly guilty about it. I just can't put up with the level of abuse, accusations, guilt trips, emotional blackmail, and sheer viciousness that gets directed at me simply because I don't agree.

I'm not saying anyone else is wrong. I'm not saying that anyone else has to change their mind. I'm not saying that I have discovered the one true and only way; I'm simply saying that I don't agree with some of the priorities that has been set by the people leading the charge.

To me, this is a big issue. I've been bullied for nonconformity all my life. I've never felt like I belonged anywhere. So maybe I'm a little oversensitive about this, but I've done my best to be reasonable about it, I've tried as hard as I can to see other people's point of view even if I don't agree with them.

Today, on twitter, Sue Marsh tweeted that my MP, Michael Meacher, was going to visit her in hospital. I commented that I was angry he had time to go visiting campaigners from someone else's constituency, in a London hospital, but didn't have time to see one of his own constituents who desperately, urgently needed help.

That constituent was me. I've been dancing around this for a couple of days on twitter, worried about the backlash and about being sued for libel or equally ridiculous overreactions. As it seems that the backlash has started already - I'm avoiding looking at my Twitter feed as I dictate this, because I'm scared of what might be there – I suppose might as well go the whole hog, tell the truth and shame the devil.

One of the reasons I was reluctant to write this is that I'm not sure what I want from it. It is now far too late for my MP to give me the help I so desperately needed. I don't want an apology because I don't believe it would mean anything. And I can't imagine myself going there for help in future because I can't afford to take the risk that I will receive the same reception.

Given that I'm getting the abuse I tried to avoid anyway, I may as well publish and be damned.

This is the original email I sent (at the time, I was not able to use a phone - my speech was too bad).

Jaime Smith

I tried to go to the constituency office today - unfortunately it's hopelessly inaccessible, which I was surprised and dismayed by. After enduring jolting my powerchair over the cobbles, I sat outside the large step trying to attract someone's attention, and failing totally. There's not even a doorbell to ring.
The reason I wanted to speak to someone is that I have a DLA appeal that's got to the Tribunal stage. It's already been postponed once on 24/09/12 and the new date is 6/11/12, with evidence to be submitted a minimum of a week before.
I have told the truth - I followed the instructions and notified DWP about a change (deterioration) in my condition as I am obliged to do. They asked my old GP practice for a report - which was full of inaccurate statements by a Doctor who had not seen me. As I changed practices due to moving house, my old practice won't let me have the information that proves the form was filled out by a Doctor who wasn't seeing or treating me.
They decided I did not have any increased care needs. The needs acknowledged on my decision letter went from about eight to a single one, and my award remained the same - lowest rate care, and high rate mobility.
There was no date on the decision letter I received. I played phone tag with DWP for weeks and was told three different dates for the decision, and that I could not appeal, could not appeal yet, and that I needed their permission to appeal.
I sent in an appeal anyway, and was subjected to a 'medical' by someone from ATOS at my home. The report is ludicrous - it doesn't even get my diagnoses correct, and gets less accurate from there. Almost none of the guidelines printed on the form for use when filling it in have been followed.
When the reconsideration decision came back the same, I continued with my appeal. I tried to get advice from CAB but they refuse to make reasonable adjustments to allow me to access their services, while being fully aware this is against the law. I called Oldham Council and asked if they had a welfare rights officer - it took weeks to get an appointment, he offered no advice other than, 'there's not enough medical evidence' and 'try CAB' and I haven't managed to contact him since I saw him in about July.
I did my best to prepare my appeal myself. I asked my physiotherapist for a letter or report for the tribunal and she flat-out refused, and got angry when I asked for a reason. I asked my GP and he repeatedly promised that he would help, but it had to waiting until I had a date for the Tribunal, even though I told him I'd get less than two weeks notice.
In the end, at the very last moment, my GP wrote a letter that stated I was his patient and had an incomplete list of my diagnoses. This is entirely useless for a DLA tribunal and I'd explained what was needed four times at least. The evidence I submitted, including a social care assessment which gave an accurate picture of my care needs, never arrived. I only found out about this on Friday afternoon, with the Tribunal hearing at 11am Monday 24/09/12.
The Tribunal was postponed, with a formal warning that they would exercise their discretion to look at the whole award, not just the care component I had appealed. I was warned in the strongest terms that without further specific medical evidence from a Doctor who saw me regularly about my mobility problems, I was likely to lose my whole DLA award, backdated 12 months.
I cannot get a letter from my GP - he has reneged on his promise and will not budge. PALS were useless and treated me as a nuisance, siding entirely with my GP. My GP offered to ask a 'community matron' to assess me - but waiting lists are huge and because he lied to me and promised a letter he now will not write I don't have time to wait for that, and as he won't put it in writing for me I can neither ask for the tribunal to be postponed again, nor trust his word after last time.
I cannot get my medical records. NHS Oldham says I must submit a seperate request for each person I have seen. They clearly have no intention of meeting the 40-day time limit prescribed by law, let alone providing information in time for the tribunal hearing. PALS informs me it will cost £20 per request just to look at my data on screen and more if I want copies - this is also contrary to what the Information Commissioner's Office website states the law to be.
I've probably seen over a dozen different people in the past 18 months and don't know which set of records I need. I cannot afford to ask for them all, irrespective of the time limit I'm under.
I've adhered to the rules and told the truth all along. Because other people didn't, at various points, I'm now facing having to withdraw my appeal - losing several thousand pounds of desperately needed funds in backdated payments - and in essence, admitting I lied, when I did not.
The evidence to prove I didn't lie exists, but my GP and physio are putting their own financial and legal interests before the welfare of their patient, and there's nothing I can do about it.
The Tribunal told me to get advice, which is not available, and medical evidence on my mobility, which is being kept from me, but despite advising me to get these things, will not help, or require the relevant bodies to provide it - they have the power to do this in regard to medical evidence but have chosen not to.
The entire system, start to finish, DWP and Tribunals Service alike, has been designed to make the claimant give up and just accept a wrong decision. Obstructive staff on the phone, contradictory advice, documents that 'disappear', huge stacks of paper to intimidate, undue formality, the Tribunal chair's aggressiveness and her attitude that my speech impairment, which worsens with stress, indicated an intellectual impairment, and her complete willingness to accept the ATOS report in its entirity, including where it contradicted itself... I cannot count the problems I've experienced with this process.
This isn't justice, it's a concerted attempt to force their desired outcome. I've tried everything else and I'm running out of time. The DWP has thousands of staff, lawyers, doctors, and a decided history of using ATOS to rig the game, like they did for Colin Traynor, and Karen Sherlock, and everyone else on Calum's List. They've got information and power and authority spilling out of their ears.
I've got myself, typing with dislocated fingers and trying to read legal documents through tears of pain, and the encouragement and experiences of a few friends - all as impaired as me or more so - who've been subjected to this before, and are using up precious energy they need for their own fights. Even my Doctor won't help me, because it means going up against the DWP, and he's too scared. I'm not, but I can't gamble what DLA I get on such biased odds. I really hope you can help in time, somehow.
Much as I need the money for essential pieces of equipment that Community Occupational Therapy won't provide, it's not about that any more. I want justice. I want the DWP, and ATOS, and the Tribunals Service, to stop treating me as untrustworthy and implying I am attempting fraud. I want them to acknowledge my life is stupidly difficult and that they have spent an entire year heaping insult high on top of injury.
Many thanks (and apologies for lack of brevity)

this is the reply that I got:

BUCKLEY, Shirley
to: Jaime Smith

Dear Mr Smith
I appreciate you would have found it extremely difficult to access Church Lane, unfortunately it is a grade 2 listed street and the road and footpath, which I agree are not user friendly for prams and wheelchairs, cannot be altered due to the rules and regulations that dominate listed buildings.
I am also sorry that you were unable to gain access to the office, but if you had rang first and made an appointment (as we don’t see people without an appointment, we do not have the staff or facilities to do so) we would have made sure someone would have met you at the door and assisted you as long as this was in the morning whilst the office was open.
The problems you have seem very serious, particularly if the occupational health services and your GP are reluctant to assist you. Whilst Michael can write to the Tribunal in support of your appeal it will be worthless unless you have some further medical evidence to submit to back up your claim and unfortunately it is true that you could face losing all your DLA and mobility component if you don’t provide enough evidence of your continuing need.
We cannot offer welfare benefit advice, we are not trained to do so, we can only try and point people in the right direction, support appeals and applications by letter and in some cases liaise with the DWP about complaints and queries.
Have you been in touch with Oldham’s Welfare Rights Service, they are very helpful, but admittedly they will be very busy due to the fact that everyone on benefit is facing assessment of some kind or other.
Do you want me to refer you to the Welfare Rights Service to see if they can assist you and perhaps speak to Michael about supporting your appeal? I think it will be difficult to get another extension on the date, so I think we need to consider the options quickly in order to meet the 6 November deadline?
Can you get back to me and let me know please
On behalf of Michael Meacher MP
Shirley Buckley

Oldham Constituency Office
Michael Meacher MP
11 Church Lane
Oldham OL1 3AN

Tel 0161 626 5779

A couple of points: even in a grade II listed street, a doorbell and a temp ramp are possible. Or why not choose an office somewhere accessible? God knows there's no shortage of empty business properties in Oldham, the place is dying on its feet.

Nowhere on the web page are surgeries/open access times listed. There is no indication of how to find out, nowhere does it tell you to phone for an appointment, so how am I supposed to know? Additionally, at that point my speech was so bad I was unable to use the telephone, because everyone I phoned thought I was a prank caller, and hung up on me. The last time I had emailed my MP for something, it had taken over a week to be acknowledged, and I didn't have that kind of time left. So I made the exhausting trip to the office looking for help.

I'm not sure whether mention of occupational health services came from; I'm self-employed at the moment, I haven't worked for an employer since 2008 at which time I was not physically disabled. I honestly think this indicates that the letter I wrote has only been skimmed, not read properly – this opinion is reinforced by the rest of the reply.

She says they can "support appeals and applications by letter" and "liaise with the DWP". This is actually what I was hoping they would do for me. However, in the same paragraph, she says that a letter from my MP will be of no use. So which one is it?

The last two paragraphs, about referring me to Oldham Welfare Rights Service, really does go to show that she didn't read my email. I said in that I'd had one appointment with someone at Welfare Rights, he had told me that I would have to procure more medical evidence, and I hadn't been able to get back in touch with him since, despite repeated efforts, so I'd been to the first Tribunal on my own. I'd had to wait, I think, a couple of months for the first appointment anyway, and as my second tribunal was in a week and I had no hope of getting it postponed further, another referral to the Welfare Rights people who'd let me down once already wasn't going to be of any help.

I got this as a follow-on shortly after:

BUCKLEY, Shirley

Please accept my apologies if I mistook you for a man when in fact you are a woman – sorry!! I should have remembered that the name Jaime is not gender specific but when I noticed the name Fay in your email address I realized I had probably made a mistake. Can you also give me an indication when you came to the office please. If it was in the morning, when the office is open (between 9 and 1 every morning except Thursdays), I will need to speak to someone on the desk as you should have been able to attract their attention very easily as our reception is on the ground floor

We don’t have a bell on the outside because people ring it continually and for security reasons we are not allowed to open the door without prior arrangement.


Shirley Buckley

I was absolutely bloody frantic at this point; without my DLA we wouldn't be able to survive. It made me so ill, the stress of it; I wasn't sleeping, I wasn't eating, I couldn't concentrate, couldn't think and was getting psychotic symptoms and feeling suicidal for the first time in ages. This was my reply to her:

Jaime Smith
to: BUCKLEY, Shirley


Dear Ms Buckley,

I was not aware I needed to make an appointment in advance - as I cannot use a telephone most of the time, it would have been very difficult to do so anyway.

Have you not considered moving offices to somewhere that offers access to all constituents?

I have been in touch with the Council's Welfare Rights Officer - as I said in my email I waited weeks for an appointment, got litle advice other than 'you need more medical evidence', and have been unable to get any reply to my attempts to contact them again, despite my tribunal date having come and gone.

If you think that someome there might be of help, I would be glad of a referral. I would also be glad of Mr Meacher's support.

Is there anything you can do to help me get the evidence I need? My practice are not complying with the law on Data Protection Actually subject access requests. The law allows them to charge up to £10, including copying costs, for computerised records. They have told me they require £20 to make a request to see my records on-screen at the practice, and more money will be required for any copies. The law is that requests should be fulfilled as soon as possible, and at any event within 40 days. My practice has indicated that they intend to take around that length of time to issue an appointment date to view my records at their premises. Before the Information Commissioner's Office will look into it, I need to have made the requests, paid up front, waited 40 days and exhausted the practice's complaints procedure, and I don't have time for that.

Is there any chance Mr Meacher would consider writing to the tribunal and asking them to procure the necessary evidence? According to the Tribunal Service benchbook they do have that power if they choose to exercise it.

Mrs Jaime Smith.

Jaime Smith
to: "BUCKLEY, Shirley"


Dear Ms Buckley,

Sorry, just seen your second email. To be honest, I'm kind of resigned to being addressed as 'Mr' and don't take much notice any more. It was about 1200 - 1230 when I was outside the office - I called out, and tried tapping on the windows, but couldn't see inside so don't know if anyone was there, and had difficulty reaching the windows so probably didn't make much noise.

Jaime Smith

I was really trying hard to be constructive, and to stay polite and as calm as possible. All that was going through my head by this point, was "help me, for God's sake help", so I think I did a fairly good job of pretending to be a rational human being at that point.

Then I got this in reply:

BUCKLEY, Shirley
to: Jaime Smith


Dear Mrs Smith

We have considered moving premises but offices in the town centre are extremely expensive and many other offices we have looked at are also not very user friendly. If we had an office outside the town centre this would not be as easy to get to for most people. At least this office is adapted inside with a disabled toilet and wide doors etc. If anyone comes to see Michael with mobility problems he is able to see them downstairs. I accept a ramp would be very helpful but unfortunately the footpath is too narrow to accommodate a ramp, but we do assist people in and out of the building (even to the end of the street) if an appointment is made.

I have spoken to Susan the lady who sits on reception in the morning and she says she normally notices people outside as we have an open door and a reception area with an open glass window. She said she failed to hear anyone knocking however and says she is sorry but maybe she was away from her desk when you called.

We don’t a have a bell outside the building anymore but we do have a bell inside the building. This is because the bell outside was abused and people working alone in the office are not allowed to open the door even if someone rings it due to health and safety reasons. We are closed in the afternoons because it is not unusual for people to be working alone. The bell inside is just inside the door. I accept you may not have been able to reach it.

Michael does have an advice session at Chadderton Court, 451 Middleton Road, Chadderton (opposite Chadderton Town Hall) and this is a very accessible building, but like other similar buildings in Oldham it has a car park on a hill, which I am sure would be difficult for a wheelchair user to negotiate, but a taxi, lift or bus could drop you off outside or if you own a car you could park on the Asda car park as there is a crossing almost facing the building.

Coming back to your problem – this is an issue that is regularly raised with us and unfortunately far too many people are having their DLA removed altogether after requesting an increase. The ATOS assessment is standard anyway and if you have been awarded a category of DLA then it may be prudent for you to cancel the appeal and wait until you have had time to collect better medical evidence before requesting an increase.

If you are appealing against a decision to refuse you any DLA then obviously there is going to be a problem if your GP has just copied your medical notes and is not willing to provide more substantial evidence.

What do you want to do? Michael can write to the Tribunal for you explaining your position but he will need further details including your national insurance number and the address of where your appeal will be held?

Shirley Buckley

Oldham Constituency Office
Michael Meacher MP
11 Church Lane
Oldham OL1 3AN

Tel 0161 626 5779
Fax 0161 626 8572

This one misses the point quite spectacularly. Wide doors are normally installed for wheelchair users, which is a very little use in building up two steps with no ramp. My power chair, which is a lightweight foldable model, weighs about 60 kg, without me in it – it's extremely unlikely anyone could have "assisted" it into the building, and I'm not sure what they meant to do with me while they hauled it up the steps. Equally with two large steps at the front of the building, and no handrail, the disabled facilities inside the building become somewhat irrelevant.

Other offices are too expensive – firstly I believe they claim that money back on expenses. Secondly, I believe that as my MP is supposed to be my representative, there's no excuse to disenfranchise a disabled person in this way. Thirdly I'm not convinced that the office on Church Lane is any less expensive than elsewhere.

They've also taken out the bell outside, because it was being misused. Church Lane is a tiny cobbled dead end - almost everyone I know, some of whom have lived in Oldham for four or five decades, doesn't know where it is. It doesn't go anywhere, there's no through traffic of any kind – I spent almost quarter of an hour sat outside the office window, hoping for a passerby whom I could ask to nip in and attract attention for me – I didn't see a single person. Even if the bell had been being misused, I don't think it's appropriate to sacrifice any possibility of a person with impaired mobility gaining access to their MP for the sake of a staff member having to look out of the window every so often and see if anyone is waiting. I craned my neck to look into the hallway as best I could, and saw no bell. Also, if the bell inside is so close to the door is to be possibly within my reach, it's just as prone to misuse as one outside at wheelchair user level.

There's no mention of when the advice surgery at Chadderton Court is, and this information is not available online – I'm not sure how anybody's ever supposed to attend the surgery without ringing up first. That's also not the easiest place for me to get to, and if the surgery is while Dave is at work, it would mean two bus rides and most of an hour – always assuming that I can get on the first bus which arrives and it's not full of prams, which is unlikely.

Another indication that she hasn't actually properly read the emails I've sent – I clearly said to start with that I'd been awarded lower rate care and higher rate mobility as I'd had before despite an increase in my care needs. As far as I'm aware, an ATOS assessment is not standard for DLA application; I believe she may be getting confused with ESA. I believe most DLA claims go through without a ATOS assessment.

Again, not reading properly. I didn't say my GP had copied my medical notes; I said he'd written a very brief letter and refused to let me have a copy of my medical records. I've already explained what help I need; a request to the tribunal to obtain a medical report or my records from my GP and a letter supporting my appeal and possibly stating that they frequently see ATOS assessments which are obviously inaccurate. I also hope they might be willing to intercede with the DWP to get the inaccurate medical disregarded, but at this point I was wondering how many times I'd have to ask before I got any help at all, never mind something that was such a stretch.

This is my reply:

Jaime Smith
to: "BUCKLEY, Shirley"


Dear Ms Buckley,

To be honest, I was hoping for some assistance in getting my GP to hand over my medical records as they refuse to provide the necessary evidence.

As it stands, they won't allow me to request my own records - I keep getting told someone will call me back tomorrow, which doesn't happen - and they have made it clear they have not intention of complying with the law on the charges or the timeframe.

They are treating me and my husabnd as nuisances when we try to sort this out.

The ICO won't get involved until I've made a subject access request and over forty days have passed. As I am not being permitted to make the request this will never happen.

My GP spent months promising he would help when my tribunal date came up. Now he says he cannot write the report required. The practice could help another way by allowing me timely copies of my records, but will not do so. I was hoping a request from an MP would be taken more seriously.

I even tried looking for a private medical opinion - the relevant specialist service (there's one and only one in the UK, with a clinic in Sheffield that's for children and one in London for adults) will not see me, either on the NHS or privately, without a referral, which my GP has also refused me.

My GP is (for the moment; I'm leaving for another practice as soon as possible) Dr XXXXXXX, at XXXXX Medical Centre, [address redacted]. my full name is Jaime Fay Smith, my date of birth is [redacted] and my national insurance number is [redacted]. The relevant Tribunals Service office is HM Courts and Tribunals Service, Social Security and Child Support Appeals, Prudential Buildings, 36 Dale Street, Liverpool, L2 5UZ. The reference number for my appeal is [redacted].

I would be very grateful if Mr Meacher could write to the Tribunal Service, explaining what has happened - although it appears I will be forced to withdraw my appeal, I would like it recorded that it isn't because I no longer dispute the decision, but because my word appears to be of no value and I do not have the time or money to obtain evidence they will accept overrides ATOS' opinion. I would also appreciate it if a letter could be written attempting to expedite my access to my medical records.

Thank you.

Jaime Smith.

In this email has made it as clear as I possibly could what I think it is that they can do to help me. I've given them the information they need (although this is redacted because after the abuse on twitter I am not giving my personal details away on the Internet, not that that's a good idea anyway). As someone who's so stressed they're unable to speak comprehensibly and contemplating suicide, I don't think I did too bad a job of being clear.

This is the reply she sent me:

BUCKLEY, Shirley
to: Jaime Smith


Dear Mrs Smith

I think it is unlikely that the Tribunal will just consider medical records anyway. They will want medical evidence from a professional saying that your condition has deteriorated. You also need to be aware that without any further medical evidence the Tribunal does have the power to remove all your DLA entitlement. This has occurred quite a lot recently, so you do need to consider that before and if you attend.

We cannot make an application for medical records anyway because there is a charge and there is a time frame allowed for them to be gathered. We would never deal with individual doctors but for queries regarding medical record requests we have always raised these with the former Primary Care Trust (PCT) that has now become the Clinical Commissioning Board. There is little point complaining about your GP not releasing them because It think this is done centrally – not sure that your GP would even be able to pass records on?

You say in one of your emails that a GP has provided a report but you disagree with it – is this correct? If so then I am not sure how the MP will force the GP to change it without any independent medical advice?

Can I just therefore clarify that you want the MP to write to the Tribunal to withdraw the appeal? If so then I would be careful about stating that your GP has not been very helpful as they may suspect the GP does not agree with your diagnosis regarding how you health has deteriorated. It would perhaps be better to say that you have suffered problems in accessing medical reports and you would therefore prefer to withdraw and make another claim at a later stage. Would you agree?

The MP could also write to the Clinical Commissioning Board to ask them to provide you with forms to access your medical records and once armed with these you could raise the issue again with your GP or any new GP. Would you agree?


Shirley Buckley

Oldham Constituency Office
Michael Meacher MP
11 Church Lane
Oldham OL1 3AN

Tel 0161 626 5779
Fax 0161 626 8572

Once again, not paying attention to what I've written, and totally missing the point as a result.

They can't give welfare benefits advice, but now she's telling me that she knows my medical records won't be any use. This contradicts the advice is given on my sole meeting with Oldham's Welfare Rights Officer, as well as all the advice of been given online by generous friends who've been through this themselves. They either can give advice or can't – which one is it?

GP practices are independent businesses, not owned or run by the commissioning NHS Trust. For the purposes of the Data Protection Act, they are the data controller for my records held with them. So they absolutely the right person to approach for access to my medical records – in my GP records will be references to the letters from all the consultants and other specialists I've seen, which will allow me to track down those records if necessary. I'm not sure whether the Clinical Commissioning Group would be able to make them comply with legislation; even that would have been too slow. What I do know is I'd been to PALS already, and they'd been no help at all, just reiterated my GPs position to me. That's not my idea of patient advocacy.

Unfortunately she seems to have very little idea about who holds medical records and what's supposed to happen when you request them, and hasn't bothered to find out before applying. A quick Google search would have provided the information.

I said that a GP employed by ATOS had provided a report on behalf of the DWP, and it was inaccurate in the extreme. I said that my own GP had provided me with a piece of paper containing my name, the fact that I was his patient, and an incomplete list of diagnoses, but had refused to provide a report. More evidence that she's really not paying much attention. I never asked my MP to try and change my GP report; I wanted help challenging it with DWP. I probably could have made that a bit clearer, but I really have no idea where she's getting some of these assumptions for it.

I wanted help; I tried suggesting different avenues, only to have them all shut down; I only wanted to withdraw the appeal if there was nothing else that could be done and there *was*, they just weren't willing to do it.

Writing to the CCB would have been little use; my GP was refusing to give over my records - I never got them - and it took them three months to give them to the new practice. CCB has no control over that. It'd help if she was correct in the facts she's basing this idea on.

By this time I was angry as well as afraid. It's not an attractive combination on me, I admit, especially when I feel cornered. I was still vaguely hoping they would help me, but I'd explained it all as clearly as I could - it's not a simple situation - several times by now, and it was really clear that the person answering my emails wasn't paying much attention and didn't know much about it. They didn't seem to care about the urgency, or the injustice of the situation; honestly they just seemed bored with me. I don't expect them to throw life and soul into it, but surely it's not too much to ask for someone to read the emails I wrote instead of skimming them.

Then I got this, from a new person:

Hannah Crossan-Smith
to: Jaime Smith


Dear Ms Smith

I understand that my colleague Shirley Buckley wrote to you asking how you would like Michael to assist you. As she is now out of the office for the day, I would be grateful if you could copy me into any reply to her and I will pass your comments on to Michael.

Best wishes

Hannah Crossan - Smith


I finally lost it. I felt totally abandoned, and voiceless, and the injustice of the DWP using a pack of lies passed off as a report to call me a liar was driving me insane. Everything I suggested was forgotten as they went off on a tangent with ridiculous assumptions based on nothing, or refused because they 'don't do that' What the hell do they do, then? I'll never find out, because I can't even get in the fucking office. I was terrified to continue and lose my DLA, terrified to withdraw my appeal and be branded a liar and disbelieved forever. The time was ticking away - if I was going to withdraw, I really needed to do it before the Tribunal, which meant posting the letter by Friday lunchtime-ish at the latest.

This was also the week Micheal Meacher was in the news everywhere over Colin Traynor, the man with epilespy from his - and my - constituency, who died of a massive seizure while waiting to appeal his 'fit for work' decision. I was desperately hoping that if he was willing to stand up for Colin Traynor, he would help me too. Not to be brutal about it, but Colin had gone where the Government could no longer hurt him. I'm still here.

Jaime Fay Smith
to: Hannah Crossan-Smith


Dear Ms Crossan-Smith,

To be honest, everything I've asked for help with is too much trouble/'we don't do that', from simply being able to access the office like any other constituent, to assisting me in exercising my legal right to copies of my medical records in the face of my GP practice's blatant disregard for the law.

No help accessing benefits advice - I did say yes to this, and then it immediately dropped out of consideration, so forget about it. I'm tired of being asked for information I've already given several times - it appears emailed are being quickly skimmed through at best. No help in explaining the situation to the Tribunals Service and finding out if they will acceptable any alternative source for the information I cannot get from my GP. Not help in accessing my records - just a daft claim that the CCG is the data controller displaying a complete absence of fact-checking.

As it appears my MP and his office are only interested in disabled constituents when they are dead and can thus generate publicity without the need for consideration or any work, it appears that I will have to continue struggling with this ludicrous system - which is Labour's legacy - on my own. I'm now at a complete loss as to what 'my' MP actually does for his handsome salary - as he's not use to me or anyone else I know of who has asked him for help.

Rest assured that I will be casting my vote elsewhere as soon as I have the opportunity to do so.

It wasn't too nice, no - but there again, I was being screwed over from all sides and had hoped for help and met with apathy and indifference, and, to be honest, a subtext of 'you're faking it, aren't you?' Wouldn't you be angry? Finding out that the people paid very very well to represent you couldn't even be bothered to read your emails? That they won't offer any help, even if you tell them exactly what you need? If you wouldn't be angry at that - you're a mug, and people will be using you as a doormat for the rest of your life.

Hannah Crossan-Smith
to: Jaime Smith


Dear Ms Smith

I am sorry that you feel this way. As far as I am aware, Shirley said that Michael would be willing to write to both the Tribunals Service and the Clinical Commissioning Board on your behalf.

As Shirley explained, we are not qualified to give benefits advice and it would therefore be irresponsible to do so. This has nothing to do with Michael not wanting to help his constituents, he is currently dealing with many cases related to disability benefits and will try his best to help people who come to him. It is also irrelevant who you intend to vote for, Michael assists all constituents regardless of their voting intentions.

Michael has offered to assist you and this offer still stands. Let me know if you would like him to do so.

Best wishes

Hannah Crossan - Smith


Oldham Constituency Office
Michael Meacher MP
11 Church Lane
Oldham OL1 3AN

Tel 0161 626 5779
Fax 0161 626 8572

At this point, I admit it, I gave up.

I wanted to go to the office, go inside, show my MP the paperwork and all the errors/lies in it. I wanted to show him the completely unfair burden the Tribunal had put on me in terms of getting further evidence. And I wanted him to help me get a just outcome. I wanted him to take my story, along with all the others, back to his party and to Parliament, and do his job. To represent me and my interests, as he is supposed to be my voice in the system.

Instead, I had to try and steer through the complexities of disabilities and DLA someone who knew nothing about them, and cared less. Who couldn't even be bothered to read my emails, who always had a reason (if you can call 'we don't do that' a reason) why what would help was not possible and a totally ineffective idea to put in its place. Who 'doesn't give welfare benefit advice' but tells me a Tribunal won't accept excerpts from my medical records. Normally, I'd have hung onto my temper like grim death, and gone through all the pointless routes as a preliminary to getting help - but I didn't have time. And she didn't care. All the remarks about 'well, if your GP won't support you...' implying that it's because I'm lying, malingering, making it up.

She has no idea - healthy people never do - of what the NHS is like if you've anything chronic. The amount of abuse, disbelief, mistreatment, delayed treatment, refusal to treat, refusal to refer, refusal to prescribe - especially painkillers. The accusations that you're mentally ill, and there is no physical problem - being in severe pain for a decade and a half and being disbelieved all that time, wouldn't you be depressed, angry and just fucking hostile? But no, there can't be a problem - I MUST BE LYING. That's *always* the answer.

So, Micheal Meacher - enjoy your visit to Sue Marsh. You and your staff are neither use nor bloody ornament here. You don't represent me, you won't even speak to me. I'm just a nuisance til it's election time again.

I appreciate that you're speaking out about the Government's persecution of disabled people, I really do. But it would be nice if you extended that same concern to your own people - the ones who elected you to look after them and their interests? You may have heard the saying 'Charity begins at home'. Well, so do good intentions - and you'd be a lot more convincing if you weren't inaccessible - in a lot of ways - to your disabled constituents.

PS - Comments will be modded before appearing, abusive ones will be used to laugh at your poor writing skills.

Sunday, 16 December 2012


Oh, FFS.

Can't get an answer from PCT about whether I can have funding to see Prof G in London. Can't appeal decision cos they won't *make* a sodding decision. Hate bureacracy.

Can't get anyone at local Rheum service to listen to me at all - if you don't have inflammatory arthritis or an autoimmune condition, you're too boring to treat, apparently.

Can't get a referral to someone to see about getting ring splints/some better wrist splints. Apparently rheumy shld sort it but see above re: complete disinterest.

Why is it so hard to make medical 'professionals' understand that sometimes, things won't kill you but nonetheless cannot, under any circumstances, wait an undefined period of time from 'four months if you're lucky' to 'forever. many, many years'. like chronic pain treatment, splints, adaptations, equipment, specialist referrals... ugh.

Currently chafing at the fact that there is information, advice, management, even treatment out there - but I am not allowed to access it because somehow I'm less 'worthy' of the effort than if I had a popular disease - one with big-charity support, like cancer, for example. If I had suspected cancer, I'd have to been seen within two weeks. Get something that won't kill you, but will just make you live out the forty or fifty years left of your natural lifespan *wishing* it did, and you're not important at all.

This is really upsetting me. I can hardly bear to admit this to myself, but I would like to discuss and consider the possibility of having a child with my husband.

However, I can't even bear to say the words, because from what I've read about EDS - and the fact that a few of my symptoms/history factors may well point to at least some vascular involvement, instead of 'pure' hypermobility type - childbirth could range from 'needs close medical supervision' to 'suicide: the long route'. It could leave me too damaged to care for my child. It could kill them, or me, or both of us. I need to at least have some idea of the possibilities and the balance of probabilities. I need to talk to someone who knows a lot about this, who I can trust, and get good, solid, reliable information and advice - and who I can trust to care for us properly if I did try for a child.

This should be a wonderful possibility. I should be really gleefully excited. Instead, I'm too apprehensive to even think about it loudly. All because my local NHS doesn't think I'm worth it. Because of money.

They'll give free nicotine patches to people who have been able to afford 20 cigarettes a day for years. IVF. Replace faulty breast implants that people could afford thousands to have fitted to begin with. Interpreters for people who've never bothered to learn the language, because someone else pays the translator. There are probably countless more examples that I'm too tired and angry and sick at heart to think of.

But there isn't any money for me to have even some chance at minimal quality of life for the next fifty years, let alone dream of having a child.

Thursday, 22 November 2012

DLA decision

So, I got my DLA renewal decision in the post today.

High rate mobility, low rate care, for two years.

Not best pleased. I was scared they were going to take it away entirely because I'd started working, but my care needs have increased massively. LRC is seriously not appropriate any more and hasn't been for over a year.

I did apply for a supersession, but they made a complete fuck-up of it. Went to appeal, even with disastrous ATOS report, cos GP had promised to support me when time came to write letters for tribunal. Long story short (because I'm still too traumatised to go through it, although I'll try and document it some time) he refused and I had to withdraw my appeal, as the tribunal chair who hated me from the start, told me flat-out that I would lose my HRM and therefore my car if I continued.

By the time my supersession got to appeal, I was due a renewal of my award anyway, which is what I just got the decision on.

They've contradicted themselves so much. I am virtually unable to walk, but I have no problem getting up and down stairs, in and out of a chair, or in and out of bed, according to them.

I am at risk getting in and out of the bath or shower and using a bath or shower, they say. Yet they also say I don't need help to bathe or shower. I mean, WTF? This is elementary logic. It isn't difficult. Even someone as hard of thinking as a DWP decision maker should realise they're talking gibberish.

They used my claim form, and a (completely false) ATOS medical from APRIL - over six months ago - and no other evidence. I wrote on my form that my GP knew most about my condition and treatment and would get the best and most accurate evidence from him.

Interestingly, the mobility decision says I can walk 75m, albeit slowly and in a poor manner. I really can't remember the last time I walked 75m without falling/stopping/experienceing excruciating pain.

Under 'preparing a cooked meal', it says I need help to carry and lift safely. Yet I don't need help several times throughout the day. Er... how am I supposed to eat/drink/*do* anything?

Under day attention, they agreed I need help to wash and dry myself, dress and undress, eat and drink, and communicate. So I'm not supposed to do any of these things during the day?! No eating, drinking or communicating unless it's getting up or going to bed time? FUCK THAT. That's before you get to the issues with lifting and carrying and the consequent spilling and changing clothes. And the dressing and undressing - including enough to go to the loo and clean myself up after - I'm not supposed to do any of that in the daytime?!?!

They have said that during the day I don't need help to get in and out of bed or a chair - I nap/rest in the day a lot so this is a daytime activity for me. I need to undress at least partially to be comfortable lying down. I can't walk, but I can get up and down perfectly easily?! I need help dressing and undressing but can put myself to bed - am I supposed to sleep in my clothes?! I'm already worried about pressure injuries when I spend any time in one position - jeans with rivets, belt buckles, hefty seams are going to make that *much* worse - the pain as well as the risk of pressure injuries. I'm not slobbing my life away in PJs, either.

Don't need help to use a bath or shower - but am at risk 'getting in and out of the bath or shower and taking a bath or shower. Logic fail.

I am virtually unable to walk. My house is totally unsuitable for me to use my wheelchair indoors - it's upstairs, for a start. Yet I need no help moving about indoors? WTF?

I need no help managing my treatment or medication. That's be why I can't do my physio without falling and getting stuck in pain on the floor, or remember my meds without Dave reminding me. Why I can't open my oramorph, regardless of whether it's a childproof or normal cap. Why I can't take my liquid meds with a spoon without pouring it down my cleavage - resulting in undressing/washing/dressing needs.

I am virtually unable to walk, but not at risk of falling. Huh? The falling is part of the reason I am virtually unable to walk!! and it's exactly the same on a level indoor surface as it is on a level outdoor one. More logic fail.

I'm not at risk of harming myself. That'd be why I struggled not to attempt suicide when they forced me to take it all to an appeal, and I couldn't get any help at all and had to withdraw because I was threatened by the tribunal chair. Why I replaced cutting myself - which I'd not done for over a year - with biting and scratching myself so my husband didn't catch on.

I'm not at risk of danger from blackouts or dizzy spells, or falls, they tell me. Apparently they've never heard of POTS in EDS patients. I also have low blood pressure normally, as well as severely impaired proprioception - not a great recipie for staying balanced, non-head-spinny and upright. That's before you get to the side effects of my meds.

Amitriptyline makes me sleepy, blurs my vision (which sucks anyway) and makes me dizzy and light headed, and occasionally palpitations.

Sertraline also has side effects of tiredness, dizziness, shakiness, palpitations, and muscle pain.

Morphine sulphate SR, and liquid morphine sulphate suspension, have side effects of drowsiness, especially getting up or down (but I don't need help in or out of a bed or chair or moving around indoors!!), vision problems, and palpitations.

Add in fragile connective tissue, hyperalgesia and allodynia from fibro and EDS, and easily subluxed and dislocated joints - clearly, I *am* at risk of bloody falls. They. Make. NO. Sense.

The reasoning for 'during the night' is the usual 'at your own speed, you can safely..'
I'm often up during the night. I'm also subject to all the problems I have during the day - I need drinks, sometimes food, I need the toilet, I may need to wash and change if I've spilled something/not managed to get to the loo in time. I need medication, which I cannot open bottles of/get out of packets - especially as my fingers tend to dislocate themselves if I get any length of time asleep.

Sleep comfortably? Are they kidding me? I don't even remember what that feels like. I'm only vaguely aware that it's still possible for people who aren't me. Turn over, adjust bedclothes, change position - inability to do these would be part of the reason I *can't* sleep comfortably, except they say I don't need help with them.

I'm really pissed off, in a depressed kind of way, about this. I think if it had to be an appeal again I probably would kill myself this time, I came uncomfortably close last time, and I really think the whole experience has just added to the PTSD I already have from various horrors in my past.

And yet, I need the help. I need the money, too, rather badly, but at this point they've screwed me up so much I care more about getting them to admit that they know my care needs are much greater. I think I'm going to start with asking for an appeal just to get the reconsideration if that makes sense, and send more evidence (newly arrived, so didn't make it into the DLA application pack). Fingers crossed. I hate them.

There's a story from a former DWP worker who ended up on sickness benefits floating round at the mo. It reads, to me, very much like the 'but I'm not a scrote!' special pleading you get from Daily Mail readers who've found out they're not immune after all. Plus, I'm probably going to be called all the names under the sun for this but - serves you fucking well right. Eat karma, bitch. He spent many, many years screwing people over, treating them - and making them feel like - subhumans. And feeling absolutely no empathy, remorse, or moral qualms of any kind, as he openly admits. Why the hell should I care?! He thinks he's a victim now? thinks he should be treated better? I think he's getting exactly what he gave out for many years, and that what goes around, comes around.

Argh. DLA/DWP make me absolutely fucking crazy, there's just no need for them. Petty, soulless, morally bankrupt little-tin-god tyrants. No sympathy for anyone who took that job voluntarily, none at all. I cannot take this fucking stress again! I cannot let them fucking lie about me to everyone!?

Monday, 19 November 2012

Spending time with my Dad, and pain vs fatigue

I love my Dad to bits. He and I fought like hell when I was a teenager - the usual story of him wanting me to stay his little girl and me wanting to be acknowledged as an adult, plus a side of him being hugely stressed out and me going crazy.

These days, I feel like I've got my Dad back. We went Christmas shopping for Mom today - had good fun and a laugh, then came back to mine, and put the world to rights - usual mix of politics, philosophy and general bitching about idiocy.

I love the fact that my Dad (and my Mom, for that matter) are people whose company I enjoy and who I like to spend time with, as well as being related.

Again, I'm reflecting on the fact of just how incredibly lucky I really am. I love my family, and they love me. When I was in the psych ward and fully believed they'd be absolutely justified in abandoning me, they were there every step of the way. No panic, no 'why are you doing this to me?' - just 'when can we come and see you and what do you want us to bring for you?'. Amazing. Lots of people believe their family love them and would support them no matter what - I have had the amazing privilege of seeing my family prove it to me. I *know* that it's true.

Today has been an odd one. Lots more pain than usual, but a fair bit less fatigue, as well. This actually works out a better deal for me - I actually have some semi-effective pain medication now, so I can always kill some of the pain with drugs when ignoring it and bullying through it has reached its limits. On the other hand, I have absolutely no effective techniques for managing fatigue. Zero, zip, zilch, nada, niet, nothing. Sleeping doesn't help. Resting doesn't help, pacing doesn't help, there's no medication I can take for it - if I run out of spoons, or wake up with them in short supply, then there's nothing I can do about it whatsoever. I just have to give up on whatever plans I had and use my precious spoons for things like breathing and eating.

So, yeah, give me pain any day. Although, I have to admit, both waking up with the majority of my fingers dislocating, and my persistently subluxated shoulder, are getting on my nerves. I think it may be Oramorph o'clock again...!

Oh, and this month's supply of lactulose solution has turned up in a bottle that makes it look like floor cleaner, much to my amusement!!

Sunday, 18 November 2012

On therapy and life skills

Today I have mostly been marvelling at how much I've learned about coping techniques, mindfulness, and distress tolerance. When they told me therapy would be a long process, I didn't realise that they meant about fifteen years...

I used to be vehemently against therapy. I was totally wedded to a purely biochemical-dysfunction model. In a way, I still am.

Therapy didn't 'cure' my mental health problems. It had absolutely no effect on them at all. Therapy does not fix people, or their mental health problems.

What it does do, however, is teach you how to live *through* your mental illness. It teaches you the skills to live your life, whether or not your mental health ever improves or can be controlled by medication. Distress tolerance, insight, emotional expression, communication skills, all sorts of things like that. Skills that mean you don't need to get *rid* of your illness, problems, differences, idiosyncracies, whatever you want to call them, however you personally see them.

It's also helped a lot in dealing with the progressive disability caused by my physical condition or conditions (still not got a definitive answer). Long term illness and disability is commonly accepted to increase the likelihood of someone experiencing depression. The techniques I've learned for coping with, working around and living through depression work just as well for depression caused by my physical limitations and the disabling barriers imposed on me by society, as for depression caused by a chemical imbalance, crappy childhood, whatever you attribute it to. Whatever the cause, for me at least, as the effects have been the same - so have the methods for dealing with it worked equally well regardless of what caused the depressive episode.

Therapy has been more valuable to me than I ever expected it to be. Especially given I went into it out of sheer desperation, having exhausted other options and deeply wary, cynical and unsure. However, I have to say at this point, that I consider 'therapy' to be distinct from 'positive thinking', 'behavioural modification', 'attitude changes' and all the other bullshit, rubbish, and unscientific victim-blaming crap.

I consider cognitive behavioural therapy and the biopsychosocial model of illness to be the greatest scams in medicine in recent history. The idea that negative expectations and thinking badly about things is the reason that illness - mental or physical - has a negative effect on a person's life is ridiculous. The negative aspects are real, quantifiable problems, with a negative effect on quality of life - they're not just hysterical psychological constructs invented, consciously or unconsciously, to allow someone to avoid being a responsible adult human being.

Teaching someone how to tolerate and deal with distress is helpful. It increases their ability to cope independently, their control and autonomy over their self and their life, and their chance at a decent quality of life.

CBT/BPS on the other hand, just tells the person they are to blame - that they are responsible for the fact that they are defective. They have been so *wrong* that they've made themselves ill. How does that help? It's about as useful for depression as 'snap out of it', in my opinion. It almost *is* 'snap out of it' - it says, you're doing it wrong, just stop doing these stupid things and you'll be fine. I cannot see how that improves someone's quality of life - how it gives them more control, more autonomy, more ability to cope in a way that improves their life.

I am so grateful for the skills I learned in therapy. I lucked out completely - I had a great CPN who referred me to a scarily intelligent, highly qualified clinical psychologist who was amazingly skilled. I will be forever grateful to the CPN and clinical psychologist - I honestly believe I would be long dead by now without their help. It was not easy - hell's bells, sometimes it seemed completely impossible, beyond even imagining, much less achieving. But those two smart, skilled, compassionate women cared enough to kick my arse when necessary for my own good, as well as coddling me when that was what I needed - and to put up with the tantrums and avoidance meant to drive them away as I tried to protect myself.

And, as I said, I found these skills even more useful when my physical health took a nosedive. Again, I think I would have killed myself long before now - especially during the period I was being denied any effective analgesia and accused of malingering, which I've found out since is actually a normal experience for anyone with mental health issues in their records who then develops a physical illness.

I've been severely depressed since I was twelve or so. I made my first suicide attempt - a very poor attempt, but nonetheless - at thirteen. Had my first psychotic episode at about seventeen. Hospitalised for a suicide attempt for the first time at twenty one. Admitted voluntarily to a psych ward at twenty four. It's not a good history, and most people with one like it can be expected to be in and out of depression, psychosis and hospitals for the rest of their life, with limited periods of stability.

I am incredibly lucky, and I know it. I've had a fairly minor episode of depression recently, but before that I had over a year of more or less normal mood - the longest period I've gone in my memory without feeling incredibly awful. I am so grateful for the happiness I've experienced - I've been _able_ to experience - over the last couple of years.

In short: therapy is brutal, gruelling, unpleasant and takes years if not decades to show any results. And it's worth it. Every last painful second.

Friday, 16 November 2012

Polling Station Fail

So, after reading halfagiraffe's excellent post about access to democracy yesterday, I sort of exploded all over her comments section. Er, sorry, Becca....

Here's what I wrote about my experience of trying to vote in the PCC elections - the first election since I moved here, and thus my first visit to this polling station.
I've had a similar experience today. Perfectly accessible town hall and library, with parking, very easy to find. Polling station small 'parish community centre' for local church hidden down tiny cul de sac - clearly God loves everyone, as long as they can walk.

I tried four different routes - there isn't a wheelie accessible route. In the end I threw my chair off two six-inch-plus kerbs (only one of which I knew about beforehand), killed half a dozen inconsiderately abandoned wheelie bins, got stuck in a main road along the road-side of parked cars three, four? times, was foiled by one set of stairs and then finally found the stupid bloody place.

Only, the pedestrian entrance was in the wall, with a railing panel at the kerb about 2' away - ie, not room to turn my chair and get in. I had to go in via the car entrance, nearly got run over twice by idiots, had to go over four of those small sharp yellow and black speed bumps and glaring cynically at the wheelchair symbol on the entrance sign, wheeled around the building.

Found the entrance - two big steps, of course and a too short, and therefore too steep, wobbly temporary ramp, up to narrow, only one side open double doors. It was truly frightening. I only attempted it because I was mostly frozen after lengthy attempts to find a wheelchair accessible route and really needed to get indoors.

Once inside, weird twisty route, a random row of chairs totally blocking the centre of the room except for a gap barely as wide as my chair which six totally disinterested polling staff gawped at me negotiating.

I pointed out polling stations should be accessible to everyone and got no response. I'd have called it a blank look except they'd all been gaping since I appeared. No wheelie-level booth, so no privacy. No pen. No surface to lean on. And the ballot box on a table so I couldn't reach to put my vote in. More gawping, no help.

Left, battled back home, cursing vehemently at pretty much everything including a church owned wheelie bin left over the only drop kerb in sight - thanks, tolerant, loving, inclusive religious types - and almost crying with fear that I was being forced to trash my £2k powerchair that I cannot manage without and have absolutely no way of replacing.

Democracy, my ass. Apparently what makes one a citizen is functioning legs.

There was a fair amount of outrage on Twitter, and a supportive comment on Becca's blog, and I began to feel that at least it wasn't just me that found this unacceptable. I forgot to mention that the building wasn't actually visible from the road (as a wheelchair user, anyway. Dave could see it, but Dave is better than six feet tall). The only polling station signs were on the pedestrian gate (the one that had one of those 'you can't bring a bicycle through here' zigzag things) and on the car park gate, which faced the church at the dead end of that street.

Then there was a comment on Becca's blog which seemed basically to say that anyone who finds something inaccessible should be causing a massive fuss and demanding it be fixed, and there are so many inaccessible places because those disabled by lack of access don't protest enough.

I didn't like this. At all. I have to admit, I thought some very unkind thoughts about the writer of this comment - I'm probably a bit oversensitive, because I got a lot of these unthinking, glib 'it's easy to fix! just do <totally obvious thing you tried to start with> and it'll be fine!' when I was trying to find help with my DLA appeal via Twitter, and being bombarded with them at an already insanity-inducingly stressful time, I started telling people not to be such smug bastards and blocking them.

I restrained myself and replied. I think I did OK - I tried to be respectful and reasonable whilst still being myself and expressing the way it made me feel and the assumptions that seemed to me to underlying that kind of smug dismissal of someone else's serious problem as a trivial matter. I didn't swear, which given the kind of rage overreaction I have to things like this, is a minor but significant acheivement in itself :D

This is my reply:
David, thank you for your outrage. Helps to know that other people find this as disgusting as I do.

Witsend.... I recently tried to see my MP about something else. His office is down a cobbled lane, up two *huge* steps and there's no ramp. All that happened when I complained was a huge list of defensive comments about how it's 'too expensive' and a listed building. I tried to be constructive, and suggested two things - a doorbell, and a ramp. One about ten quid, the other about £150. Could well be expensed - legitimately, unlike some other things - and was told it's a nuisance and too difficult. MPs care less than Joe Public, and it's hard to tell if he cares at all.

Loudly protesting my rights does nothing but get me assaulted by 'security' staff. It really really is not as simple as 'make a loud noise', and we have lives to live in the midst of all this crap the not-yet-disableds pile into our lives with merry abandon. That doesn't mean I don't do what I can about the discrimination I encounter, just that I pick my battles very carefully.

I've got to say, I've had a lot of people tell me lately 'oh, you should make a fuss, it's against the law, just shout louder', etc, and I actually have to fight myself not to reply with cursing and venom. It's overly simplistic and doesn't take into account that I have less energy to spend, each activity costs me more energy and I have significantly more activities to do than a not-yet-disabled person just to survive.

It glosses over the reality that laws not enforced are meaningless, and any law that requires a member of a marginalised group to obtain definite proof and a lawyer to enforce, won't be enforced. It ignores that one quarter hour bus ride can throw up enough potential fights for my rights to keep me busy for about three years. That is not hyperbole - it really isn't. Local Govt Ombudsman about pavements and drop kerbs - 18months, if you're lucky. Bus company about drivers who grab my chair and heave me about - endless, basically, as is a complaint that the passageway past the driver is too narrow and too sharp a turn - they're not going to replace all their brand-new buses, not for anything, and disability is very low priority. Assault complaints about members of the public who toss their kids into my lap when they're tired of holding them - this has happened - again, endless, even when resulting in dislocated hip and subluxed knee. This is before the bus even sets off.

I'm not trying to be unkind, but please don't assume that a glib slogan is in any way relevant to the complexity and overwhelming demands life as a disabled person is for me. That kind of minimising puts the blame on me - if I shouted louder, tried harder, fought longer, it'd all go away.

I think there are a few underlying inferences that are quite startling.

The first is, of course, that it is the responsibility of disabled people - individually as they encounter barriers and collectively over time - to solve access problems. Just think about it for a moment. That seems to me like telling black slaves in the American Deep South to just stop acting so subservient and sort their own problems out. This isn't a problem with me, the disabled individual - this is a problem with society, from its physical structures, to its social codes and expectations, and its implicit and explicit attitudes about the equality, humanity and worth of human beings who are disabled. It would be unthinkable for older, rich white non-disabled men to be on the receiving end of attitudes, behaviours, policies, social conventions which impacted them this way. It is literally incomprehensible, and that is because society automatically regards this group as important, regardless of personal actions or contributions to the whole.

That's the second big problem. The idea that disabled people are of no value. That it's really OK to fail to consider us - to deliberately exclude us - because we're not worth it, like real people are. I literally cannot find the words to express my horror at this. This concept of disabled people as 'other' is, in my opinion, responsible for every last instance of discrimination, hate crime, or inaccessibility that happens. No-one would do this to themselves - it's done because we are _not_ them, and they assume they will never be one of us. They're wrong, but sadly if something happens to correct their thinking on this, it's by definition too late - because by then they've become 'other', just like us.

The third one is the one that makes me angry, and feels like a personal slur. It's the assumption that I am, of course, too stupid and incapable to have thought of this very simple and obvious action which will *of course* solve my problem entirely. That I have made no attempt to think about the situation - that I am incapable of thinking about it - and cannot possibly have made any attempt to resolve it.

I cannot be alone in finding this both far too common and highly insulting.

And, sadly, impossible to communicate with any accuracy to the not-yet-disabled.

Anyway, I will be complaining to my local council - especially as the local library and Town Hall are both very accessible, available, easy to locate and have ample parking, and provide a vastly better alternative. I will also be taking up my ongoing argument with them over the state of the pavements and drop kerbs, and the fact that disabled access is consistently at the very bottom of the priority list, no matter what activity of the Council is under consideration (I'd like to point out that I don't consider Social Services to be part of the Council - and they have been utterly brilliant; friendly, social-model-aware, engaging and empowering, as well as willing and eager to listen to suggestions and complaints).

I'll let you know when (if) I hear that the tigers are finished with my letter. *sob*.