46/52

Much as I love the green and blue jacket Jamie has been wearing for the last couple of months, the clocks have changed, the days are shortening, and now there's every possibility of us being outside at dusk or even when it is properly dark.

Combine that with Jamie's growth, and his ever-increasing mobility, and it was time for him to get more visible.



So, one dazzlingly bright orange jacket in size 12-18 months. What surprised me is how much more relaxed I feel even in the middle of the day, having him this visible.

I am still trying to work out the correct combinations of outerwear: the full body waterproof (but not warm/lined) splash suit, the full body warm (but not waterproof) snowsuit with button-on mittens and soft bootees, or the wellies, or the properly fitting how expensive?!?!? shoes, and when is it time to put tights/leggings under the thick fleecy trousers if he's not wearing the snowsuit and... at this rate I'll need a team of Sherpas to carry Jamie's wardrobe options to go places.

Wheelchairs

As most people who know me are aware, I currently have Alber E-Motion M15 power assisted wheels and I have loved them for every minute of the five years I've had them.

I was incredibly fortunate to get help from Access To Work in being assessed for and part-funding them, and even more fortunate that being self-employed and working from home I was permitted to use them as much as I needed to. They're not categorised as being for my personal/social/leisure use as the assessment was done purely with my work needs in mind, but at the same time, no one expected me to remain housebound/struggle to walk/submit to being pushed/use a badly-fitting generic non-powered wheelchair/etc when I have a properly-assessed-for power-assisted fitted wheelchair that is ideal for my needs sitting right there in my house.

Predictably enough, with pregnancy my wheelchair needs are changing. My wheelchair as fitted five years ago is becoming increasingly uncomfortable to sit in, and my stomach muscles are no longer strong enough to allow me a proper push, especially going uphill, and the increasing size of the bump means I can't lean forwards at all. Even on ideal terrain, such as the absolutely flat smooth surfaces in my local supermarket, I still have to stop and lean back when the baby decides to have an energetic wiggle.

I'm only going to get bigger for the next three months, and my stomach muscles are going to keep loosening and stretching, and then once the baby is born I want to wear a sling rather than trying to negotiate fixing a pram to a wheelchair (or worse, having a PA pushing my baby in a pram alongside parents with their babies in prams while I am baby-less, self-propelling and trying to pretend that I'm the one of us who belongs in the group of parents walking around the park with their babies), not to mention that it's going to become even more important to conserve my energy so that I can meet the baby's needs... I'm going to need a fully-powered wheelchair.

We knew this would be the case before we started trying to conceive, and as such we saved up to be able to purchase a fully powered wheelchair when the time came. My needs aren't especially high, my body is not particularly fragile or unusually proportioned, and of course I won't be sitting in the chair all day every day. But, with the baby in the mix, we don't want to buy something random and second-hand - we were always clear that we'd want it from a reputable source, covered by warranty, and with servicing available locally. The price range we were expecting was between £2,000 and £6,000.

One problem is that the unexpected £5,000 we already have to pay for the stairlift, plus a rent rise and a couple of other unexpected factors that aren't disability or baby related, has left us with rather a different financial picture than we'd imagined.

A bigger problem, though, is that I can't get an assessment - and am loath to just trundle into a random mobility supplies shop and ask a salesperson to assess me, in case what they decide I "need" turns out suspiciously close to what they will make the most commission on or are desperately trying to shift out of their stockroom.

The NHS Wheelchair Services position is that powered wheelchairs are only prescribed for people who need a wheelchair to move around their own home. This is obviously not the case for me. They also can't prescribe a self-propel wheelchair to someone who can't self-propel, and attendant wheelchairs are somewhat dependent on *having* an attendant.

This issue couldn't be tackled ahead of pregnancy because resources are quite in-demand enough for situations which already exist, without being done pre-emptively for situations which only "might" occur such as conception of a baby. But my GP and midwife have, since week 10 of this pregnancy, tried every route they can think of, up to and including obtaining the Wheelchair Services referral form and then writing all over it that while we know WS won't fund or prescribe a powered chair for me, maybe they could just *see* me and *advise* on what sort of chair I should be privately purchasing... nothing. The most useful response we've had is "well, whoever assessed for her last chair can assess her again," except of course that was Access To Work and even if they hadn't been hideously defunded in the last five years, my non-work needs for late pregnancy and early parenthood are not their remit.

The Social Services OT also tried, but again, all roads lead back to NHS Wheelchair Services, who refuse to so much as see me.

Following a Twitter conversation with a friend, Scope tweeted to me that I could try the Mobility Trust. I've written to them, but have not yet heard back and I believe from the information on their website that they are more about helping people who already *have* assessments out of the funding hole, rather than helping people get assessed in the first place. Steve and I know that despite our current financial upheaval and zero assets, we're still relatively privileged in that we have an above-benefits-level income and zero debt, and as such probably don't come under the charity umbrella.

The best result I've been able to obtain is that one morning, after an hour or so chain-phoning this or that organisation, explaining the predicament, and being told "not our remit, you might want to try (person) at (organisation), their number is..." I actually got to *speak* to someone at the local Wheelchair Services. They still refused to help with an assessment, but they did give me the name of the supplier they usually use, and told me that they regarded that supplier as being a trustworthy and established local business who would assess my needs without a rampantly profiteering head on. It didn't quite work out that way. I made an appointment to go in and discuss my needs and was proudly handed a couple of PDF printouts from manufacturer's web pages, for incredibly expensive made-to-fit support-everything bespoke powerchairs. The salesman seemed to lose a bit of interest when I said that neither my needs nor my budget were quite that high, although he did offer to get one or two powerchairs in and then call me so that I could test them. This is not the same as discussing my needs and preferences and figuring out which of the chairs on the market might best suit me and then getting *that* powerchair in for me to try. It's fine as a fall-back option, but this is an investment of thousands of pounds of our own money, we'd really quite like a few more options and a little bit of guidance!

Part 1 Part 2

Not 24 weeks

I don't know if anyone was watching closely enough to notice, but there has been no 24 week update, and there is also no 24 week picture, and now I am just over 27 weeks pregnant.

This is largely because there's been just too much other stuff to deal with. All three of us are healthy (usual parameters), no emergencies, just... Stuff.

The first bit of the Stuff is Social Services.

This was very much a planned baby, and part of the planning was getting input from Social Services before trying to conceive. I'm pleased to say that we got a good, positive response. We were reassured that we had an absolute right to a family life, and that Social Services would support us to meet not just basic survival needs, but also to fulfil my role as a parent. The child is not automatically considered "at risk" and if I struggled to meet the child's needs then before Child Social Services would even consider getting involved, Adult Social Services would need to have done everything possible to enable me to look after the child myself. Specifically I was told that instead of my case remaining effectively "closed" (as it is while a person is stable and their needs are being met by their existing care package), once I informed them of a pregnancy I would be on the active caseload of a named Social Worker, they would review me every three months during pregnancy and the first year of the baby's life, or more frequently if necessary, and as such my care package could be altered according to the rapidly changing circumstances.

That filled us with confidence and we went ahead. Spool forward to Spring 2015. Eight weeks pregnant, I met "my" social worker, and we got on well. She was every bit as positive. We decided that she would line up all the various referrals to Occupational Therapy and Independent Living and so on, but given my history we would wait until my 12-week scan before forging ahead, to save on upsetting encounters if anything went wrong.

So, after my 12-week (actually 13 and a bit) scan, I phoned her office... was told she was off sick but would be in touch when she got back the next week. Nothing happened. Phoned again at 17 weeks... was told she was off sick but would be back the next week. Nothing happened. Phoned again at 19 weeks... was told she was off sick and they didn't know when she would be back. I pointed out that the baby was not going to wait indefinitely until "my" social worker was back and asked if I could be transferred to someone else's caseload. The answer was no, but that a Duty Social Worker would call me back.

(Duty Social Workers are to named social workers as duty GPs are to named GPs. They're fully qualified, and authorised to open and read confidential client files and take necessary action. But they're supposed to deal with that day's emergencies and situations requiring an immediate response, not ongoing or future care requiring familiarity with the case or time for research about a specialist situation - and they prioritise their time, so if you *can* wait until tomorrow, the chances are you will.)

Nothing happened. At 21 weeks, I phoned again and explained that pregnancy is only supposed to last 40 weeks, so the baby was more than half-way here, I was having increasing difficulty doing things and that while I appreciated I wasn't an absolute emergency, I really quite urgently needed to hear from a social worker if we were going to avoid me AND the baby becoming one.

Finally, two days after that, a Duty Social Worker called me. He'd opened my file; he'd seen that "my" social worker had been intending to start off a number of referrals as soon as I'd had my 12-week scan but that she'd gone off sick before this could happen; he agreed to authorise and send off those referrals, marked as Urgent in an effort to catch up to where we should be. However, "my" social worker was expected back within a couple of weeks, so they couldn't transfer me to anyone else's caseload or conduct a reassessment.

I was really pleased that things were moving at last, but of course that was when the challenges really started. Because I had no social worker to oversee things or fight my corner, I had to try and comprehend the whole system myself. First getting past gatekeepers, then being referred on to yet more people or organisations, and trying to keep track and make sense of who everyone is, when I see them, what their remits are... I'll go into more detail in another post.

At 22 weeks, someone from Independent Living saw me and agreed to formally refer me to be reassessed by a social worker. At 23 weeks, she phoned me back and told me that the referral had been postponed because they wouldn't transfer me to another caseload, because "my" social worker was off sick but would be back in two weeks. Does this sound familiar? Can you guess what happened? That's right, two weeks later (25 weeks) I was told that "my" social worker was still off sick! But, obviously, they couldn't transfer me to someone else's caseload, because she would likely be back in two weeks!

*headdesk* *headdesk* *headdesk*

Thankfully by this point my list of "two weeks" was long enough that it was conceded I could be reassessed the following week by a Duty Social Worker for my third trimester needs. Her findings would be submitted to a panel who would decide what help I would get.

I honestly felt sorry for that Duty Social Worker. I think like many social workers she went into the profession wanting to make things better for people, but... she was visibly stressed and very disillusioned. I had prepared notes ahead of the meeting with an outline of the sort of bare-minimum support I felt I would need. The moment that has stayed with me is the moment when she sighed and said "I don't think you'll get this. Do you really want me to ask?"

Outwardly I replied that yes, I wanted her to ask, because if she didn't ask, then I definitely wouldn't get it!

Inwardly I curled up in a terrified ball. At 26 weeks, the baby was already wiggling so much that the movements could be felt from the outside, and if anything went wrong, there would be a chance of both of us surviving it. There is no turning back. I'd only started on this journey after getting reassurance that it would be okay - I thought I had been as responsible as possible in ensuring that if I ever did have a child I would be able to provide a decent level of parenting. And now here was a social worker who, in contrast to the positivity of those I saw pre-conception and at 8 weeks, was so doubtful about the likelihood of me getting support that she didn't even want to ask the panel for it.

She also let us know that it would be at least a week before she got the chance to type up the reassessment. In an effort to do something positive, I offered to send her my notes to save her some typing time. Then, before sending them, I spent a couple of days going through them, being rather more specific about the help I need, why I need it, what the risk factors are if I do not have that help, how I am currently struggling/failing to meet this or that criteria because of lack of help. But it is not a positive experience to spend days thinking intensively about the things you will struggle or outright fail to do for your child due to lack of resources that you reasonably believed you would have.

The only other positive I can draw from that meeting is that the Duty Social Worker didn't seem to disagree that I would need the help I said I would. She just feels that with austerity, social workers' requests get turned down more than they might have done a couple of years ago, and she doesn't like it when the panel say "no" to her.

At this stage, there's not much I can do about Social Services other than hope that the Duty Social Worker manages to persuade herself to present my case, and that the panel respond favourably to the information. It will be at least another couple of weeks of hoping before I hear back.

Meanwhile, there's still more than enough to keep me occupied with stairlifts and wheelchairs...

This is a technical document

Well, of course, it isn't, but I could put words like Cisco and network and voice over internet protocol all over it, and then it would look a bit like a technical document. It wouldn't make any sense, but I can't imagine who'd notice.

You see, ladies and gentlemen, there have been complaints. A particular reader is being a Bad Example To The Younger Generation by reading my blog at work, and apparently I must post more often. It's okay, English is unlikely to be the first language of anyone peeking over his shoulder. Yes, hello you. :)

There now follows a diagram. This proves the technical nature of this document which is entirely work related.



Look, I'm sorry. I mean to write more. I also mean to not just write about disability. I want to write more about my life and what I'm doing, but things divide into two groups:

• Things which are too boring and inconsequential to write about.
• Things which are quite interesting and I want to write about, but after doing the things, I'm too tired to write about the things until later.

Perhaps I should try doing shorter posts?

Today, I did some grocery shopping online. The best bit of doing online shopping when your brain doesn't work the way it's supposed to, is that when the shopping arrives, you've forgotten what you ordered. It's as if some kind of benevolent pixie sent you £70 of delicious food, and there isn't a single item you don't like!

I also had my laundry done. Yes, that's right - don't tell any of the women in my family, but I use a laundry service for my towels and bedlinen. I am a slattern who does not do her own housework. Or possibly a person who prefers not to injure herself wrestling large, wet, heavy pieces of cloth. Either way, in the morning the nice man picks up a sports bag of smelly linen from my house and in the evening he brings it back, fresh, clean, dry, and neatly folded.

I'm struggling with the paperwork for my assistants at the moment - making sure they get paid, and the monitoring that Social Services conduct to be sure I am using the money properly. I set up my systems really well, and my more lucid self has written out clear instructions for how to do each stage so that when I am not very well, I can still get things done. The problem at the moment is I quite literally don't know what day it is. I have "today" and "yesterday". All other days are confused together in a big tangle. So the timesheets and invoices got in a muddle and weren't submitted at the proper times... I think I've unpicked it, though.

Steve and I have been married for nearly a year and we are wondering what we should do for our anniversary. He's been able to book a little bit of time off work and we're looking at options. We have all these ideas - we'd love to go back to the Eden Project, or alternatively there are a few places in London we'd like to visit, for instance the Science Museum - but Steve is so tired out from work, I think he could sleep for a fortnight. We could just stay home and try to put together our wedding photo album. Right now we have thousands of photographs backed up to multiple storage devices, but unless you count shoving a USB stick into a digital photo frame, no album. There are also several guests who we have no pictures of, which is a bit sad.

The book I'm reading at the moment is Memoirs of a Geisha by Arthur Golden. I have read it many times - I first picked it up in high school. It's a bit of escapism, I suppose. I have the DVD as well, but I think the DVD won't make much sense to people who haven't read the book because it misses out an awful lot of backstory and historical detail. Some of the "historical" detail is inaccurate but then it is a fiction novel.

I don't know. What else? What do you want to know?

Following technical complaint about the diagram above: (written by evilstevie)
This diagram clearly only holds true for a relatively small number of passwords - above a certain point you are either some kind of memory-whizz or use a password-manager program to ensure the right password goes in the right box. This has to be the case as most applications of passwords also have something in place to prevent brute-force guessing of passwords, either a counter or timer (or in some cool applications, both) to make it difficult or impossible for you to try more than a few passwords. At a certain point on the graph you simply get a flat-line as you can't enter any more wrong passwords and you stop making new ones or come up with a new way of dealing with passwords. Also, I'd like to add that Batsgirl's clearly been around me too much when she considers VOIP usable in everyday conversation or blogging...

Restrictions Apply

Sometimes I find it quite difficult to use social media, as a disabled person. Not so much on a technical level, as on a privacy level. How much can I share with which people? How can I try to be sure no one gets the wrong end of the stick?

As a recipient of certain kinds of disability assistance I have to be aware that I may, at some point, be the subject of an investigation without my knowledge. That's not paranoia; the DWP quite openly advises that (over and above investigations of individuals reported as potential fraudsters) it regularly carries out checks on random samples of claimants. I'll be surprised if, in 2011, this doesn't include checking social media use.

I have nothing to hide. However, social media centres around succinct postings. Twitter is the extreme example at 140 characters, but even where there isn't a limit, it's not the done thing to leave a comment on someone else's blog that is 500 words long. How can I possibly fit in all the explanations and circumstances about how I manage to do something despite my limitations? Attitude plays a part as well. If I'm posting about having gone out somewhere with friends, my readers don't want to read, and I don't want to write, a post detailing which joints hurt and what kind of headache I had and how many times I had to stop and rest, that's just depressing!

My posts and tweets aren't earth-shatteringly important, but here's an example of what I mean:

What I want to tweet:
"Steve and I went for a nice walk round the block this evening."
What I feel I should tweet to avoid accusation:
"Steve pushed me in my wheelchair around the block this evening."

What I want to post:
"I had chicken primavera for dinner. Never had it before but it was really nice. It's chicken, pasta, mushrooms and veg in a creamy sauce."
What I feel I should be adding lest the DWP are watching:
"I had chicken primavera for dinner. It was a ready-made microwave meal because of the difficulties I would have with preparing such a meal from scratch. I had to sit down while the meal cooked. I ate the meal sitting at the kitchen counter because I was unable to carry it through to the main room without dropping it. The meal was only in my house in the first place thanks to the wonders of online shopping."

What I want to blog:
I went into town by myself! I bought X, Y and Z! I had cake! I feel very proud of myself!
What I feel I should add for the benefit of anti-fraud units:
It was the first time I left the house in a month without Steve right there next to me. I had difficulty getting a wheelchair-accessible taxi. I bought a coat in the sales but I could not try on any other clothes because I lacked the energy and co-ordination to safely get changed by myself in unfamiliar surroundings. My pain levels were high and the medication I took to relieve the pain had the side effect of making me feel very dizzy and sick. At one point I became lost despite the simple and familiar layout of the town centre. Despite purchasing and consuming a sugary snack in the hope of boosting my flagging energy, I was unable to accomplish all the tasks I had wanted to because I was too exhausted. Staff in the final shop I visited were concerned about how ill I looked. When I got home I had to nap on the sofa.

You see what I mean? The positive stuff is true. The negative stuff is true. They don't contradict each other if you know the full story, if you know me you can see how they mesh together. But if you were only reading one side of it, you'd think I was either fit as a fiddle, or the world's worst whinger.

I'd be interested to know how other disabled people manage to hit the balance between staying positive online, but not jeopardising their DLA.

Census 2011

About a week ago, the 2011 UK Census dropped through our door along with more or less every other door in the country.

The instructions on the front require people to fill in the questionnaire on or as soon as possible after 27th March 2011.

This is probably why the letters page of the Times on the 9th March carried indignant missives from people complaining that they'd filled in the form already and attempted to post it back but couldn't fit it in the postbox (I'd link but it was a paper copy of the Times that I'd picked up in a McDonalds in Norwich). I think that if we applied DWP form-filling rules and charged every household who couldn't follow that instruction £50, we'd have a chunk off the deficit in no time or at least be able to fund an adult education programme in English Reading and Comprehension.

The other bit which makes me smile is the indignation about a thirty-two page form!!!!! which is considered by many members of 'alarm clock Britain' to be an astonishing amount of difficult and time consuming paperwork, while us filthy disableds are going "only 32 pages, sweet!"

Better yet, once you're past the opening questions about "how many people live here" and "list their names", there's only four pages per person and most of that is tick boxes. I can't imagine it taking anyone more than five minutes unless they live in a house full of people who are unable to fill out the form on their own behalf, in which case we'll call it half an hour but that includes finding a biro that works.

Finally, I'd like to encourage all my readers to take the advice of the excellent @Scaryduck on the thorny issue of Question 17.

Good news

This post is not wedding related. And truth be known, I feel guilty about posting it at a time when cuts and reforms are playing merry hell with the lives of so many of my disabled friends.

I appear to have won at Social Services, and now I don't know what to do with my good fortune.

As part of Steve going back to work, I've been reassessed. Steve's new job involves a much longer commute as well as regular trips further afield, and that in turn means that there's less expectation on him to provide my care.

This is going to get complicated so first I have to explain about Direct Payments.

Direct Payments are paid into a bank account in my name and I am the only person who can access that account and distribute the money. All contracts are between me and the PAs or agencies who I choose to employ. This gives me control over my care. To give a simple example, I could decide to skip showering on a Thursday in order to 'carry over' enough time for a long bubble-bath on Friday.

What I can't do is take the money and spend it all on sweeties and computer games. Social Services closely monitor the account to make sure that it is only spent on items and services approved in my Care Plan. I can't invest it, and it doesn't even count as my money on my tax return. And once it's gone, it's gone - if I have long bubble baths every day for a fortnight and then realise there's no money left in the account to pay the agency for the rest of the month, that's entirely my problem and my responsibility.

Supposedly this reduces the admin costs for Social Services as they are no longer the first point of contact and no longer have to manage the carers or negotiate with agencies. They identify needs and then supply the money. Choosing the best way to spend the money to meet those needs is no longer anything they have to worry about.

So I've been identified as needing 45 minutes of help with personal care each weekday. I have some interviews (sales pitches) with agencies this week and hopefully something will be set up soon. Once it's set up, there's also scope for us to call in an agency carer should I need one when Steve's away from home for longer periods - even if we had to add the extra money privately, the 'account' would be in place.

They've also changed my social care. Previously I got money for the stated purpose of employing a PA for three hours a week to help me do "out and about" things I needed help with. This was about £30 per week - most of it for the wages of the PA, the rest to cover specified necessities like Employer's Liability Insurance, placing job adverts when I need to hire a new PA, that kind of thing.

Now, my assessment says I am at risk of social isolation (the internet doesn't count, who knew) and therefore eligible for two days per week of "daytime opportunities", but thankfully identifies that it would be inappropriate to send me to a daycare centre for two days per week. So what Social Services are doing, is taking the money they would spend on my daycare centre place, and giving it to me as a Direct Payment. It is rather more than £30.

We've identified that I will continue to employ my PA for three hours each week as a baseline, but after that, it's looking a bit blank, because I simply can't think of much to do.

This is apparently an indicator that I have already become used to social exclusion.

I don't just have to use it on PA wages. For instance I asked if I could use it for taxi fares to go to a knitting group or to a friend's house, situations where I don't need a PA sitting right there with me for two hours, but I need someone to make sure I get safely there and back. Apparently I can, as long as I get a receipt, and keep a log of the purpose of the journey (which must be 'social').

The best and worst of this system is that there's no list of approved uses. There couldn't be, because there's so many different things a person could do. I have to think of something I'd like to do, and then find out how much it costs, and then they'll tell me whether I can use my Direct Payments account for all, none, or some of those costs.

It's also a bit experimental. My Independent Living advisor tells me I'm the only person on her caseload so far with this setup. So no clues from that direction.

Ideas, anybody? So far all I've got is an Action Point of going to the library on Wednesday to see what clubs and groups and things are running in the area.

Doctors

I had to go and see my GP today. Nothing's wrong - it's just that every so often there will be a note on my repeat prescription asking me to make an appointment for a "medication review" and then I have to attend.

Since I got all the diagnostic tests and the medication-juggling and so on dealt with while I was still living in Lowestoft, by the GP who'd known me since childhood, the doctor who has been "my" GP for the three years I've been living here doesn't actually know me - so it made no difference that she's ill today and I ended up seeing a different doctor. Today's appointment was much the same as every other and pretty much went as follows:

Good morning, how are you?
Fine thanks, yourself?
Yes, fine, thank you. Please take a seat. So, what can we do for you today?
Well, I had a note on my repeat prescription telling me it was time for a review.
Ah, okay. *taps at computer* You're on X, Y, and Z, yes?
That's right.
Any problems with any of those?
Nope.
How are you generally?
Same as usual, nothing new to report.
Nothing you need to raise?
Nope.
*taps at computer some more* okay, that's done. Do you need me to do you another prescription today?
I don't mind, I've got a couple of weeks' worth at home still.
In that case shall we leave it and you can just pick up your repeat as usual when you need it?
Sounds good to me. Are we all done?
Yes, unless there was anything else?
Nope, all good. Thank you for your time.

The trouble is that, as a patient with an ME/CFS diagnosis, there are no other answers I'd dare give. I'm too scared of being labelled a malingerer. So I get defensive and clam up.

A plethora of medical blogs teaches me that patients like myself, with chronic illnesses that don't seem to get much better or much worse, are despised. "Heartsink patients" is apparently what we are called - we walk in the room and the doctor's heart sinks because he knows that all he can do is dole out the drugs, which is not the role he slogged through medical school to attain.

The heartsink patient presents vague symptoms that the doctor can do nothing about. They bother the doctor with pointless questions and ideas and they seem to have no idea about what sort of thing actually warrants bothering a GP and taking up his valuable time. The caricature is of a patient holding a sheaf of newspaper clippings and internet printouts about quack therapies, because it is wrong to be concerned about your health if you don't have a critical scientific background. You should leave that to the expert who sees you for eight minutes a year.

And then there's the whole ME/CFS physical/psychological debate. What is the difference between a headache that exists and a headache that the sufferer only thinks exists? Personally I'm not sure there is a difference. Both patients are experiencing pain. Speaking for myself, I underwent psychological assessment in the earliest phases of my illness and was considered to have all screws firmly affixed. But that's buried many years back in my notes. Many doctors still consider ME/CFS to be a manifestation of depression, or attention-seeking, or even painkiller-addiction, and nothing says 'mental health problems' like the statement "the shrink said I was sane!" so I keep my mouth shut and hope beyond hope that the doctor will take me at face value.

So thanks to the medical bloggers letting me know how they view me, I feel resented as a patient, and obliged to take up as little of the doctor's time as possible. I do not dare mention to any medical professional the links and patterns that I've noticed since my condition and medication settled, lest I be categorised as 'obsessed' with my health. I have a normal human desire for people to not think badly of me and that includes doctors.

Paradoxically, there are things I probably should be mentioning. I mean, earlier today when the doctor asked me - actually asked me - if there were any difficulties with my medications, that was probably the right time to mention that for the last eighteen months or so I've been feeling really quite queasy about thirty minutes after taking ibuprofen in the afternoon or evening (but weirdly not in the morning). But I don't know! If I say that, is it going to be a case of "right, we'd better try you on something different for a while," or is it going to be more "FFS, stop wasting my time and clogging up my surgery with your hypochondria!"

To be absolutely clear, this has nothing to do with any of the GPs I've ever seen at my local surgery. They have never been anything less than courteous, professional and efficient. It's the ones who dropped the professional veneer, albeit with anonymity, to come online and let the patients know just how contemptible we are.

So, GP bloggers, off we go. Complain about those bloody heartsink patients who don't know how to behave. Because frankly, I have no idea how to behave and if you could give me some constructive pointers I'd be grateful.

Credit profiling and benefit claimants

I'm sure everyone has by now seen the articles about David Cameron's latest crackdown on benefits claimants, with plans to pay private companies to rummage through claimants' accounts. I'd refer to his crackdown "on benefits cheats" but that's not really true - benefit fraud, particularly for disability benefit, is at less than 1%, which means that for every one fraudster he cracks down on, 99 genuine claimants, already dealing with poverty, sickness, disability, job loss and whatever other issues have led to them legitimately being on benefits, are being terrified and harassed. He's attacking claimants.

More money is lost through administrative error than through fraud. So it's interesting that Mr Cameron's plan of attack involves rummaging through the personal affairs of claimants rather than training his staff at the DWP and Tax Credits units to make fewer mistakes. Surely staff training is cheaper than investigating millions of claimants?

According to the Citizen's Advice Bureau, there's about £17bn of benefit that is unclaimed because people either don't know they're entitled to it, or can't deal with the application/appeals processes. Perhaps Mr Cameron is aiming to increase the unclaimed benefit with his campaign of "if you claim anything, we're going to have our grubby little paws all over your bank accounts and make your life a misery."

I'm very relieved to not be on means-tested benefits any more (I get DLA but that's for disability-related expenses such as mobility equipment, and not dependent on earnings or work status), as I almost certainly would have had a credit profile with red flags. The most regular things I bought on my credit/debit cards while living alone on IB and HB/CTB were:

- grocery shopping for more than one person and including baby stuff like clothing, food and nappies. (While I lived in Lowestoft, friends who drove would give me a lift to the supermarket. In order to take advantage of multi-buy offers and "spend £100 and get a voucher for cheaper petrol" offers, I'd pay for all our combined shopping in one go on my credit card, and then we'd split it up and sort out the cash when we got home.)

- lots of petrol, plus various car repairs and accessories. (I can't drive, but I often bought petrol for friends who drove me places and wouldn't accept any cash, and for Pip I also covered minor repairs on his car because without it I lost a lot of mobility).

I'd also occasionally buy larger or more expensive items for friends who didn't have the credit card/internet access combination at their disposal. They'd give me the cash, I'd order their (whatever), and it would be delivered to my address - because I was in most of the time anyway, and unlike the post office, they could collect from my flat outside working hours.

So I probably credit-profiled as a car owner/driver who shopped for a household of two or three adults and one or two young children and who had a reasonably high amount of disposable income for personal electronics. Which would be rather at odds with my claim to be a single disabled person, in a tiny one-bedroom flat, too ill to drive, no kids, and a low income.

It's just as well I'm not on IB any more otherwise they would have wasted a *lot* of time investigating me. But these sorts of informal money-saving measures are common amongst people on low incomes or with limited resources.

The other thing that tickled me was the idea that they will be looking for people spending money on gardening or DIY. You show me a person with a long-term medical condition and I'll show you a person who has been told by at least three medical professionals that they should try a spot of gardening by way of occupational therapy.

Geek/crip crossover

I just know that a lot of the readers of this blog will appreciate today's XKCD, even if they don't already follow it.


Description: A person saying "The sleep deprivation madness worsens. Things seem unreal. Am I even awake? Maybe I'm dreaming."
The person approaches a tree with a squirrel climbing on it. The person says "I'm pretty sure I'm hallucinating this tree. But what if I'm hallucinating that I'm hallucinating and I'm actually totally sane?"
The squirrel replies "Listen. I wouldn't worry about that."

XKCD usually adds an extra comment or punchline as alt-text. Today's is "I'm not listening to you. I mean, what does a SQUIRREL know about mental health?"

I loved this strip on so many levels. It's a perfect depiction of the kind of existential worry that you only encounter when you're sleep-deprived and/or drugged up to the eyeballs, when your grip on reality is slightly fuzzed and you start to ponder the nature of reality... after all, if I am hallucinating, I will be the last person to know that my hallucinations aren't real because they'll originate from my own brain! Maybe I'm hallucinating Steve, or hallucinating the internet...

(That's what usually settles it for me. I could not possibly hallucinate even half the stuff I see online.)

(edit for picture width, although I'm still not sure I've done it right.)

Indescribable

In my last post, I talked about the Twitter event Such Tweet Sorrow, a production of Romeo and Juliet being played out in real time over five weeks.

We're one week in and it's still a really tricky concept to describe. The biggest problem is that first, you have to describe Twitter itself which is still really hard to do for anyone who isn't already using it. Trying to describe the Such Tweet project itself, on top of that, before you can even begin to talk about how much you're enjoying it, what you think about it, how it makes you feel... it's nigh on impossible.

I'll give it a go anyway. I think Such Tweet Sorrow is most like an immersive fantasy game along the lines of Dungeons and Dragons or perhaps Knightmare. A bunch of people improvising within their given character descriptions interact with you; you are supposed to pretend that they really are those characters. Except that it doesn't require special equipment, like-minded friends, pens and paper, or time set aside to play, and it continues 24/7. As a Twitter user, it slots almost unnoticeably into the life which I am already living.

That's the bit that makes it a little disturbing. Due to the circumstances of my life - I am disabled, I work alone from home, I cannot drive and am waiting on a decent wheelchair - most of my interaction does happen online, and as such I do have several good friends (not to mention clients and suppliers) who I have never physically met.

There are also dozens, if not hundreds, of people who I consider to be part of my wider social circle. We're not friends in the sense of having heart-to-heart private conversations about our innermost feelings, but there's some shared interests, some common acquaintances, and we've had a couple of brief direct exchanges - we're friendly even though we're not bosom buddies. This is the area that the Such Tweet cast fall into. The stream of posts about whatever happens to be on their characters' minds - the progress of a football game, a trip to the pub, a crap day at school - is melding seamlessly into all the other incoming tweets about Dr Who, Mad Cap'n Tom's bid for Parliament, current affairs, Naidex 2010, and biscuit preferences. Every so often, I reply to an incoming tweet. Every so often, someone replies to one of my tweets. It's incredibly normal social networking and an outsider with no knowledge of Shakespeare or the Such Tweet project would probably not be able to pick out the fictional characters.

With it all being mixed in, the line between characters and real people gets blurred. I am reacting to the characters' tweets in the same way I would react to those of real people. The most striking example of this for me so far was yesterday, when @laurencefriar sent out a tweet about meeting some "courageous" disabled football supporters. Anyone who knows the Ouchers knows that the best way to get our hackles rising is to start throwing around words like "courage" "brave" and "inspiration" and I simply couldn't help the way it made me feel (ie: angry). I had to seriously remind myself that @laurencefriar is a made-up character who is supposed to be the sort of person who comes out with tripe like that. Then I thought, well, I'm supposed to respond, an emotional response to well-performed characters is entirely permissible and means the actors are doing their job right.

But it's made me start to worry about what's coming. The writers have admitted that they're not observing a religious adherence to Shakespeare's storyline, but it's safe to say that the basics remain in place - which means it's not long to go before there are a couple of violent deaths in my social circle.

If I find myself getting angry about "courageous" then who knows how I'll react to that?

Keeping warm

So, I'm at home all day now, more or less every day. The thing I currently miss most about work is that it was warm. The weather has turned quite chilly - as one might reasonably expect, what with it being nearly December - and so it's a good time for those of us who maybe can't quite move around enough to keep ourselves warm to remind ourselves of the current advice in the form of the Keep Warm Keep Well campaign.

Okay, so as usual there's ample opportunity to snigger at the naivety of those who wrote it, for example the way they think that despite the level of poverty with which many elderly and disabled people live, we'll all have central heating with a thermostat that works. It's also very easy to get angry about the failings of the Warm Front grants.

Nevertheless there's a lot of good tips and advice in there but some of it does seem a bit... mutually exclusive. For instance:

"Fit draught-proofing to seal any gaps around windows and doors."
"Remember to close curtains and shut doors to keep heat in the rooms you use most."
does seem to clash a bit with:
"If you use a fire or heater in your bedroom at night, always keep a window and door open."
"Keep your home well ventilated."

Am I meant to be sealing myself in, or trying to get a breeze coming through? I'm just not sure any more.

On balance I've opted for sealing myself in - it's warmer that way, and there are worse ways to go than carbon monoxide poisoning*, where from what I understand you feel drunk and then you fall asleep, which is a reasonable summary of my day to day life anyway.

It's a good tip about keeping the blinds or curtains closed, and it makes a noticeable difference. However when you're stuck alone in the house all day, even if you don't have depression or SAD, it's all too easy for your mood to plummet, so I'm making a point of spending at least a couple of hours sitting by the window with the blinds open trying to enjoy what natural light there is.

It's also a good tip about having plenty of hot drinks, although again, not without drawbacks. I know I'm not the only disabled person who, when having a painful day, doesn't drink as much as she should, in order to minimise the number of excruciating climbs up and down Mount Staircase just to pay a visit.

So I've formulated my own advice. Ready?

If you can, spend as much time as possible out of the house and in a place where someone else pays the heating bill.

This slightly contradicts the official advice about not going out unless absolutely necessary, depending on whether you read it as "don't leave the house" or merely "don't spend time hanging around outdoors". And of course for many of us it's impossible - or at the very least, the cost of taxis would outweigh the cost of properly heating our homes. But if it's in any way an option, my inexpert advice would be to do it. Spend an afternoon in the library, sitting by a window on the sunnier side of the building. Go to a shopping mall and sit under the skylight watching the world go by. If possible, find some volunteer work, then there's free tea and coffee too. Join in with a free course at the Community Centre even if it's a topic that doesn't raise your interest. See people, get sunlight, get your money's worth from your council tax, because there are few more frustrating ways of spending a day than cooped up indoors with the curtains closed, shivering.

* I am a very fortunate disabled person who lives in a centrally heated house with reasonably-sized rooms. I am not sealing myself into a tiny bedsit flat with a gas fire, so please do not worry - or at least, not about me...

Google does everything

except a very simple thing I want it to do.

I've spent weeks, on and off, trying to find something to quickly and easily calculate mileage when I'm out with my PA, so that I know how much petrol money to pay her, and I can't do it.

We mostly go to the same dozen or so locations, but not in the same order and not all in the same day. For instance, on week 1, we might go from my house to the doctor's and then to the bank and then to the swimming pool and then to the shop and then to my house. On week 2 we might go from my house to the bank and then to the library and then to the park and then to my house. On week 3 we might go from my house to the shop and then to the doctor and then to the park... you get the idea.

Currently I calculate mileage by typing all the locations into the Google Maps "get directions" thingy, and then confirming which one I mean for most of them, and then making sure all the dots are where they should be, and adding them up. It only takes ten minutes, and it works well because it plots a route that accounts for one-way systems and suchlike, but it's getting tedious because it's always the same places that I'm having to type in again and again and again, and I have to do it on-the-go or as soon as I get home because by that point I'm really tired and I can't depend on being able to remember exactly where we went post-nap.

I played with the google "My Maps" thing and put a handful of my regular locations into a "local places".

What I want to be able to do is open that up and then drag-and-drop the locations I went to on a given day from my "local places" map into the "get directions" boxes, click OK, and get a list that looks like this:

My House to Doctor: 0.6m
Doctor to Shops: 0.2m
Shops to Park: 2.6m
Park to My House: 3.0m
Total: 6.4m

... which I can just copy and paste into the mileage sheet ready to send off to the salary service each month.

I don't understand how there can be a google app to make my G1 look like a Star Trek tricorder, but not one to calculate mileage. Geeks have expenses claims too, right?

More PA Stuff

Wednesday was my second session with my PA. We went to the Pump Rooms in Leamington which is a sort of combination of art gallery, museum, library, tourist information desk, cafe, and function rooms. It was interesting, but in a slightly weird way.

We were wandering around looking at all the exhibits about the history of Leamington Spa, and of course a lot of that is information about, you know, the actual Spa part of it. Some of the more experimental equipment looked downright scary, but a lot of the descriptions made the spa experience seem like a lovely way to spend a day. The Victorian visitors to the spa would drink lots of water (although apparently it didn't taste very nice), and then you'd have a soak in this and a massage with that and a steam treatment over here and then you'd go through to a cooler room and relax on a sort of sun-lounger while someone brought you a drink and a snack. The place was purpose-built and therefore extraordinarily accessible, since a big chunk of the target market would by definition be elderly or infirm and therefore being wheeled about the place. However it is also beautiful, since another important aspect of its function was to be a pleasant and relaxing environment rather than a clinical one. Afterwards, you went across the road to Jephson Gardens to enjoy the gentle recreation and surroundings.

God, it sounded like bliss, the absolute art of relaxation. Which was the weird bit. To be a disabled and kind of stressed-out (don't ask) person, sitting in an accessible hydrotherapy and relaxation facility, which is no longer in use but gets given money to produce displays and information about how fabulous it once was...

I still haven't got the hang of having a PA yet, though. The problem isn't her - she's lovely and doing really well. I just can't seem to get my head around having an employee.

For example. On Wednesday, when we got back from our outing, I was feeling pretty rough, and I wanted a cup of tea. So while my PA brought in the wheelchair, I shuffled through to the kitchen and started trying to make a cuppa. I was visibly and obviously having trouble, and my PA asked if I'd like her to do it. Full marks to her for asking rather than muscling in. But I messed up - I autoresponded with "no, no, I can manage" just like I would if a friend was there.

But my PA is not there as a friend. She's there as an employee. Helping me with the normal stuff (like tea-making) that is difficult or painful for me to attempt to do is not an additional favour that I would be unreasonably demanding of a friend who has already put themselves out for me by taking me out. It is the entire reason she is there and is what she is getting paid for. It is unfair of me as an employer to expect her to stand around like a lemon watching me struggle when she is aware that her job description is to help me so that I don't have to struggle.

I really have to try and get to grips with the whole idea. Intellectually I get it, but in a more immediate sense, it's just... I get through my life by insisting that I am capable of being independent, that I can Do Things, although they might be more difficult or take longer. In my day-to-day life I do any number of things that are stupid or reckless or painful simply because they need doing and no one else is likely to do them - like hanging up laundry or heating up food or washing up dishes - and then I fall over or spill stuff or scald myself or break something - and then I basically yell at myself to stop being such a useless pansy and get the hell on with things. But it gets worse, because then on the occasions when I am offered help, I push it away! For instance, I'm so sick of people assuming that Steve does everything for me and waits on me hand and foot, that I overcompensate in trying to make sure he doesn't do anything of the sort. It's even worse with people I don't know well. Admitting I can't do stuff and asking for help is like doing a DLA form. I hate it. It makes me feel vulnerable. It's also really irrational and I need to find a way of sorting it out.

Nobody knows what's going on...

Being one who cannot walk or drive or use public transport, I sometimes make use of the local Community Taxi scheme. This is administered on behalf of the local council by a local football club whose premises are also used for all sorts of "community ventures". A journey by community taxi isn't as cheap as a bus, is only available during daytime hours, and you have to book a couple of days in advance, BUT it's door-to-door, it's guaranteed accessible and it's about half the price of a normal taxi, so swings and roundabouts. Generally, for unplanned things I need to use a normal taxi, but for planned things like say a dental appointment I use the community taxi. So far so good.

In February I got a letter from the football club telling me that the Service Level Agreement with the local council would expire at the end of March and that the council had decided it would not be renewed. The letter told me that the council would instead be issuing "taxi tokens" for people who could not make use of a bus pass.

Today is March 16th so there are 15 days left until the change from community taxi to taxi tokens. I still hadn't heard anything from the council, but we know that some of our post is *cough* going missing *cough* so I thought I'd phone the council to make sure I hadn't missed the letter and ask things like "what are taxi tokens?" and "when can I have some?"

The chap on the phone said they don't know what's happening yet. He said they were hoping a decision would be made within the next two weeks and that then people using the community taxi scheme would be written to and informed of what was going to happen. I don't know how long it will then take to physically distribute these "tokens" or where/how they might be redeemable.

So basically, having tossed the old system, which wasn't perfect but helped a lot of people, they hope they'll have decided what new system they want to use before the old system expires.

All of this makes me even happier to be able to report that it shouldn't bother me too much, because I now have a PA to take me places. She starts this week. A big round of applause for P at the Rowan Organisation who has very competently and patiently guided me through the entire process of getting Direct Payments and becoming an employer and hiring a PA, from advertising to insurance to contracts and everything else that goes with it. It's an awful lot to try and understand, especially with my brainfog on, but P has always been able to answer my questions and explain things clearly, thoroughly, and (this is important) without making me feel like a moron.

Regrettably the local council's SLA with the Rowan is also expiring at the end of March, so I'm losing the marvellously competent, efficient and trustworthy P, and in much the same way as no one can tell me about these taxi tokens, I still don't know who I'm getting transferred to instead to steer me through my first months as an employer.

I fear April may be Interesting.

Remploy and MPs

Finally, a response regarding the Remploy problems. My MP referred the matter to Anne McGuire, the erstwhile Minister for Disabled People. The response consists of a letter from Anne McGuire to my MP regarding the matter (dated approximately two weeks before she was replaced by Jonathan Shaw), and a covering letter from my MP, as it went via his office.

As you'll see from that article, whilst in office Ms McGuire was all about welfare-to-work. And my MP is James Plaskitt, the Benefit Fraud Minister. Surely if anyone should be up in arms about a company like Remploy skewing the stats for disabled people entering employment, it's these two.

Oh dear. While I like having faith in humanity, and believe that people as individuals are generally good, fair, and basically nice, I really must stop being so naive as to extend this to politicians.

According to my MP, "It appears that there has been a genuine and unfortunate error in the handling of your case, for which Remploy and the Government offer their sincere apologies."

Not fifty quid, then. Nor any thanks for my honesty in not taking the money and running, or for alerting them to the problems. And I wonder, Mr Plaskitt, if you uncovered a Benefit Fraudster on the claimant side rather than the government side, would you let them off with "apologies"?

No. Even if a benefit claimant made a "genuine and unfortunate error", they'd be hounded through the courts and at the very least, be required to pay back the funds which they had received on the basis of the erroneous information.

The letter from Ms McGuire was a little more illuminating. Sort of. I'm not going to reproduce any of it here as it's full of management gibberish and unashamed weasel-speak, but ten years as a fan of Dilbert has enabled me to boil it down and so I present the basic content in English.

1. Contacting me: Oops.

2. Only sending the signature pages: Oops.

3. Wrong dates: Oops.

4. Telephone call: Oops.

It seems Remploy contacted a whole list of clients to try and get them onto the Workstep programme. The list contained the details of 16 people, myself included, who should not have been on the list. No one noticed until I spoke up. The other 15 are being 'reviewed'.

For each point there's a lot of meaningless flannel about "ongoing continuous improvement programme" and references to undefined "additional measures" which will be put in place. Oops is about the size of it, though.

As for the '£50 for returning some forms' business: apparently £50 is considered a perfectly reasonable "incentive" for people to return information. Neither Remploy, nor the DWP, nor the wider government see anything dodgy about that at all. My apologies to Wat Tyler and Dr Crippen.

We Apologise For The Break In Transmission

Wow, no blogposts for a month. Not quite sure how that happened. My apologies to anyone who got concerned. I am okay.

On with the excuses, well, I had a week or so at the beginning of August where I couldn't seem to phrase anything right. After that, I kept telling myself I would blog later, which never came.

Two things are notable for having NOT occurred. First, I still haven't heard anything more on the Remploy problems. They were going to investigate it internally, but then my MP stepped in via the Department of Work and Pensions (DWP) and now contact is supposed to flow via the MP and the DWP. Which it isn't. In mitigation, my MP is the "anti-fraud" minister (see "we are determined to catch those taking money that does not belong to them") which probably makes it difficult to suddenly reverse mindset to a non-claimant whose problem is that they are being offered and declining to accept money.

Second, I haven't organised that proper week away at the coast and I'm no longer convinced that I want to. There seems to be an awful lot going on at the moment and I get the strong impression that my presence would only exacerbate matters.

However, I HAVE been doing lots of things.

I've applied to Social Services for help and they have done really well - preliminary assessment over the phone same-day, a home visit from a social worker to do a full assessment the following week, a home visit for a financial assessment the week after that, then it was a home visit from somebody from the Rowan Organisation to talk me through the options for Direct Payments and whatnot, and finally a visit for assessment by an Occupational Therapist.

This level and speed of response would be pretty good even if they'd just turned around and said "no, you're not eligible for any help, care, equipment or services, and even if you were, you'd have to pay the full cost." But amazingly, and despite all the horror stories I've heard from both service users and providers, they've really come through.

The social worker has assessed me as needing 7 hours of personal care and 3 hours of social care per week. The financial assessment means this will be funded by social services. The Rowan will help me use Direct Payments to hire a PA to help me. They will help me find a suitable Personal Assistant (PA), do criminal records checks, assist me with holding interviews, and help with the paperwork (eg taxes and NI for my PA). It's all ready to go and there is just one problem - while Steve agrees with the idea of me getting the help I need, faced with the reality of it he found that he has difficulty with the idea of someone coming into his house. I don't have the balls to just go ahead with it without his consent but hopefully we'll work something out soon, as it's really quite upsetting to be struggling and going without while knowing that I don't have to.

The social worker also said we could have an emergency plan, in case Steve is hospitalised or has a family emergency or something. The "In Your Place" scheme means that if something like that happened, a temporary carer would be sent to the house to stay with me and fulfil Steve's role - not just the active personal/social care things, but also supervision, and doing the things that I can't do but am assessed as not needing help with because I live with someone who can be reasonably expected to do them, like cooking or going to the supermarket or changing the sheets on the bed (the idea is that these things aren't "care" as he would have to do them anyway if he lived alone). The temporary carer would stay with me for up to 72 hours, until either Steve was back at home, or a longer-term solution could be put in place.

The Occupational Therapist has done well for me too. A lot of the simpler bits and bobs I need, Steve or I have already purchased, but she's got me things like a swivel bath seat that helps me get into the tub safely to have my shower. She'll come back for another visit next month to see how I'm getting on and think about what else I might need. Most of the things she wanted to prescribe, I can't have, because it's a privately rented house and the landlord might object to permanent objects like grab rails and level access and a stairlift being installed. But, she's writing down officially that she thinks I should have them, which might help with the DLA appeal and will be a head-start if we ever get our own place.

On a different level, I applied for an admin job. I made it to interview entirely on merit (I made it clear that I was NOT applying under the "two ticks" scheme) and from there got onto the shortlist, but didn't get the job in the end. I'm a bit disappointed. It would have been nice, it would have suited my skills more, and I'm keen to get out from where I am at the moment. However, my current job isn't unbearable, and it's not like there'll never be another part-time admin job advertised ever again. The feedback was positive but not in a vastly useful way - apparently my application, qualifications, experience and interview was all fine, there wasn't anything that they felt I should improve upon, and I'm the second choice, so they'll call me if the first choice passes it up or can't provide references.

Of course they might have just said all that to make me feel better. Who knows. For now, it suits me to take it at face value and think yes, I was good, someone else was better, never mind.

We went to the wedding as planned, which was a total success in every sense. We caught up with a few familiar faces from the darker corners of the internet, as well as meeting a few new ones, and had an absolutely lovely time. The weather behaved itself, so the ceremony took place with gorgeous sunlight shining through the windows and making the bride look even more beautiful. It was very relaxed, and everybody was happy. Technically I caught the bouquet, but we should probably bear in mind that I was the only one trying and it was tossed directly to me from a distance of about two feet, very theatrically, for Steve's benefit. Steve, for his part, pointedly ignored the whole thing. Bah.

I got to see Pip and the Littlun, who is now The Boy as he is more than waist-high. I can't believe how much he's grown! He'll be four soon. We played with his trains and read a story, and spent a lot of time doing a sort of counting/sorting game of his own invention with little ludo pieces. Seeing Pip was good. I have missed him an awful lot since moving away. We really could have done with an hour to chat like grownups, maybe next time.

There's been other stuff too - going places, seeing people. I can't remember it all and this post already has too much variety in it. It was a good summer. Hopefully there is still a little bit more to come.

Naughty Remploy

The other day, I got a letter from Remploy. Here's a direct quote, with my flags in brackets:

"To enable us to validate your employment status (1) we require further evidence of your registration and job start. Therefore, we are writing to ask you to sign the enclosed documentation (2)(3) and provide us with a copy of [list of documents such as my work contract, payslips, etc]....

... We understand the inconvenience this gives you and to address this, we will give you with a £50.00 giro (sic) on receipt of this pack/evidence." (4)

To take these flags one at a time:
(1) Validate my employment status? Why? With whom? What for? The only people who need to know about my employment status are the DWP (who know), the Inland Revenue (who know), and me and my employer (who definitely know). My work is valid, my tax is valid, my NI is valid, what other validation could I possibly need? And why have they dressed it up in officialspeak to make it sound like it's something important and necessary while conveying no useful information?

(2) The "enclosed documentation" consists only of the signature pages of several forms. I have the parts of the forms which say "I confirm the above information is correct" (a couple also specify that I understand that the information I give may be checked by the DWP) but I have no idea what the above information may or may not consist of. In other words, there is no opportunity for me to actually read what they are telling me to sign. What?!? How can a company whose raison d'etre is dealing with "vulnerable adults" possibly get away with encouraging people to sign things they have not read?

(3) The dates which have already been written into these signature pages are all "27/10/07". The Jobcentre DEA didn't even begin to refer me to Remploy until our sole meeting which was 3 days after that date - and Remploy didn't contact me until early December, by which time I was happily employed. In other words, they are encouraging me to falsify evidence which, if it is checked with the DWP, will be proven false. With my signature on it.

(4) Is it just me who thinks that £50 is rather a lot of recompense for the "inconvenience" of four signatures and a few bits of paper? Even if I had to hire someone to do it for me and sent it by courier, it wouldn't cost me anything like that. Given the extreme dodginess of the false dates and the not-enclosed documentation, one might even go so far as to consider the possibility (*avoids lawsuit*) that this may, by some people, be considered tantamount to a bribe for falsifying documentation...


With all this in mind, I decided to call Remploy to find out what the hell they thought they were playing at. After a short time, the woman whose name was on the letter phoned me back (woman? Yes. I should probably point out that to the best of my knowledge the male Remploy employee who was trying to help me find a way around the hours/NI problem a few weeks ago was not involved in this at all).

First she told me to just sign the boxes indicated and pop it all in the prepaid envelope and she'd take care of the rest, nothing to worry about, and then I'd get my £50.

I told her I understood that much, but before I started signing things, I wanted to know what it was that I was actually signing. She said they were just doing some admin for their own purposes, it's nothing I need to worry about, I just need to sign the forms, and they'll give me £50.

I asked why I was being asked to sign documents I had not been given to read, she said she was just trying to save on postage costs (they're offering £50 per person and they're worried about an extra 50p postage?!). By this time she was getting really annoyed with how awkward I was being and told me that if I was going to insist on being sent the full documents then she could do that, but really, there's no need, it's nothing I need to worry about, I just have to sign the forms and then they'll give me £50.

I told her that the dates were false. She tried to explain that they had to backdate things. I told her that her false dates could be easily proven false by the DWPs own records as they predated my original referral, and that I wasn't going to sign false documentation. At this point she changed tack to "okay, fine, don't sign the forms then. Just put them through a shredder and forget about it." I find it interesting that she specified that if I wasn't going to return the paperwork, I should destroy it. Maybe, despite her incredible lack of understanding of acceptable (never mind best) practice, she's really hot on data protection... or maybe she doesn't want me to show it to anyone. Oops.

She didn't seem to get that this sort of thing just wasn't on, or why I didn't want to participate, or why I felt organisations like Remploy should really know better.

£50 is a LOT of money to me (half a week's wages! more than a week's food!) and it really is quite difficult to effectively turn down free money. I suspect there will be others who have been sent this kind of letter who've decided that £50 is £50, and cheerfully signed away.

I don't want to have missed out for nothing. I have to do something with this, "alert the proper authorities" or similar, but I don't know where to start or who the proper authorities might be. Remploy, so far as I can ascertain, is government-owned and government-funded, and I don't know who they answer to or how to complain. I did ask about their internal complaints procedure and was told that a complaint would come straight back to that department to resolve - in other words, it wouldn't go any higher up the ladder and no one would be held accountable for bad practice.

I know I'm asking this a lot lately, but what would YOU do?

Mind the gap

So, over the last few months there's been a bit of a dip in my health, and work isn't getting any easier. Okay, so work isn't meant to be easy - if it was, they wouldn't have to pay people to do it. But this isn't "work knackers me out so much I can't go clubbing," this is more "work knackers me out so much that half the time it's hit-and-miss whether I can manage to have a shower, even with assistance," and that's really taking things too far. Of my daily "spoons", I'm prepared to hand most of them over for work, but I do need a few left for attending to my essential personal care needs, my bits and bobs of housework, my relationship with Steve, my friends and family, and - dare I suggest it? - a little bit of leisure activity beyond lying in bed sporadically knitting or poking at a laptop computer in between waves of pain. And I really should keep a couple of spoons in reserve for emergencies (like unconscious boyfriends, or mornings at the CAB).

For the last few months, I've been spending spoons I don't have, and reclaiming them by using my annual leave for days off work to recover. That's not sustainable. For starters, I don't have that many days of annual leave, and besides, that's not what annual leave is for. My boss, who is very nice, encourages me to take time off sick if I need it and I have taken some sick days, but I don't want to screw over him, the company, or my own sickness record, by taking a paid sick-day every week. But by pushing my limits like this, I am damaging my health in the long and short term. This cannot continue.

Solution: reduce my regular paid hours, for reasons of ill-health - work four short days a week rather than five. My boss is amenable to the idea; however, now there is a new issue. Since I am on a very low hourly rate, dropping this many hours will mean I no longer earn enough to be paying National Insurance.

National Insurance is very important. If you haven't paid enough National Insurance contributions ("the stamp"), you can't get benefits such as Incapacity Benefit or a state pension. When you have a long-term health condition, it's important to keep this safety net in place. If you are unable to work and claiming Incapacity Benefit, your stamp is paid. If I asked my doctor to sign me off as sick, and I stopped work altogether, I would automatically go back onto the rate of Incapacity Benefit which I was on before I started work. My stamp would then be paid and I would be financially "safe".

But I don't want to stop work altogether, and my doctor agrees that I don't need to stop work altogether. I just can't safely continue working this many hours without damaging my health. I fall into a kind of No-Man's-Land. I looked into voluntary National Insurance contributions, but at £8.10 a week that's out of the question - my earnings would be reduced to below-benefits-level because of working less hours, deducting another £8.10 a week on top of that just makes the whole thing silly. Who should I call to help figure this out? Roll call!

My boss continually assured me that as soon as I knew what I needed from them by way of adjustments, he would get it sorted out for me.

My doctor said she didn't know what the rules were - her specialist field is medicine, not employment, tax or welfare - but she assured me that she would support me with whatever I needed and offered that if necessary she would write me a very specific sicknote detailing that while I needed to work reduced hours, it would be detrimental for me to stop work entirely.

The Incapacity Benefit helpline took a while to understand that I didn't want to stop work completely and then told me they would get back to me with an answer (they never did). They also recommended I call the Disability Employment Adviser (DEA) at my local Jobcentre.

The local Jobcentre DEA, who we've met before, didn't even attempt to help me find a solution when she finally deigned to call me back, but gave me an earful about how "Incapacity Benefit is not a lifestyle choice just because you feel like working less." Happily this is the level of supportiveness and understanding that I have learned to expect from her, so after a few minutes I gave up on my efforts to explain that this wasn't about "choice" or about how many hours I "felt like doing", nor about an effort to "boost my income with benefits", and just let it go.

The local Jobcentre Incapacity advisor said much the same.
"You can work less hours and make voluntary NI contributions."
"But if I work less hours, I will have less money, and not be able to afford NI contributions."
"You can claim Tax Credits if you are poor."
"No, you can't claim Tax Credits if you work less than 16 hours a week."
"oh yes... well, your partner can claim Tax Credits on the basis that he has a low income and a dependent with a long-term health problem."
"My partner's a contractor, we'd have to fill in a new set of forms every week. Besides, it's not that we're poor as a household. It's that I want to pay my own way. I want independence, not to have to rely on him for handouts."
"Benefits isn't independence. Work is independence."
"But I'll be better off on Incapacity Benefit."
"I never said that..."

The CAB told me to contact the doctor, the IB helpline and the DEA at the local Jobcentre. When I said "done that" they were pretty much out of ideas and that I probably had no option but to give up work entirely. I told them I was waiting for a call back from Remploy. They said that was my best bet, then. Oh good.

The bloke from Remploy suggested that if I got back onto Incapacity Benefit, then I would be allowed to do Permitted Work. People doing Permitted Work keep their IB, and can work up to 16 hours and keep up to £88 of their earnings each week. But except in special cases, this is only for six months (after which you either go to full-time, or stop work completely).

I asked if there was a route that was more 'sustaining employment' than 'starting employment'. He told me that New Deal for Disabled People (NDDP) is being phased out and replaced by something called Pathways to Work. Pathways to Work have been active in my local area for about a month via a private company called Working Links. According to my Remploy chap, the staff at Working Links are fairly new to the game (obviously, since they've only been here for a month) and they took over a week to get an answer to him regarding my situation. The answer was that eligibility for help from Pathways to Work is dependent on having been on Incapacity Benefit for the previous 13 weeks. Which I haven't been. I've been working. So I can't have any help, unless I'm prepared to spend a quarter of a year being completely unemployed again and then hope that I can get my job back.

That's not helpful.

The biggest help so far has come from my boss and the company accountant. We've worked out the minimum number of hours I need to work to retain my NI contributions and that is how many hours I will be working as of this week. We've had to tweak a bit, basically from now on I will only be going in four days a week (giving me Wednesdays to recuperate as well as Saturdays and Sundays), but working an extra half-hour on those days. We'll have to see how well it goes. It's still more hours than my doctor and I think I really should be doing but at this stage it's better than completely giving up work.

Here's my options.

Option one: work 17.5 hours a week. National Insurance contributions paid. Take-home pay of about £88 a week, after tax, NI, transport costs etc. Working more hours than my doctor thinks I should. Precious few 'spoons' left.

Option two: work 12 hours a week. Take-home pay of about £57 a week after voluntary NI and transport costs. About the right number of hours work for my current state of health, and enough spoons left over to attend to basic daily needs (eg mountain-climbing: no, grocery shopping: yes).
Edit: I have been informed in the comments that voluntary NI counts towards one's pension, but is not counted for an Incapacity Benefit claim.

Option three: stop work and go back on IB. National Insurance contributions paid. Take-home pay of about £85 a week. All of my time and spoons to myself. However, no colleagues to chat to, no work goals to accomplish, no acceptable answer to the question "so, what do you do for a living?" and precious little self-respect.

What would you do?

Well, that answers that question.

So much for wondering how I'm going to fill the hour or so per day that I've spent doing my DLA forms for the last few weeks.

This morning, as I was sat on the staircase putting my coat on in order to go to the Post Office and send my Enormous Wodge Of Paperwork, the postie arrived and shoved a brown envelope through my letterbox.

It's from HM Revenue and Customs, Tax Credit Office.

Click here for the previous episode.

The short version is:

2005 - 2006: I owe them £500, which I would happily pay, except I do not have it due to becoming ill, loss of job, going onto benefit, etc. They defer payment. They ask for this £500 every three months or so. I still do not have it. They defer payment. And again. And again.

At the end of 2006, they send me letters saying I don't owe them anything, £0.00, zero balance. Woohoo! I don't hear from them for the entirety of 2007. Huzzah! I figure my debt must have expired.

2008: they demand payment of £500, immediately, or else legal action. WTF? I ring them up. They send me a form for disputing overpayments. I write to them explaining that I don't deny that I did owe them £500, once, but that in 2006 they wrote to me telling me I don't owe it any more, and I think it's a bit nasty of them to suddenly change their minds and threaten me with legal action.

Today's letter was basically an explanation of how I came to owe them £500 in the first place.

I already knew that bit. I'm not disputing that bit. I'm disputing whether it's okay for them to go "You don't owe us any money any more. *pause* Whoops! actually, you DO owe us money, after all."

No mention is made of the letters (which I sent them copies of) that told me I owe nothing.

It just says that I owe them the money, and, direct quote here, "You cannot appeal against the decision to recover your overpayment."

So tomorrow, I must phone them and explain in great detail about how my income does not cover my essential living expenses (rent, electricity, water). I suspect that we will then enter the deferral cycle again.

Meanwhile, I enter into a written-correspondence argument with the "Customer Service and Support Group Officer" who was unlucky enough to sign this latest letter to me. Who thinks I should finish my letter with a demand for a copy of their complaints procedure?