Wednesday, December 30, 2009

2009 - A Roundup

As usual, the year began with my birthday, which this year was accompanied by a visit from my mother. I also managed to get everything ready for hiring a personal assistant with Direct Payments and finally placed the advert. I found it very scary as I was desperate to be a "good" employer and worried that I'd get things wrong.

Meanwhile Steve and I found time to go on a number of weekend outings, including trips to the National Sea Life Centre, Birmingham and the Roald Dahl Museum and Story Centre.

There was snow in February and I suffered for it, and I'm sure I inflicted some of that suffering on to poor Steve. I had a another job interview but I started becoming very concerned about whether I was getting all these interviews because of my employability, or whether they were "sympathy" interviews thanks to the Two Ticks scheme.

In March my local council decided to withdraw the accessible Community Transport scheme which had until then provided the only affordable means of local travel to disabled residents like myself who are simultaneously unable to drive and unable to use public transport.

Luckily for me, I had just hired my PA and, although I had a little bit of difficulty getting my head around having an employee to help me (as opposed to struggling on insisting I can manage) we got on well and quickly developed a smoothly functional working relationship, allowing me to participate in the world a little bit more.

April saw a few changes to my working life, as my manager B asked me to take on a few more admin tasks (which meant a bit less of the more physical packing-CDs tasks). I really enjoyed learning the new things I was doing, but didn't want to tell anyone about it because it wasn't a "formal" change, and the main part of my job was still dealing with the CDs. This informality turned out to not be a good thing.

I attempted to argue with the council about the loss of transport provision, but although a number of councillors acknowledged my arguments and promised to attempt to put forward the issues I had raised, nothing came of it. The entire budget has been allocated to over-65s in "rural areas", regardless of their mobility needs - a hale and hearty over-65 who is perfectly able to walk, cycle, drive a car or catch a bus gets help, an under-65 who can do none of these things gets no help.

Once again, May started with Blogging Against Disablism Day. I wrote a post about people who assume the right to make our life decisions for us, followed by a roundup of my favourite BADD posts from elsewhere in the blogosphere.

In June I was far too busy doing things to actually write about any of it. Steve finished working for a while and went off on his motorbike to the wilds of Scotland, although regrettably the "summer" weather meant that the beautiful camping holiday he had planned turned more into a series of hops between B&Bs and cafes where he could dry out a little and get a hot drink inside him. I, on the other hand, went off to Lowestoft to see Pip and the Boy for a week, and came back gloriously sunburnt despite lashings of high-factor sun cream. In fact my only regret about my holiday was that Pip and I could not have the marvellous roast dinner we'd been planning because it was simply too hot to eat proper meals, let alone cook them.

My beloved and trusty laptop finally gave up the ghost after more than three years of almost permanent use. I have a new one, but it runs on Vista (shudder), it's unstable as anything, and try as I might, I just can't love it.

Terror came in August, as the government revealed plans to axe certain "disability benefits" that are given to disabled people to enable us to meet the extra expenses that disability incurs, and instead give the money to Social Services to spend on our behalf.

I made another effort to get the council to consider reinstating some sort of transport provision for under-65s who cannot walk, drive, or use the buses - even if only for medical appointments - but again, while I was listened to and agreed with and notes were made by the councillor I spoke to, nothing has been put in place.

Despite this, it was a wonderful summer and Steve and I enjoyed many lazy weekends, often involving a cream tea in some local beauty spot. If it wasn't for the his'n'hers G1s you'd be forgiven for thinking we'd fallen into the 1950s. My friend Carie won several prizes at her Village Show, but my own culinary skills remain somewhat lacking.

In September my employment status started to become a bit shaky. My line manager B, who had been responsible for moving me to a more admin-centric role, left the company and suddenly I found myself being assigned much more physically demanding tasks by his replacement. I asked for a clarification of my job role and, if I was expected to do different tasks to the ones I was doing at the beginning of my employment, a new Access to Work assessment.

Meanwhile, I started on a second job for a friend of mine, a couple of hours here and there, working from home to top up my income a bit and improve my CV as well as help her out. Steve also went back to work after his "summer break".

October was when things fell apart. My PA informed me that by the end of the year she would no longer be able to work for me, and I got the forms through for my DLA renewal - all 40 pages of it. While attempting to get help with the forms, I got stuck on an outdoor lift which isn't a fun thing to do in October, and I really started feeling like I was drowning not waving...

And then to round the month off, my managers responded to my request for job role clarification and a new Access to Work assessment by telling me that if I couldn't do all the new tasks that I was expected to do, then I would have to start looking for alternative employment. I decided to quit and make it my decision rather than theirs.

Somehow I kept on top of things and managed to work my notice, complete my DLA form, and prepare my employer paperwork for my PA's departure. Once I was no longer at work things got a lot easier and I started seriously looking into setting up my own business. I ran into a lot of barriers because of the disability thing - not being able to "pop over" to Coventry for a day's informal workshop every so often meant that I was left to my own interpretation of online materials. There are a lot of helpful PDFs out there, especially on the HMRC website, to help someone trying to set up their own business. Unfortunately there's no way of telling which ones are the useful, relevant ones, and which ones don't apply to you... the worst day of this saw my phoning my mother's house and opening a conversation with "talk to me about something that isn't tax!!!!!"

My PA was off sick a lot and I found myself gradually going potty from being stuck indoors on my own all day. While waiting for a referral to a specialist "disability" business advisor (which wasn't all I'd hoped) I set to preparing all the Christmas details, which paid dividends as Steve and I were both struck down with Lurgy in the middle of the month and we never would have managed it as a last-minute job.

Christmas was lovely, with lots of gifts and food and relaxation and monkeys. However the Lurgy seems to have reasserted itself, so unless both Steve and myself have a dramatic improvement in the next few hours, our New Years celebrations are likely to consist of little more than being woken up by midnight fireworks and having a celebratory nose-blow.

Happy New Year to all my readers, and especially to all those who have left comments - you've made a real difference to my life.

Monday, December 28, 2009

Monkey World!

Christmas went off without a hitch, very relaxed, lovely presents, saw a couple of people, had plenty to eat, marvellous. Then it was Boxing Day, the snow had thawed and the sun was shining and I really didn't want to waste the day by sitting indoors staring at the computer. We ummed and ahhed over a few ideas, but we didn't especially want to brave the sales, and we couldn't be sure of which of our favoured haunts for cups of tea and cake would be open on Boxing Day. So in a rare burst of spontaneity, we decided to go further afield.

orang-utan chewing a sock with yummy treats hidden insideWe came up with Monkey World in Dorset. The idea was that we could spend the remainder of Boxing Day packing in leisurely fashion and doing the three-hour drive down to the south coast, get to a hotel in time for dinner and a good night's sleep, and then in the morning we could get up nice and refreshed, see the monkeys for a few hours, and drive back home again. Unfortunately, while the park is open every day except Christmas Day, the admin office for bookings and information is only open Monday to Friday, so I couldn't phone in advance for the finer details of the access features.

Now here's the thing. Disabled access... well, it can be a bit hit-and-miss. An attraction boasting a blue wheelchair symbol could mean that there's an entire step-free multi-sensory experience within, enjoyable for anyone regardless of impairment. Then again, that blue wheelchair symbol might just mean that a standard-size manual wheelchair can get through the entrance gate and that somewhere on site is a single disabled loo which might be usable once the boxes of cleaning supplies have been moved elsewhere. It is in the interests of any attraction to claim to be easy to find, accessible, value for money and so on. The question is always to what extent the promotional materials match the reality.

Which is why, as Steve booked us in to our hotel for the night, I was picking up as many leaflets as I could see about other winter attractions in the Dorset area. Just in case.

orang-utan inspecting my mobility scooterHappily, I needn't have bothered. The claim on the website that they have "a selection of 25 motorised scooters" was not marketing-speak for "given enough notice, we can hire up to 25 scooters from other companies" - they really have got their own fleet of mobility scooters, charged up and ready to go, in a covered pen right next to the entrance gates. It's still safer to pre-book, especially at the busier times of year, but seriously - 25 scooters! It beats hands-down the one or two ex-NHS wheelchairs that are generally available elsewhere.

Unless you are very fit, I would definitely suggest using a powered mobility aid rather than a manual wheelchair because some of the slopes are quite steep. However, they are mostly surfaced with smooth tarmac, they aren't dangerously steep, and they certainly beat steps.

The whole park is accessible to the scooters with the exception of a "woodland walk" which, as you might guess, is a walk through some woodland. There aren't any monkeys in that section though, so I didn't feel I was missing much. Even the playground has an accessible swing*, and of the two accessible toilets, only one had a baby-changing table fixed to the wall, but... it was at wheelchair height! You may now retrieve your jaws from the floor.

Even more impressively (yes! there's more!) is the acknowledgement that accessibility does not begin and end with wheelchairs. If you aren't a wheelchair user but can only manage a certain amount of walking, there's a liberal scattering of memorial benches throughout the park. If you have impaired hearing, you can request printouts of the keeper talks. If you have impaired vision, you can request information in Braille, and there are also several tactile sculptures to enable you to get an idea of the features and scale of some of the park's residents. They've really thought about things, and you get the impression that they'd be open to other suggestions.

However this has turned into a post about access rather than about monkeys, and it was the monkeys we went to see.

baby chimp taking a ride on an adult's backMonkey World is primarily a rescue centre rather than a zoo, and the focus is very much on the rescue and rehabilitation of primates, followed by the education of humans. For instance, there are scores of capuchins and no gorillas. This is because there were a lot of capuchins needing rescue, whereas there aren't so many at-risk gorillas and there are better facilities available for the few that do crop up. There's no one there going "Bob, we've got to get a couple of gorillas, it'd be a real crowd-puller."

orang-utan looking out of the window at the cameraDo not go if you want to be "entertained", do not expect parades and cartoon characters, and I think if you were so crass as to ask to pet a monkey or have your photo taken with it, you would probably be ejected from the premises. Most of the residents have been rescued from a life where their "job" was to be a photo prop cuddling tourists.

Don't get me wrong, it is very entertaining to watch the monkeys playing, and to hear or read about their adventures and interactions. They even have their own TV show (in fact Steve and I may have been the only visitors not familiar with the monkeys from TV. I've since discovered that the programme is on Tuesday evenings when I go to knitting). But it's also really nice the way everything is done to fit around them being monkeys, rather than them being exhibits. None of it is Disney-ified or over-anthropomorphised. If anything it's the reverse - even the playground areas are set up to mimic the equipment in the enclosures, which I thought was a nice touch.

Adorability Award: Woolly MonkeyMy favourite group was probably the chimps. I loved watching them flying about the place in much the same way as I enjoy watching Parkour. Despite the enclosed space, there is a tremendous sense of freedom and of synchronicity with one's environment. I felt the most empathy with the orang-utans, and my Adorability Award goes to the woolly monkeys.

We had an absolutely wonderful time wandering round, despite the cold weather. I'm shattered now, but that was only to be expected and I think it was worth it.

All the photos were taken by Evilstevie and can be found here.

* No, I didn't.

Tuesday, December 22, 2009


I knew there was a reason I'd put so much time and effort into getting ready for Christmas well ahead of time... we went to a big family meal with a handful of children small portable germ warfare agents present, and now Steve and I are both suffering from Winter Lurgy. Yesterday in particular was hideous, with a mother of a migraine that actually made me throw up (usually they only make me feel nauseous).

Thankfully, having everything sorted out already, along with me not being "at work", has meant that I've been able to properly rest up every day so I'm nothing like as floored as I would be if I was still thrashing myself to pack CDs. Since I'm not that wiped out, I'm able to tackle a bit more of the household stuff than I otherwise would, which in turn gives Steve half a chance to recover when he staggers in from work.

It does mean I've had to put the business development stuff on hold. Again. Yup, the hopes and dreams I had for that referral to the Council for Disabled People being the business development support I needed were unfounded. It turns out that this particular project is set up to help "voluntary and community organisations supporting disabled people" rather than helping disabled people set up businesses that intend to serve anyone, disabled or otherwise. It was a completely inappropriate referral and all we can guess is that the person who referred me was just panicking and opting for the first project with "disability" in the title.

So I'm pretty much figuring it out on my own now, with some helpful printouts from Business Link and any number of PDFs on the HMRC website. Most of the basics are in place - including, today, the good news that my PO Box will be up and running at the beginning of the year - but I have kind of lost momentum. I think I may be best off calling it a proper Christmas/New Year holiday and picking it up again after my birthday.

Also in the New Year, I'll be interviewing for a new PA, as the lady who has been working with me this year has gone on Maternity Leave. I'm quite hopeful, and a lot more confident now that this is the second time going through the recruitment process.

Despite the various setbacks, I'm still feeling really positive about things, and as usual I'm very much looking forward to Christmas. So let's round off with my really awful snapshot of my really lovely Tree.

My Tree!

(edit to add title!)

Sunday, December 06, 2009

I am that good

Feeling rather pleased with myself at the moment.

I've more or less stopped flustering and panicking about self-employment (remember that five weeks ago the concept hadn't crossed my mind) and I'm making good, steady progress towards being set up and ready to go. I've completed about half of the online business course, and about two-thirds of my business plan. I've taken care of a number of practical issues (things like the VOA assessment for whether I'd have to pay business rates) and I have some sensible questions to ask the advisor I'm meeting with this week. I've picked a name, set up an email address, installed a suite of office software, done some market research, got some quotes for logo-type artwork... the list goes on*.

On top of this, I'm also ready for Christmas. Steve's having a bit of a trying time at work right now and tends to come home with his brain dribbling out of his ears, so I took charge. Step one, I made a list of people we should buy presents for and a list of people we should send cards to. Once he'd approved these, step two, I wrote out all the cards for him to add his signature. Step three, we determined who we were likely to see during December and dug up addresses for the others, and I sorted out the envelopes all nice and ready for the postbox. Step four was a list of suggested gifts from online retailers for almost everyone on the present list, approved and purchased.

Step five was an actual shopping-centre trip to dig up gifts for those we hadn't found anything for online. Step six, I've been wrapping and labelling the gifts as they have come into the house. We are now at a point where the completed boxes of wrapped presents have been dispatched to the people we're not going to be seeing this year, and there are a couple of plastic boxes of wrapped presents and a stack of cards ready for the people we are planning to see.

We are, in fact, all set for Christmas, which is pretty good considering that we're still in the first week of December. Steve isn't sure whether to be amazed or disturbed, but is presenting it as concrete proof of my abilities to anyone who asks him what it is I'm planning to do and whether I'm any good at it.

*by the way, one of the items remaining on the To Do list is finding someone to hold my hand through the website process. Any takers?

Tuesday, November 24, 2009

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...

Saturday, November 14, 2009

Pass the parcel

So, in my path to become self employed, we were as far as: I need help from Access to Work in order to work, I need a business plan in order to get help from them as a self-employed person. I contacted Business Link (who, as you can see, are a and therefore official) and they referred me to a local business development agency.

The local business development agency said yes, we run free informal courses for people starting up their own businesses, during school hours, locally. Great! Except "locally" is apparently Coventry. To a Normie living where I live, that's £5 for the return train ticket and maybe £2 for buses at either end. For me, it's over £20 each way in taxi fares (big thank you to Warwick District Council for removing the accessible transport scheme).

I'd pay that money quite happily for a one-to-one session with someone who would check that I had ticked all legal boxes for my specific situation - or more importantly, tell me which ones I missed and what to do about it - and confirm with authority that I was ready to start trading. But I don't exactly have it knocking about as spare cash to hazard on fuzzy informal courses that may or may not have any relevance to my business.

Oh, they said.

So they in turn have passed me on to something which might be called the Regional Disability Infrastructure Support Service, or might be the Council for Disabled People, or might even be something else entirely. I'm not sure what this multi-monikered organisation's remit is - whether it's helping with the transport issues or helping with the "setting up a business" issues - but it doesn't matter for now as they can't see me until mid-December.

Meanwhile, I am apparently welcome to use the resources and forum at the website of the Coventry-based business development organisation. The resources are... well, they're very good, nicely laid out, but I am worlds away from their target audience. Here's a small quote from the section on Personal Development and identifying transferable skills that may be of use in your business:

Do you organise yourself, your children and your partner?
Organise the playschool’s fundraising activities?
Act as secretary to the tennis club?
Organise lots of social functions for you and your friends and family?
Cook and shop?
Organise who does what in the local community fair?

In other words, am I a vision of middle-class feminine perfection? Well, no. I have many skills that I use, as an employer of a PA, as an employee of my bosses, as a "customer" of the DWP and Social Services, as a blogger, as an active participant in the disability community, as a friend, as a supportive partner, and as a housekeeper. But I am, in short, not their kind of person, and knowing that makes me wonder how much they will actually help me.

For now, I continue ploughing through pages after page of information that for the most part doesn't apply to me, gleaning out the little germs of usefulness.

Thursday, November 12, 2009

Paid time off

I've worked my last afternoon at work, accepted my leaving card and gift voucher, spent a couple of hours sitting in a pub listening to my erstwhile colleagues talk about things that are now a big old heap of Not My Problem, and now I am on paid holiday time for just over two weeks while I wait for my contract end date and my P45.

Today, at about the time I would otherwise have been getting ready for work, I turned the heating on. When I would have been getting into my taxi, I went upstairs and put some nice essential oils onto an aromatherapy diffuser. Then I ran a bath (big thank you to Steve who scrubbed the tub just for this), added half a bottle of bubbles, put on a CD of meditation music, and settled down for an hour's soak that, technically, I was being paid for. Bliss.

Of course there's only so much time you can spend gazing at the bathroom ceiling, so as per the advice given on previous posts, I also contacted Business Link to find out what they could offer someone in my position. I think this was a good move. I now have a name for the type of work I'll be doing - Virtual Assistant - which is much easier than "doing admin and officey stuff from home for people who need things doing but don't have the resources for a full-time on-site admin assistant". I'm being sent an information pack about that sort of work; in the meantime my details have been passed to a much more local Business Development Agency who are affiliated with Business Link and should be able to provide more specific support. Above all, they will help me write up a Business Plan, and with a Business Plan, I can get support from Access to Work as a self-employed person, and that opens up all sorts of possibilities.

I'm scared as hell, but apart from that I'm feeling really very positive about the whole thing.

Meanwhile I just keep listing in my head all the things that I don't have to worry about any more. I'll hopefully stop having nightmares where stacks of CDs fall on top of me. I can grow my fingernails, and paint them, without them getting broken and chipped on tape dispensers and dodgy shelving. I'll hopefully be in a lot less pain. I'll be in charge of whether or not I have music on, and if so, what sort of music, and at what volume. It's going to be great.

Sunday, November 08, 2009

There is no pause button on my life.

I feel that this is an appalling oversight on the part of the manufacturers. Still, what do we do?

So, I've resigned from my job and the final details have been ironed out. I officially finish at the end of this month, but I have quite a chunk of annual leave left to use up so my last actual working day is Tuesday 10th November.

My handy printout from the nice lady who does the payroll confirms that I only had one and a half days off sick in the last 12 months, which is way below average, even pro rata, and should be a jobsearch asset. I turned myself inside out to keep it that way and I'm so glad I didn't have to screw it up at the end by getting signed off.

It still stings quite a bit that leaving the job wasn't entirely my choice - I could have stayed another few months but would have been trying to work (a) without any additional support or equipment to deal with the increased demands, and (b) in the explicit knowledge that I was not wanted there. But I am still convinced that my decision to not attempt to drag it through the courts is the right one. I would rather use my energy on dealing with the necessities of life (considers another YouTube clip, decides against it) and have a bit left over for, you know, enjoying myself.

I have managed to complete my draft answers for my DLA form, which this time round is just over 19,000 words. It saved a lot of typing that I already had my answers from last time in electronic form, but it wasn't just a straight copy/paste job because they've shuffled the order of the questions, and merged some questions and split others up differently. Although my needs haven't changed, I also had to change some answers to account for factors like the PA and the social worker that I didn't have last time - for instance, whereas last time I wrote "I would like to go swimming, the help I would need for this is XYZ," this time it was more "When I go swimming my PA helps me with XYZ." The help I need is the same but the context has altered and the form must accurately reflect the current situation.

I've got all of my Social Services paperwork up to date as well, which is a relief after the collision of two separate threads of PA issues and the Monitoring Return. Better yet, the Monitoring Return was approved without query and I don't have to do another one until January.

My Access to Work advisor got back to me, and says that although I'll have to re-apply for support with my job as I switch from PAYE to self-employed, since I'm on the books and my needs haven't changed it should go through quite smoothly. I've prepared my "final" forms for my transport support, ready to be stamped and signed by my soon-to-be-ex-manager on Tuesday.

So, all that stuff dealt with, I think after Wednesday I can properly apply myself to researching things like Business Link and getting everything in place to embark on the self-employed adventure in December.

One question. I hear that when I set up as self-employed, I have to give my 'business' a name. Apparently many people use their own names, but I don't really like my full name and I'm not sure I want it to be google-searchable either. I'll probably end up with a generic [name of business advisory service][client number] combo, but if anyone has any ideas I'd be interested to hear them.

Thursday, October 29, 2009

All Change

So, obviously the gods didn't feel like I had enough on my plate with the DLA/CAB stuff and the Social Services stuff and so on, because on Friday, I lost my main job. Sort of.

To start at the beginning... when I started that job, two years ago, the company was a small one and the job mostly consisted of sitting on a perch-stool at a workbench, selecting and scanning CDs, packaging them up with the right address/postage/customs stuff on them, and putting them on a shelf depending on which part of the world they were being sent to. The CDs I needed were mostly within reach of the workbench, but four or five times a day, an order would come up containing a CD that was on a shelf on the other side of the room. Excitement! Sometimes there would be some sort of special request or larger order to sort out, but mostly, that was it, until the end of the day when my colleague would put the packages we'd done into mail sacks, weigh them, and I'd put the information into the Royal Mail website ready for the postie to come and collect it all.

However, the company has grown, and with it, so have the demands of the dispatcher job. It's steadily increased over time. Now there are CDs in stock filling floor-to-ceiling shelves in two rooms, orders often weigh in excess of two kilos, and the loft space has been adapted to hold the supplies of flatpacked cardboard boxes that we now have to keep stocked. What has not increased is my ability to walk around or lift heavy things or climb ladders. If I was interviewing for the dispatcher job today, I would be having to apologise to the interviewers for having wasted their time as several aspects of the job are now beyond my capabilities.

On Friday afternoon, about halfway through my shift, I was called out of the packing room and into the boss's office. I was then asked to look for another job as the changed dispatch role was no longer suitable for me.

I was promised a fantastic reference but told that there were no roles available within the company that might be more suitable for me, and that it wasn't fair to the other dispatchers if I was doing all the less physically demanding parts of the job. I was thanked for all my hard work.

Head spinning with shock, I offered that I could learn to do just about anything, or I could ask an Access to Work Occupational Therapist to come in and see if any further adjustments could be made... but their minds were made up. Hard work, much appreciated, excellent worker, no complaints, glowing reference, not being given notice as such, but role no longer appropriate, please seek alternative employment soonest.

As an employer of a PA, I'm quite certain that for a conversation like that an employee is supposed to be advised in writing at least 48 hours beforehand and told they're allowed a representative with them. However it will surprise no one that instead of imperiously standing up and berating them for this laxity of procedure, I whimpered that I understood and asked if I could be excused to go and sit by myself for a few minutes to get my head around things.

But there's only so long you can spend sniffling in the Ladies loo and of course I can't independently leave the building - I need to wait for my taxi to turn up. So I went and packaged CDs for another hour and a half. What else could I do?


I could get signed off sick, as it is my poor health that means I cannot manage the changed job role. However, this means I would also have to stop doing my second job as well, and would screw up my lower-than-average sick-day record which would have an impact on my future employability. Also, just the thought of trying to deal with ESA makes me feel sick.

I could find another job, suitable for my abilities, with hours that suit me, that pays more than benefits rate and is prepared to take on a disabled person. In a recession, in a town where this week the paper reported there are six Jobseekers (ie healthy people on JSA) for every vacancy listed at the Jobcentre. Hahahahaha.

I could keep working until such time as they do actually outright fire me. However it is an understatement to say that since the "discussion" I have now lost the sense of loyalty and motivation that was making me put myself in more and more pain and swallow more and more drugs to try and keep up with my job.

So I took the initiative and on Tuesday, I resigned.

Dignity and self-respect more or less intact, a certain amount of annual leave to use up during my notice period, they don't have to try and accommodate me any more, and I don't have the unpleasantness of trying to work at a place I know wants me gone.

Once I finish my notice and have my P45, then I'll also technically resign my second job and set up as a self-employed person. I'll continue doing the second job, but instead of submitting a timesheet and having my employer do the PAYE thing, I'll invoice my employer for the hours worked and pay my own tax and NI. My earnings will be very low, but Steve has agreed to support me while I look for another "main" job so that I don't half-kill myself doing Christmas temping.

If anyone who reads this does the self-employed thing and can recommend a person or organisation that can do a bit of hand-holding when I do my first tax return, that would be appreciated.

Wednesday, October 21, 2009


As per the plan I detailed last time, today my PA and I set off for the local Citizen's Advice Bureau, to see about getting help with the DLA forms.

The CAB is at the end of a long terrace of gorgeous Regency houses that have been converted into offices. In other words, steps all over the place, mostly without so much as a handrail. But charity sector and public sector buildings tend to do much better on access than private sector businesses, and as such there is an outdoor lift at the side of the CAB's building. Hurrah! At exactly 10am, which is when they open, we rolled up to the lift-gate, read the instructions, and twisted the red gate-release button. Nothing. Pressed and twisted the red button. Nothing. Pressed the lift-call button to make sure the lift was properly down (often they won't open unless they're right at ground level). Nothing.

Feeling incredibly fortunate to have a PA, I sent her to the top of the stairs to see if it worked at the top (or to put it another way, "is this thing on?"). Yes, the lift call button at the top worked, the lift rose majestically, and the gate at the top opened. Now that the lift was up, my call-button at the bottom worked to make it come down again... but would the red gate-release button release the gate? Would it hell.

Okay, never mind. I asked my PA to go inside and see if she could find a staff member who would come out and either (a) say "ah yes, we know that button is broken and this is how we deal with it," or alternatively, (b) take my details and arrange an appointment at a different building without me having to physically go into the CAB.


What we got was a staff member who assumed my PA was on about a child in a pushchair and who looked horrified when she saw me sitting there. I sat in the cold, damp alley and shivered while she went through all the button-pressing sequences we had, to no avail, and went back inside to ask for help.

So then there were three different staff members milling about outside. Volunteer One was standing at the top of the stairs, ineffectually musing about how they'd had the lift repaired only a couple of weeks ago and wasn't it awful, you would think an outdoor lift would work outdoors, the whole thing was a big waste of money. Volunteer Two, after a few minutes, decided to give up on the lift, apologised to me, and asked if I'd mind awfully if she took my details outside and then she'd arrange for a referral to a specialist advisor who would phone me to make an appointment. I'd have been happy enough with that, but then the third staff member, who'd been raising and lowering and prodding and rattling the lift, made a triumphant sound and opened the bottom gate. And they all looked at me, expectantly, and my PA and I looked at each other, in horror.

See, stranded at the bottom of the stairs with a non-functional lift is not too much of a problem. You are effectively locked out of the building, but you can cut your losses and get from where you are to just about anywhere else - including your car and your house. Stranded at the top is a different matter entirely. You are effectively locked in and can't go anywhere.

Did we trust this lift to not only get us safely to the top, but also to deliver us back to the bottom and let us out again?

Well, no, not really, but three volunteers, none of whom were dressed for being outdoors in October, were standing around waiting for us to embark - one with a very pleased grin at his success in opening the gate - and I wasn't up to an argument. We rolled on and did our best not to wince as the gate clanged shut behind us.

Now, to be fair, once we were inside the building everything went marvellously well. Since I'd already explained my situation and had a certain amount of advice from Volunteer Two, I didn't have to queue behind all the people who'd walked in while I was sitting at the bottom of the lift, she just carried on sorting out the referral as she would have done if I was still outdoors. It was arranged that an outreach worker specialising in disability would call me in the afternoon to arrange an appointment at a rather more accessible premises that also happens to be nearer to my end of town. Pleased with this, we left.

Or tried to. Because, unsurprisingly, the bottom gate refused to open, and this time, we were on the wrong side of it.

Now, I'm going to take a moment to describe this lift. An effort - a very creditable effort - has been made to make it fit in with the surrounding architecture. Or to put it another way, the safety barrier all around the lift is five-foot-tall black iron spiky railings, to match the ones adorning the other houses. However, it is difficult to feel the proper appreciation for such attractive and thoughtful design when you are trapped inside it and staring out through bars getting gently drizzled on, while a couple more volunteers, neither of whom were present at the original effort to open the bottom gate, poke and prod and make useful observations such as the fact the top gate opens.

This in turn made us late (not to mention cold, bedraggled and miserable) for the Social Services meeting, but at least we had a good excuse.

Monday, October 19, 2009


Following on from my previous post, I was not successful in contacting the Citizen's Advice Bureau this evening as per the advice on the front page of the DLA form.

We're not talking about getting the form filled out for me, or anything. We're talking about getting through to a receptionist of some sort to try and make an appointment to get some "proper" advice at a later date. Or possibly to ask if there's a different local organisation I could approach for help.

I got home from work and started playing the redial game right up until 7pm when the line closes. All I got was a 'busy' tone.

They're closed all tomorrow, so I'll try again on Wednesday - might get my PA to take me to their office in town, although I can't play their "sit in reception until someone's available" game as I have one of those previously mentioned Social Services meetings to attend halfway through the day.

Like I said before, it's not the fault of the volunteer-staffed, underfunded CAB. But I think it's bloody cheeky of the DWP to advise me that for help with their bureaucracy, I need to access a service that is so flooded with demand that I can't even get through to speak to a receptionist on the phone.

Saturday, October 17, 2009

And then the rain came down

Things have suddenly become Busy here in the land of Mary. Let's see, where were we up to...

The Second Job has started and is going well. Access to Work agreed that I should have an ergonomic keyboard and mouse, which I bought and they should be refunding at the end of this month. I also explained about how I would be mostly working at home but would occasionally need transport to go to what you might call Company Headquarters, in order to be shown how to do things, or given materials to work with, or to speak to my manager in person. So instead of being approved for "up to 10 journeys a week" (eg five trips To and five trips From work) like I am for my main job, I've been approved for "up to 104 journeys a year", which on average is a To and a From each week, but acknowledges that my working pattern is very, very flexible.

I had a second attempt at the chocolate cornflake cakes, this time using proper dark cooking chocolate. It worked much better than my Galaxy/cocoa powder/water combination. I'd show you a picture, but we ate most of them at knitting night. It probably would have been all of them but we felt we should save one or two for Steve. I would like to thank the ladies for sincerely congratulating me on my achievement without any sniggering.

I got my Direct Payments Monitoring Return completed and sent off. The stamped printout of the transactions for the period covered by the missing statement never did arrive - no idea whether that's the fault of the bank, or the fault of the Royal Mail, although I know which I think is more likely - so instead I made copies of the wage slip and BACS slip for that month and added a post-it note explaining that the statement was lost in the post, but this is what went in and out of the account and look, it tallies up with the end balance on the previous statement and the start balance on the next one. I'm sure they'll contact me if that isn't good enough.

So yeah, all in all I was feeling pretty proud of myself for keeping on top of it all and having everything ticking over.

And then the rain came down.

In among the self-perpetuating drizzle of increased pain levels because of the damp and cold, and grottiness because of increased painkiller side-effects, and getting frustrated and stressed because the grottiness makes it hard to think and the pain makes it hard for me to move so I can't DO things, and extra pain because the stress makes me tense, round and round and round, are a couple of real thunderclouds.

Firstly, my PA told me of a couple of issues that may affect her ability to work for me. I respect her confidentiality as I expect her to respect mine, so all I'll say on that front is: she's a great PA, I'm happy employing her, she's happy working for me, and it isn't anything that either of us have "done wrong", it's just one of those things. But what I can say is that, as an employer, I'm having to increase the gradient of my learning curve to perilously steep levels in order to keep up with what our respective rights and responsibilities are in this situation. I'm also having to spend a few extra hours on the phone and having meetings during the daytime, which interferes with my ability to save enough spoons for work.

Secondly, it's DLA time again. The form is a new one - shaved down to 40 pages of personal and depressing questions rather than the 50+ it was previously - but from what I can see, this has mostly been achieved by trimming down the spaces given for the non-tick-box questions. For instance, the question about help needed to take part in "hobbies, interests, social or religious activities" used to be close on three pages. Now, they provide two 5cmx16cm boxes, one for activities at home, one for activities when you go out. Which I guess is more than adequate if you don't need much help, but if you don't need much help, why would you be applying for DLA?

So Monday evening will be spent trying to contact the Citizens Advice Bureau by telephone (the local CAB is only manned four days a week, for five hours at a time, most of which I am at work). I'm hoping my combination of disability and having a job will be enough for them to allow me to make an appointment. Obviously I'll have to take time off work for such an appointment, but it would still be much better for me than the usual process where you go to the office and sit in the waiting room for however many hours it takes until someone becomes available, and if they don't become available, you come back the next day. It's not the fault of the CAB, who are staffed by volunteers and chronically underfunded for the amount of support they are meant to provide. But it does make it that little bit more inaccessible for those who need it, and it's another thing that shouldn't be soaking up my limited annual leave allowance.

Every time, this makes me angry. Services and support tend to assume a disabled person has an infinite amount of spare time, energy, money, learning capacity, and administrative ability at their fingertips. Get off benefit! Go to work! Squeeze all this crud in on top! How?

Thursday, September 24, 2009

Customer Service

Slightly alarming letter from Social Services today, telling me that my Direct Payments Monitoring Return had been due at the end of July and that if I did not submit it within 14 days I would be in Trouble.

Quick call to the office who sent the letter, turns out it's a form that I have to send in with some bank statements and whatnot, to show that I am properly using the Direct Payments money. They sent it to me at the beginning of June. It didn't arrive. Happily, they believed me that it didn't arrive and are going to send another copy.

Much relieved, I decided to pull out my big Social Services folder (when you have brainfog but have to deal with reams of paperwork for government organisations, you develop excellent administrative habits) to make sure that I had all the bank statements and timesheets and suchlike to hand. I felt happy and confident in my filing system - all the bits of paper were grouped together in their little sections, and in date order within those sections - when I spotted alarm bell number two. One of the statements was missing. The one that would have been sent at... can you guess?... the beginning of June.

I'm not even going to bother with a rant about Royal Mail. There is a persistent problem here with mail (particularly birthday cards) not arriving, packages being left unattended on the doorstep, you name it, and all we ever get told is that nothing can or will be done unless the item of mail was sent by a Signed For or Special Delivery service and we are able to get the sender to provide the receipt for this service.

What I am going to do, is praise the customer service of the bank. I phoned the local branch. A person picked up within a few rings, no automated system. The person spoke good English and offered me two options - I could have a printout of the transactions for the missing period sent for free, or I could have a duplicate statement sent, but that would cost £5. I explained what I needed it for and asked what she thought I should do. She offered that she could send the printout, free, but stamp it with the bank stamp and the date stamp, and then if Social Services said that wasn't good enough, then I could pay the fee and get a 'proper' statement. Whole conversation took less than five minutes. Hurrah.

Wednesday, September 23, 2009

Assisted Suicide

I've tried to stay more or less out of this one, but today brought the news that the law on assisted suicide has been 'clarified', although the level of that clarification is slightly unclear and seems to consist mainly of a list of factors that will be taken into consideration when deciding whether or not to prosecute.

Firstly, let's remember we're talking about assisted suicide, assisting and enabling people to kill themselves. We are not talking about euthanasia, which is actually doing the killing. Big difference.

Secondly, let me state for the record that I am NOT suicidal and have no intentions to kill myself or enlist others to do the job for me. I have reasons to get up in the morning and am looking forward to tomorrow, next week, next year and beyond.

However, I can understand why some people might want to kill themselves, and how it is possible that they can feel this way with a mindset of 'calm and rational' as opposed to 'agitated and desperate'.

I can also understand that on a practical level it is a difficult thing to actually physically do and succeed with if you are impaired in some way. You need to be sure that your chosen method will be effective, and that you will not be thwarted by a lack of physical strength, or an inability to get hold of the necessary materials, or by a carer calling for an ambulance instead of allowing you to get on with it. A failed suicide attempt is in many ways worse than a successful one, as you have to continue to live with not only the factors which made you feel suicidal, but also the shame and frustration of failure, not to mention any additional impairments caused by the attempt.

So I understand that, since you'll need help, you want to be sure that those close to you won't be prosecuted for allowing and enabling your suicide - although I draw the line at anyone else actually carrying out the act.

But. Any kind of blanket law saying "this is legal, that is not legal" wouldn't work. It would be open to too much abuse. Which is why, although today's clarification seems at first glance to just be a fudge, I quite like the way they've done it.

Partly because there are so many different situations, so many factors, so many shades of grey. There needs to still be case-by-case consideration.

But mostly because it forces people to take the risk of prosecution, and therefore forces them to think really, really carefully about whether it is a risk worth taking.

You see, it's a big and serious undertaking, to help somebody to end their life - or indeed to ask for that help. It should never be a quick decision. It should not be taken lightly.

If, as an incurably ill and suicidal person, you know that there is a risk that your loved ones may be prosecuted for helping you, you'll think long and hard before ever bringing it up. If, as a loved one, you know there's a risk you may be prosecuted, you'll think long and hard before agreeing to take that risk. If, despite the risk, you both go ahead anyway, then it demonstrates how important you think the issue is.

If the suicidal person and their helper look at today's guidelines and, for example, rewrite the Will to ensure that the assistant does not stand to financially gain from the death (and remember that in many cases the assistant is the next of kin and most likely to gain, that's a big something to give up) then that also helps to demonstrate that they have both seriously considered the issue, the outcome, and what is most important.

I think forcing this kind of consideration helps.

I still don't like the idea and I still don't think it's one I'd go for myself, but the way they've gone about the clarification makes a sort of sense to me.

Sunday, September 20, 2009

Fantastic Mr Fox

Last night, Steve and I went with some friends to see Cloudy With A Chance Of Meatballs. Synopsis in a can: amateur scientist invents machine that makes food from water, greed, lack of forethought, it all goes horribly wrong, amateur scientist and friends discover hidden depths to save world. It was predictable, with all the family-values schmaltz and barely disguised moralising that you have to expect from a kids' movie. But nevertheless it was fun, with lots of gags, silliness, and bits that fly over the heads of the kiddies in the audience while making the adults choke on their popcorn. All the nerds and geeks will feel their toes curl as they empathise with Flint (even while they shout at the screen about the dodgy science and how water doesn't have a "genetic code" - remember guys, it's a kids movie), and there are no prizes for identifying the charcter voiced by Mr T.

But the thing that is still bugging my brain today is one of the trailers, for a film version of Roald Dahl's Fantastic Mr Fox. There are many things you can say about Roald Dahl, but "his writing is really compatible with predictable Hollywood formula" is not one of them. He was a dark genius, and the glory of his writing is that it is often highly disturbing and that the "winner" is not necessarily "the good guy".

What I recall of the storyline of Fantastic Mr Fox is: a family of foxes who steal their food from nearby farmers find themselves in trouble, when the farmers decide they've had enough and start to take some extreme pest control measures. But with skill and daring, Mr Fox manages to not only evade the farmers, but finds a way to steal even more food than he was stealing before, enabling all the vermin in the surrounding area to "eat like kings" for the rest of their lives. With the notable exception of the Rat who lives in the cider cellar, who Mr Fox and Badger, big bullies that they are, threaten to eat if he attempts to stop them stealing the booze for their party.

Mr Fox is not and does not claim to be anything other than a thief. That the farmers are upset by the constant thefts from the businesses that are their livelihood is quite understandable. However the reader is encouraged to be firmly on the side of the criminals, and against the farmers who are protecting their property. Where's the moral? Who knows? It's quite likely there isn't one. Dahl never claimed to be guiding or educating children - in fact he quite liked the idea that he might be just a little bit corruptive, a little bit wicked.

However I can't see a celebration of breaking rules for purely personal gain cutting the mustard with a Hollywood focus group. There must have been changes, and big changes at that.

Which makes me wonder. Do I go and see it, because I am a Dahl fan and it is a film version of one of his books? Or do I avoid it like the plague, because I am a Dahl fan and I don't want to see his work smashed to pieces with a saccharine hammer?

Wednesday, September 09, 2009

Second Job

Yes, that's right, in these darkened times when there are many more jobseekers than jobs available, I'm being a greedy git and deciding to have TWO at once.

Okay, so they're both part time - the existing one at 17.5 hours a week and the new one at somewhere between "a couple" and "a few" hours - and even the combined pay wouldn't be enough to lift anyone without financial support from a partner out of benefits dependency - but nevertheless.

As you've probably guessed, precise details are at a hazy stage with a start date of "once the paperwork's done", but I've filled in my bit of a P46 and been shown around the system I'll be using so I don't think I'm jumping the gun in considering the job to be a definite thing.

It's very flexible and it's mostly working from home, data entry and envelope stuffing and suchlike, which is why I'm able to take it on. There's no way I could do more hours in my main job, since by the time I crawl into my taxi at the end of an afternoon I am utterly shattered, barely capable of talking, and wincing at every pothole and speedbump on the way home. But the idea with the new job is that once I've got home and had a couple of hours to rest and get a bit of dinner inside me, then if I feel up to it I'll be able to sit up and do anything between twenty minutes and two hours of additional work. And if I don't feel up to it, or if I have something else to do, then I won't. I can stop the clock for a break whenever I need to, and I can take that break in the quiet and comfort of my own home which is so much more effective than trying to screen out the noise and busy-ness of a hectic office. I won't have to force myself to keep going until a taxi arrives, either, which will be nice.

Of course, the first person I called to tell was my mother... of course, her immediate reaction was a comparison to Sister Dearest and her Fabulous Career*. Admittedly I know by now that any phone call to my mother has to include several minutes listening to the praises of SD and her FC being sung, but on this one occasion I really could have done without it - I wanted to play the game where we at least pretend to be proud/congratulatory/encouraging of my hard work and minor accomplishments.

Happily, Steve and my friends are more than capable of bolstering my self esteem when it flags and did a sterling job of being pleased for me. Even my current boss congratulated me, once I'd assured him that it was a second job and I wouldn't be leaving his company (his immediate reaction in the seconds before I'd fully explained that bit thoroughly reassured me that I am valued within the workplace).

I've got a desk set up at home now, complete with two desk tidys, a coaster, and my Sunshine Buddy. I have a wireless mouse but I need a mousemat as it's a glass-topped desk. Well, I say need, it's possible to get by just using a bit of paper. But I'd like a proper mousemat. In fact in an ideal world, I'd like to try one of those ones with a padded bit for your wrist but they seem a bit pricey and I'm not sure how much difference they make. If anyone has any input I'll be happy to hear it.

Access to Work are being their usual cagey selves - you can't determine what help you may or may not be able to get through them until you're fully signed up to the job, have a start date, and have completed an application for support - but I've been told that I am "eligible to apply" for support with this job as well, and have two separate support packages running concurrently, although they'll probably be handled by the same person. I'm hoping to get the same deal on transport (I'll be working from home but I will have to go in every so often) where I pay an amount equivalent to a bus fare, and AtW top it up to a taxi fare because I can't use a bus. Equipment-wise, I'll need to have a good think - as a rule, they'll provide anything that is (a) to be used solely by me, AND (b) an item or a specific version of an item needed because of disability-related reasons. So for instance they won't supply biros but they might supply any of these for someone who has trouble with their hands. Ideas?

* Fabulous Career = working for several large national chains of bookies, encouraging gambling addicts to indulge their addictive behaviour. Since she falls in the narrow margin where she can write her own name but is unable/disinclined to get a different job, she has over the course of several years worked her way up to local management. While I realise I'm hardly a high-flyer myself, I can't get quite as excited and impressed by this as my mother seems to.

Sunday, August 23, 2009

Not the WI

Not a great success.
Originally uploaded by girl_of_bats
Today I decided to make chocolate cornflake cakes, having in my kitchen both a box of cornflakes and a packet of chocolate bars that were getting dusty because no one fancied eating them.

Turns out, it IS possible to balls-up chocolate cornflake cakes. Who knew?

Things to remember for next time:

  • Don't use snack bars of Galaxy and expect them to behave the same way as cooking chocolate.

  • Don't look at the semi-molten, unappetisingly pale brown mess and decide that it's a good idea to add cocoa.

  • Don't look at the consistency of your now dark-brown mess and decide that the best way to make it runnier will be to add a bit of water.

With a nod and a grin to Carie, multi-prize winner at her village show and a marvellous friend despite being my polar opposite in so many ways.

Thursday, August 06, 2009

DLA and AA under threat

Yesterday Benefits and Work released some rather alarming news about the proposed axing of "disability benefits", such as DLA and AA. To bring all readers up to speed:

DLA is Disability Living Allowance. This is money paid to disabled people to help cover the additional living costs they face due to disability. It has a Mobility component and a Care component. These are paid at fixed rates (high or low rate Mobility, and high, middle, or low rate Care).

AA is Attendance Allowance. This is sort of like DLA for people over 65, but it is not split into care and mobility - there's just a single high or low rate.

Neither benefit is means-tested for the simple reason that being disabled is expensive regardless of what other income you have. If you work your backside off and earn £20k, you deserve to be able to live the life of someone earning £20k - not to be struggling along in the lifestyle of someone on £12k because you have to shell out a small fortune for absolutely essential, non-negotiable disability expenses. You shouldn't be rendered ineligible for help with these essential expenses because you've had the gall to do things like get a mortgage to buy a house, or put a bit of money in an ISA for a rainy day, rather than spending all your money as it comes in.

Neither benefit is counted as income for means-tested benefit assessments, because the money is given because of additional disability-related expenses, the sort of things where the individual can't choose to save a bit of money by going without.

No one is immune from disability or old age. These issues might not affect you today, but chances are they will affect you at some point, particularly if you plan to live past 65.

All up to speed? Then I'll continue.

The reason DLA and AA are given as money and don't require receipts and suchlike to prove how the money was spent, is because of the huge diversity of disabilities and living conditions it covers, and because the expenses don't always work out that neatly.

Let's explore an example: grocery shopping. I have to pay more for my grocery shopping than an able-bodied person.

First of all, I have to pay for home delivery. I rarely have the spoons to manage to get all the way around a busy, bright, noisy, complicated supermarket, even with a mobility scooter - much less to then be able to get myself and my shopping home, and then immediately put it all away as well. To someone with a condition that makes moving about painful, who has difficulty lifting and carrying, who becomes tired very quickly, or who is easily confused, that's a triathlon.

Second, I have to pay to be able to access home delivery. That means an internet connection and a usable computer, repairs and replacements as necessary. Of course I use the internet and the computer for all sorts of things, essential and otherwise. How on earth would we calculate how much of it is a disability-related expense?

Third, I cannot save money on shopping around. Home delivery usually has a minimum spend. Every week, leaflets of special offers from the main supermarkets come through my door, but I don't have an option to get £10 of food from ASDA and £10 from Tesco and £15 from Sainsburys. I have to pick one shop. I cannot pick the cheapest shops, such as Aldi or Lidl, because they do not deliver.

Fourth, shopping online I cannot take advantage of the "benefits buffet", the items that have been reduced in price in-store because they're almost out of date, or because the packaging's been a bit squashed. It used to be a core money-saver - on my walk home from work, I'd wander into the supermarket and pick up something half-price for that night's dinner...

I had typed as far as my ninth point before I realised I'd gone a bit off course and deleted most of it. Hopefully I've demonstrated my point: disability-related expenses crop up in unusual ways and aren't always possible to calculate - which is why getting DLA or AA in the form of extra money to be spent at the claimants' discretion is utterly invaluable.

The Shaping the Future of Care Green Paper published by the DWP and the Department of Health on 14th July sets out government plans to get rid of attendance allowance and, depending on public reaction, also leaves the way clear to end the care component of DLA.

This will Not Be A Good Thing.

Worse, they intend to give the funding and responsibility to Social Services instead. The examples of Social Services that are unable to find their backsides with both hands and a map are myriad, but even if we were to grant them the impossible benefit of the doubt and assume that they ran it fairly and smoothly... this change can only mean less autonomy and more paperwork for elderly and disabled people who are not always in a position to be able to deal with it, as they attempt to document and justify every disability-related expense that the local authority will permit (and struggle with the ones they won't acknowledge).

Please, join the campaign at Benefits and Work.

Wednesday, August 05, 2009


Wednesday is my day off, but today, it really doesn't feel like one.

What I'm about to say is going to sound really daft...

Today I have 3 hours of social activity with my PA and you know what? I almost wish I didn't.

Anybody from Social Services reading this, I said almost, and I'm only referring to today...

You see, I have nothing to do.

Steve and I seem to have some sort of bug or whatever and we're both feeling more run-down than usual. I had to go home early from work on Monday and went straight to bed and stayed there. With an effort, I managed work and knitting on Tuesday, but now I'm really shattered and all I want to do is just crawl back into bed and stay put. This removes all of the more physical activities I might engage in during my three hours of PA time like swimming or bowling.

The weather is miserable, so that removes the outdoorsy activities I enjoy like going for a wander-about in this or that park, maybe having a bit of a picnic somewhere pretty, very enjoyable things even when energy is low that just aren't fun when it's persisting it down.

I tried museums and art galleries but I guess I'm just not that sort of person. I do my best to find it interesting and make dutiful comments about how fascinating it is to find out about (insert museum speciality here) but seriously, I'm either falling asleep, or I'm getting a headache from trying to stoke up an interest and absorb tons of information about something that simply doesn't interest me. It's a bit different when I'm with Steve, because he can get excited about the engineering involved, or at the very least, find stuff to photograph in beautiful or unusual ways, and I can watch him.

I have enough library books to last several weeks, and there's nothing at all that I need to shop for.

As Steve isn't currently working, there aren't any out-and-about jobs that I should be taking care of, because he's tackling that sort of thing as it crops up. Which is great, and I am a million flavours of NOT complaining, but at least when I know I have to post a letter or buy a birthday card or something, it gives me the start of the roll of sticky tape.

Also as Steve isn't currently working, and as I've just splurged a month's worth of my own wages on this shiny new laptop (which I have been slowly getting used to since last night), it's not a good time to head to a shopping mall and spend money on things that I really don't need just for the sake of filling up some time.

But I have these three hours and although there's some flexibility, over the course of a month, my PA is supposed to do and get paid for a minimum of the regular approved number of hours.

So I'm sitting here, really not wanting to DO anything, yet trying to think of some sort of activity to occupy myself and my PA. I feel like I'm obliged to come up with some form of entertainment despite only wanting to sleep. I feel like it's a job.

All I've come up with so far is trying to find a nice cafe and sitting there drinking tea and eating cake and knitting or reading or something. But then I feel like I'm wasting the hours I've been allotted.

Saturday, August 01, 2009

Why it's a really good idea to have a geographical number

After spending a couple of hours last night looking at different sorts of laptops (including Alienware - hardware: wow, prices: eep!), Steve and I had narrowed the choices down to five reasonable options that more-or-less met my criteria and budget. So this morning, after the First Cup Of Tea but before the actual Getting Up process, we fired up his eeePC to have a fresh look at these options and see if I could choose which one I wanted.

Eventually we settled on an Acer Aspire 5738, one of the younger cousins of my current (unwell) Acer Aspire 5500. Despite the reduced price offer on laptopsdirect, it was a bit over my ideal budget, but had all my need/want features and looked like it would have the longest to run before it became obsolete.

However, there appeared to have been a data entry error on the technical specs. In one place, it said it had 3GB of RAM. In another place, it said it had 2GB of RAM comprising 1x1GB and 1x2GB, and while I know my maths won't win any prizes, even I can spot the problem there. And then, it encouraged us to phone them and ask about the "double memory offer" which would bring it up to 4GB...

Still, data entry errors happen, so I figured the best thing to do would be to phone and ask for the correct information - and then, depending on whether or not I liked the answers, buy it or start looking at the second-favourite.

Problem. The number to phone about the memory offer was an 0844, and the main site number was 0871, and at the moment Steve and I only have mobile phones available, and these non-geographical numbers are expensive for us to call and don't get included in our "free" minutes. The Contact Us page gave a company address and named the business not as laptopsdirect, but as BuyitDirect. So we googled them, hoping to turn up a geographical number for the business address (yes, I know, Say No To 0870, but their site confuses me, not least because the google ads look like site links).

Instead, we found a series of accounts of failure and f*ckwittery that made us certain of exactly one thing - we weren't going to be giving them any money any time soon.

I'll cheerfully admit to my own laziness/incompetence/impatience when I'm buying new kit while still in bed on a Saturday morning - if there had been a geographical phone number on the site, I wouldn't have bothered digging for information about the company, and thus wouldn't have found all the negative reviews. I'd have rung them up, cleared up the RAM issue, ordered a laptop, and given them the details to charge my card for rather more than five hundred of the finest British pounds sterling. Their loss.

There is a happy twist, though.

On a whim, rather than going to the second-choice laptop (which was with a different retailer), we put the complete catalogue number of my preferred laptop into google. And lo, we found the same laptop on SimplyAcer, and not only that, but it was significantly cheaper and brought the whole thing neatly back under budget. The company provided a postal address and a geographical phone number as their main contact details without any messing about, and a link to their parent company gives not only geographical phone number and postal address but also a little map and photographs of their shop premises, handily situated just up the road in Birmingham, so if there are any problems we'll be able to physically go there to sort it all out.

Eagerly awaiting a despatch email now, although not really *expecting* one until at least the beginning of the working week... have I mentioned lately that I love my G1?

Friday, July 31, 2009


This may be the last post I write on this, my trusty laptop that I have had since before I started this blog. As such, I wish to pay it proper tribute.

It wants to be a trusty laptop. I know it does. And it has been a trusty laptop, almost every single day for most of the three-and-a-bit years since I first took it out of the box and cuddled it. It has enabled me to shop, bank, and access services from my own home. It's provided entertainment and information and social contact, and has saved me from feeling completely cut off from the world.

But, time has worn on and three years of heavy use has taken its toll. Files are becoming corrupted, bits are sticking, and the fan is whirring away on overtime even when running nothing heftier than the original OS (Windows XP) and a single firefox window. The last couple of games I looked at buying, I did not meet the system requirements (although one of them I bought anyway, because of a limited-edition offer, and we seemed to more-or-less cope).

For the last few months, it's been 50/50 on whether my poor, overworked laptop will manage to complete the boot process, and over the last few days it has been getting worse still. Disturbing mechanical noises are coming from deep within the machine (although nothing is in there that shouldn't be) and we've reached a point where, in order to persuade it to boot, the operator must use the Etch-A-Sketch method - giving it a good shake and a couple of bangs to try and dislodge/reseat whatever is causing the problem. It pains me to treat my precious laptop so harshly, but we really have reached the point where anything I do to it is unlikely to make it worse. The time when it no longer works At All is unfortunately now within the forseeable future.

So, I'm shopping for a new laptop. I've set a fairly arbitrary budget of £500, as that's what this one cost. My "musts" are a decent size screen, a standard size keyboard, WiFi, and a CD reader. My "wants" are for the CD reader to also write CDs, and read (preferably write) DVDs; the capacity to play Sims 3 if I ever buy it; and the handy little memory-card-slot that enables me to just plug the memory cards from my camera straight in to copy my photos over; plenty of USB ports. I also want it to run Windows, partly because that's what I'm confident using, and partly because I want to be able to play my PC games. Recommendations welcome.

Acquiring new toys is always fun and exciting, but I do feel quite sad at the thought of parting company with this one. I will miss it. I'm not going to bury it in the back garden but the thought did cross my mind. It has been a good companion. Perhaps one day we'll resurrect it as a guest computer or something.

Wednesday, July 22, 2009


I am many, many things, but a culinary wizard is not one of them. Part of that can be placed squarely at the door of chronic illness - the way that "chop one onion" is for me not a quick aside in the flow of a recipe, but a hazardous undertaking that will require a sit down, a rest, and possibly a couple of sticky plasters - but even before I got ill, I would have a good swear at cookery books and online recipes. What is a "ricer"? Why do you assume I have fresh garlic in the house? If I'm "cooking until golden brown", what time should I put the vegetables on? Couldn't you have mentioned that the oven needs pre-heating before the "now put it all in the oven" stage?

So instead, I've focused on perfecting simple dishes. I am pleased to announce my latest accomplishment: Hot Buttered Toast And A Cup Of Tea.

You will need:

for the toast
two slices of Bread
a Butterknife
a Small Plate

for the tea
a Teabag
Milk and Sugar if you want them
a Cup
a Teaspoon

In addition you will require a fridge (or other means of keeping perishable dairy items chilled), a toaster (or other means of toasting bread) and a kettle (or other means of making water boiling hot). And an appropriate power source for these pieces of equipment, although possibly this is getting a little extreme for the planning...

Step One: Make the tea. While I acknowledge and respect the many regional variations on this theme, I tend to go for swilling a bit of hot water around the cup, chucking the water out, then dropping a teabag and two teaspoons of sugar into the cup before almost-filling it with hot water. Give it a stir, let it brew for a minute, then remove the teabag and add a splash of milk. One last stir, and it's done.

Top Tip: throw the water away down the sink, and throw the teabag away into the bin. The other way around doesn't work so well.

Step two: Prepare the butter. Now this is what's usually the problem. Leave butter out of the fridge, it doesn't keep properly, keep it in the fridge, it's rock solid. So what you do is:
  • Remove the butter from the fridge. Put the milk back in, while you're at it. Neatness is a virtue.

  • Using the butterknife, cut two slices of butter from the block, each about 2mm or 3mm thick.

  • Place the slices of butter on the sideplate.

and then the trick at the crux of the whole procedure:
  • Balance the plate on top of the hot cup of tea.

Leave it there for a couple of minutes while toasting your bread. This will be sufficient to warm the butter (so that it's spreadable but not melting) and also to warm the plate (so that your hot toast doesn't become cold toast after being on the plate for ten seconds).

When the toast is done, remove the plate from the top of the cup. Use the butterknife to transfer one warm pat of butter to each slice of toast, and spread. Cut the toast into your preferred shape.

Eat. Drink. Be happy. Leave the marinades to the experts.

Sunday, July 19, 2009

This call is being charged at £2 per minute

Today I woke up and looked through my BBC News twitterfeed to see the headline:

"Patients should be charged £20 to see a GP in a bid to limit demands placed on the health service, a centre-rig.."

Twitter and the 140 character limit. A slightly panicked click-through to the actual story reassures us that there isn't (currently) an intended government policy to charge people £20 for a ten-minute GP's appointment, it's just an idea that a "think tank" called the Social Market Foundation has come up with.

It's pre-9am on a Sunday, I'm still on my first cup of tea, and even so I can think of several things that are wrong with their proposals. Lord knows what this think-tank think they've been doing, but I don't think it was thinking.

First problem: "The group said it would not breach the values of the NHS as charges already applied to dentistry and prescriptions."

Yes, and I can introduce you to people who don't go to the dentist, don't have the necessary dental work done, don't fill their prescriptions, or try things like taking "daily" medications every-other-day, in the name of economy. Generally they end up bouncing on the safety net of emergency care, at an even greater cost to the NHS, once the problem that should have been dealt with in its early stages has been allowed to progress to a much more extreme (and harder/more expensive to deal with) level.

To my mind, charging for essential medical care like this is a breach of the values of the NHS. And just because there's one breach, doesn't mean it's permissible to add a few more.

Second problem: "[David Furness, the author of the report] said "It would get people thinking twice about whether the visit was essential."

Isn't it rather rare to just have one GP's appointment? Most people I know seem to have at least two. There's the first one, where they get told "Have some paracetamol/a bit of a rest/drink more water/make sure you keep it clean/etc, and come back next week if it hasn't cleared up/if it gets worse/if you develop a rash/etc." This is the one where before calling, you say to yourself "is this really bad enough that I need to see a doctor?" and probably the one Mr Furness is thinking about.

But then there's the second one a week later which goes "ah, you're still oozing/wheezing/vomiting, looks like you might be ill after all, let's get you some tests/medications." In an ideal world you'll get prescribed a short course of treatment which resolves the issue and trundle off into the sunset, £40 lighter but perfectly healthy.

Nice idea. However, if you don't get better, there's the third, fourth and fifth appointments, which go "we've got the results of your tests back, and now we need to give you medication/refer you for hospital treatment/send you for more tests/monitor you for a fortnight." Before making these appointments, Mr Furness wants you to think twice about whether it's really essential to carry on trying to establish what's wrong and how to treat it. See previous point about bouncing on the safety net of emergency care and allowing simple, treatable conditions to progress into complex ones.

Third problem: The 250-odd page report crashes my browser after ten minutes, but I did get a chance to double-check on exemptions. Mr Furness feels that instead of "arbitrary" exemptions such as pregnancy or retirement, exemptions from the fees should be based purely on "wealth". He defines "wealthy people" as everyone apart from "children and those receiving tax credits". I could not find any mention of provision for people on other forms of welfare or those on low incomes who are not entitled to or do not claim tax credits. I'm not sure how "children" is any less arbitrary than "pensioners" as a wealth-based category.

The time of my life when I had the most GP's appointments was at the beginning of my illness, when we were trying to figure out what was wrong with me. This makes sense and is not unusual.
This was also, obviously, the time when:
  • My job contract had ended and as I was signed off sick, I was not eligible for an extension or able to apply for other jobs. I therefore had no earned income. This makes sense and is not unusual.

  • As I was not working, I could not claim or receive tax credits. This makes sense and is not unusual.

  • I had not yet been approved to receive any benefits or practical assistance. I therefore had no income at all. This is also not unusual.

I was therefore not exempt, but also not in a position to hand over £20 per GP's appointment, at the time when I needed it most. My situation was not unusual at all. Also, I was ill. It's not the time to be dumping additional financial hardship onto people. This scheme may be designed to discourage the "worried well" from using up resources, but the people it will impact most are the people who are actually sick and in need of healthcare.

But Mr Furness's final, beautiful demonstration of idiocy had to be: "[he] said the think-tank was opposed to fees being levied on any form of emergency care."

The emergency care service has been creaking at the seams for years for various reasons, including the decreased "Out Of Hours" GP cover. Presented with a choice between phoning a free ambulance to come and visit you at home, or going out to attend a £20 GP appointment, what are most people going to do? I suspect that any savings Mr Furness's ideas might make GP-side would be dwarfed by the increased costs of emergency care.

Mind you, then he could get paid to write a report about how it would be a good idea to charge for that, as well.

Saturday, July 11, 2009

Book Review

At the beginning of June, Tom Reynolds of Random Acts of Reality fame released his second book, More Blood, More Sweat and Another Cup of Tea (also known as BST2 for ease of tagging).

I eagerly ripped open the Amazon package, started reading, almost joined gentleman blogger extraordinaire Scaryduck in a typo-spotting spree, and announced my intention of doing a quick review just as soon as I got to the end...

... and suddenly lost more or less all of my ability with words. Seriously. In the last two months Steve's finished working, he's been off on holiday (biking/camping in Scotland), I've been off on holiday (back to Lowestoft to see friends and family), I've finished several knitting projects, I've enjoyed weekly excursions with my PA, been to a couple of parties and generally been living a pleasant and stimulating life, yet all I've managed to blog are a couple of half-baked rambles about my disability-enhanced shopping skillz0rs and a G1 app that I wish existed. I've also had difficulty reading, which is why it's taken me until now to finish BST2.

I'd be ashamed to admit that and probably would have brushed my intent to review under the carpet as "no longer relevant" if it wasn't for the fact that Tom is probably wondering why it has taken me so long to notice that he's been lovely enough to namecheck me in the acknowledgements as one of the regular commenters on his blog, and I'm therefore even more ashamed that I have not in fact been commenting at all since then.

Still. The book is now finished, and a review was promised, and so a review there shall be, half-baked ramble or otherwise.

The first thing about this book is that it's available for free online as well as for cash from Amazon and regular high-street bookshops. I quite like having a tangible copy, myself.

The second thing about this book is that it isn't really a "read it all in one go" kind of book - it's a series of self-contained blogpost-length entries with very little by way of continuity or story arcs. This makes it rubbish as a novel, but fantastic as a book for looking at for ten minutes at a time, while you wait for the bath to run or the oven to preheat. It would also be a good book for the bathroom (insert obligatory joke about soft pages) or to take on holiday, because it doesn't take an hour to "just finish the chapter" or "just see what happened to this person" while someone else is tapping their foot and waiting for you.

It is quite similar in many ways to the first book, as you would expect for an autobiographical account of the same job with the same company by the same person during the same decade. There is a slightly different feel to it though. The first book Tom was quite "angry young man", whereas in this one he seems more cynical, but also more stoical.

That said, if you haven't read the first book or the blog, then odds are you will start to get angry about some of the nonsense that Tom and his colleagues have to deal with day in, day out. I'm sure most of us could put forward a few stories about out-of-touch management, irrelevant targets, and clueless customers, but for most of us, there aren't lives hanging in the balance.

It's not all doom and despair, though. Tom's dry sense of humour provokes more than a few quiet chuckles, and there are plenty of positive encounters, often when least expected. So although you get caught up in the writing and grind your teeth about the morons with the inflated sense of entitlement, you also feel gratified when people's humanity shines through and absolutely jubilant when a life is saved.

Edited 12:08 12/07/09 to update link

Thursday, July 09, 2009

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?