The Help Given To Disabled JSA Claimants

July 15, 2015 - 2 Responses

In the budget last week George Osborne noted that “…those who are placed in the Work-Related
Activity Group (WRAG) receive more money a week than those on Job Seekers Allowance, but get
nothing like the help to find suitable employment…”

He was leading up to the cut in Employment and Support Allowance, and this article does a fantastic
analysis of the problems with that announcement.

But as a disabled JSA claimant I wanted to tell people about this help I’m receiving.

Making The Claim

The first time I claimed the Disability Employment Advisor tried to persuade me to go onto ESA
instead. Perhaps this was her idea of trying to help me but she didn’t explain her reasons and
it felt like she was trying to get rid of me. Since I am genuinely looking for work, I can
meet JSA’s requirements and I don’t want to go through a medical I prefer to be on JSA.

When I made my second claim I was temporarily housebound as I was waiting for a repair to be
done to my wheelchair. Knowing how the Job Centre had never shown willing to do interviews over
the phone in the past when I’d been stuck indoors waiting for a district nurse, I decided to
wait until my chair was repaired before making the claim and asking for back-pay. I explained
the situation but they refused back-pay because they said I should have claimed straight away
and they would have done the interview over the phone.

Accessing the Job Centre

Apparently customers aren’t allowed to use the lift so I meet my advisor on the ground floor.
Not a problem as such, but I do question the purpose of having a lift when those who actually
need it are forbidden to use it.

The Job Centre used to be on the High Street, a location I could safely get to alone when
needed e.g. if PAs were away and I had nobody to cover the precise time of the appointment.

The Centre has now relocated to a place where I need help because I have to cross a busy road which has no dropped kurbs or pedestrian crossing but does have many potholes.

I was once permitted to miss an appointment because snow meant that I couldn’t get my chair
down the street. On the other hand, there has been no flexibility of appointment times or
permission to miss an appointment when:

  • I was stuck indoors waiting for a district nurse to come and change my catheter.
  • For one week in the year my PAs were away and I had nobody to guide me
  • I was waiting for a new wheel to be put on my chair (it having come off in a pothole) so
    couldn’t get out.

Sound familiar? “You should have made your claim earlier. We would have done a telephone

Getting Careers Advice

I’d heard good things about the National Careers Service from a friend and thought speaking to
a Careers Advisor was worth a try. I asked my Jobcentre advisor about getting some advice and
it turned out the Careers Service was based in the same building, yet nobody had even thought
to tell me about it. Having requested it myself, I was then sent a very formal, strict letter
from my Jobcentre advisor saying an appointment had been arranged for me, it was compulsory,
failure to comply would result in no payment e.t.c.

I asked about interview practise and was told they “don’t really do that”. Later a different
advisor did set up a mock interview for me. But this wasn’t an interview for a specific job
and was only confirmed a couple of days beforehand so its usefulness was rather limited. It
turned out not to be a proper mock interview but a chat about my CV and suggestions which
contradicted those of the Careers Advisor. So no help with interviews.

They did give me a huge list of websites to try. Most of them no longer existed or were irrelevant
to me. In any case I’ve found plenty of sites for myself. Lack of jobs to apply for isn’t the
problem. What might help is some more work experience.

Getting Work Experience

I heard about a program giving unemployed disabled people a voluntary work placement and some
training. I asked the Disability Employment Advisor if I could go on it. She hadn’t heard of
it and was too slow in processing the necessary paperwork for me to get support from Access
To Work. So I had to pay for the extra hours of support I needed to get to the workplace out
of my own pocket.

I am shortly to be put onto “The Work Program”.

The Job Centre is a burden to my work search, not a source of support. The success I had, and
hopefully will have again, at finding work was despite their “help”, not because of it.


Back In The Cathing Game

May 18, 2015 - Leave a Response

After seven miserable wet months of continence pads I have a new suprapubic catheter. In October last year I and several carers/nurses/doctors couldn’t get a fresh catheter in at a change and the tract closed. Colchester General were unwilling to admit me (the Urologist said he wasn’t trained to do suprapubics and I should go to outpatients) and I was sent home in a puddle of urine with no pads or pointers on how to get them prescribed. The only thing they were willing to do was put a uretheral catheter in, despite the fact they’ve never worked for me which was the reason for the suprapubic in the first place.

Time passed, operations were cancelled due to lack of beds but now I’m getting on well with my new suprapubic, enjoying all the benefits I had before:

  • Drinking as much as I want to
  • Preventing, being aware of and dealing with urinary tract infections
  • Having intact skin and staying clean
  • Being able to go out wherever and for as long as I want
  • Managing my bladder with minimal help from PAs
  • Being able to enjoy sex

I’m getting the drawbacks too, most of which relate to fear of things going wrong again and the problems caused by clinicians not communicating with me or each other:

  • Will I get blockages again?
  • Will I have a catheter calcified and stuck inside me, lots of different people yanking on it and causing more pain before accepting it needs surgery and refusing to tell me what was wrong with my blood test?
  • Will a nurse try to put a catheter in the wrong place, only stop when I push her away and put the now unsterile catheter into my bladder?

Currently it doesn’t even look like I’ll be getting any help at the first catheter change. I asked the surgeon if I would be referred to the district nurses for the first change and he said he wasn’t sure because, not being a patient, he didn’t know how it worked. I asked the nurses at the hospital and they said I should phone the district nurses. The district nurses won’t put me on their list without say-so from the GP. The GP won’t refer me because the hospital wrote “no formal follow-up” in the discharge letter. They and I are leaving messages with the surgeon’s secretary and nobody is getting back to us. It’s the GP I’m most frustrated with in all of this. They know the date the catheter was put in; everybody knows catheters can’t stay in for ever; can they not therefore take some initiative and refer me to the district nurses for the change? Nobody wants to take responsibility for anything.

Fortunately I have the mobile number of one of the continence team managers. I’m pretty sure she’ll get something sorted as she’s one of the rare individuals willing to take decisive action. I just feel sorry for anyone new to catheterisation trying to deal with all this nonsense.

Still I’d go for a suprapubic catheter over any other solution available to me any day. The pros far outweigh the cons.

Is Co-production Fulfilling Our Hopes?

February 5, 2015 - Leave a Response

When applying for a job recently I needed to talk about co-production. I defined this as the genuine collaboration and mutual respect between disabled people and professionals. I elaborated, but those defining phrases “disabled people” and “professionals” bugged me.

They seemed so inadequate and trivial. They don’t capture the real position of either group or the difficulty and importance of the relationship between them.

I don’t normally spend much time publicly speaking about language in the disability context as I think people generally give it far too much attention to the detriment of attitudes and action. I have preferences about using neutral language and know about debates and history around words like “handicap”, “invalid” e.t.c. I’m interested in why people choose to describe themselves as either “disabled” or “with disabilities”. These are important issues but I think they should largely be confined to internal discussions among disabled people. When we give too much public space to them we allow people to feel like they’re achieving something by reworking leaflets while keeping their attitudes and procedures firmly entrenched.

I finally had my fill of the “correct language” meal when a fellow visually impaired person told me I mustn’t call him, or myself, “visually impaired” because it was offensive. Apparently to say someone is “visually impaired” is to mean they are ugly and the correct term is “sight impaired”.

Actually I suspect saying “visually impaired” might have several meanings, including that the view of someone is blocked, depending on the context. It’s probably all wound up with the subject and the object of the sentence. But I’m no linguist. And anyway – offended? Really? All I can say is if you’ve made it to your thirties as a disabled person and you choose to use your remaining shreds of energy thinking about how such a mundane phrase offends you and preaching at other disabled people to mend their ways, you must be leading a rather limited life and perhaps your concern would be better redirected to that issue.

So it was unusual for me to give so much thought to whether I was using the “right” words when I was discussing co-production. That’s partly because I really wanted the work. But more than that, the co-production endeavour encapsulates so much of what it means to be disabled and to seek fundamental change.

Co-production is the process whereby citizens and decision makers work together, sharing power and knowledge to produce policies and practises. Citizens are involved in designing the policies which affect them and everybody becomes an agent for change instead of purely a service provider or a service user. That’s the idea anyway. You can read more about it on the Social Care Institute for Excellence website.

This has been the whole point of the disability movement – to assert our rights to freedom over our own lives; to build practises which work for us instead of on us and do things with us not to us. If co-production is a culmination of fifty years’ campaigning it’s a radical departure whose participants seem to deserve fuller descriptions than “disabled people” and “professionals” with all the assumptions tied up in those words. Disabled people can be professionals, whether by work role, experience or behaviour. Equally the contributions of professionals who want to be changemakers are much more precious than the sum of their qualifications or job descriptions.

But I mustn’t dwell on this. Words are symbols of our thoughts, envelopes for our emotions, ammunition for our chosen weapons. They’re nothing without our directorship. Is co-production the answer it’s supposed to be? Is it a new direction? Or a new label for the old structures?

Like many others I’ve worked to get more choice and control for disabled people. I’ve also had “choice” and “control” thrown back at me as justifications for cutting my support hours. More than once I’ve been informed that keeping my support at the same level would reduce my choice and control and prevent me from living independently.

That was the professional assessment. And that’s one example of why, on the occasions when co-production does live up to its name, it can be an important vehicle for change. If the people who have the power to cut care and those who live the consequences of those cuts can produce work together which they both find satisfying, that’s got to be some kind of progress.

The co-production I’ve been part of was a bumpy ride and it was always going to be. I’ll try my best to ensure that whatever I’m involved in next lives up to its name. If that’s too ambitious, I at least hope to prevent co-production chasing choice and control down the hill of misappropriation.

I’d be really interested to hear about other people’s experiences of working in co-production.

Simply Wow! And How?

November 28, 2014 - Leave a Response

What a wonderful time I was treated to on Sunday afternoon. In exchange for nothing more than a ten minute walk along the soggy streets of Colchester and a donation at the church door, I got to hear some amazing and moving music played by an incredible and approachable pianist.

This performance of his Music In Remembrance program was the first time I’d heard Nicholas McCarthy. He’s a one handed pianist, and to my ears he made the concept of two handed piano playing seem like the concept of three handed shoelace tying: somewhat alien and of questionable purpose. Within seconds, he transformed the instrument into something which is meant for, and always has been meant for, one hand.

Moreover he comes across as welcoming and passionate about the music. He gave every piece an interesting introductions and stayed around for anyone who wanted to chat afterwards. I have a young and developing interest in classical music (and in one handed piano playing as it goes) – and I couldn’t have found better evidence that the genre needn’t be stuffy or elitist.

My personal favourites were Nimrod (which I’ve never heard on the piano before); Ave Maria (beautiful); and Der Erlk├Ânig (dark, powerful and extremely difficult to play).

All in all a dazzling experience. I heartily look forward to more.

Seeking Dehydration Inspiration

March 31, 2014 - Leave a Response

I used some gift money to buya food dehydrator. Curiosity and fun aside, I hope this will give me useful, tasty ingredients and help me reduce waste.

I’ve been reading “Made At Home: Curing and Smoking: from Dry Curing to Air Curing and Hot Smoking to Cold Smoking” by Dick Strawbridge and James Strawbridge.
I used the book’s guidelines on salting, amount of salt to water e.t.c. to brine my beef before roasting. It tasted great but I can’t be sure whether that was because of the good quality meat, the brining or the fact that I used a thermometer to check doneness for the first time.

In any case I’d like to try some of the other methods discussed in the book such as air drying. This is where the dehydrator might come in. The book only makes brief mention of food dehydrators:

“…A more controlled way to air dry indoors is to buy an electric dehydrator or food dryer. Both appliances will speed up the natural process of moisture being drawn out of your produce. The fact that they are controllable means you can predict when your food is done, which is a significant advantage compared to letting the natural flow of air do the drying. These specialist gadgets create the perfect environment for drying. With internal ventilation and the ability to adjust the temperature they are great for meat and vegetables…”

So dehydrators are a controlled way of doing air drying indoors. But surely the two methods are not interchangeable because, apart from anything else, a ham, for example, would not fit on one of the dehydrator’s trays. I’ve also heard of people trying to make chorizo in dehydrators and it just not being right.

So forget air drying large pieces of meat. I just want to preserve smaller items for snacking and convenient cooking.

So far I’ve dried onions, mushrooms and tomatoes. The onions and mushrooms are great rehydrated and added to pasta or jacket potatoes. I haven’t tried the tomatoes yet and am worried I over-dried them.

I’m in need of inspiration to reassure myself that I haven’t bought an over-priced plate-warmer.

I still want to discover:

  • Which foods do or don’t dehydrate well.
  • Recipes for marinades/pickle (I don’t trust the one in the manual because it refers to “big spoons” – how precise).
  • In what circumstances, if any, can meat and fish be dried raw.
  • Which temperatures are best for which foods.
  • What’s the relationship between curing, air drying, dehydrator use, temperature, P.H. and bacteria control.
  • How to tell when dehydration is sufficient.

Crispy tomatoes anyone?

Catching Up on Ten Years of TV

March 1, 2012 - One Response

Now that I have a desk I can get under properly and plenty of space on it, I decided to get the TV out of the spare room and put it where I can actually watch it. It’s been about ten years since I last watched TV on anything like a regular basis, and it wasn’t often then.

Most of the programs I’ve found during my flicking fall into four categories:
1. Property finding.
2. Selling antiques and gubbins.
3. Cooking.
4. Being perfect.

Don’t get me wrong – of course there are soaps, dramas, comedies and documentaries around as well. But the big four seem to be the dominating flavour and weren’t so virulent last time I switched on.

I pass by the property ones, unlikely as I am to ever be able to buy or sell it. The antiques and paraphernalia are sometimes intriguing and enjoyable. The cooking gets my interest though it can be tricky when I am trying to lose weight and hear about some extravagant gorgeous sounding dish concocted by someone on Come Dine With Me.

But it’s the perfectionist piffle which really irritates me. I mean the kinds of programs where they ask strangers how attractive someone is and “pod” dooms them for evermore if they don’t make the grade; overweight people suffer the collective bitchiness of the others in the group if they don’t meet today’s shedding target. And in between they’ll blast you with ads for miracle products to make your house more sterile than an operating theatre, your face the most beautiful and town and every aspect of your life saved from the big bad world by the perfect insurance policy.

This is nothing new but TV in general does seem to have a more preachy, competitive feel to it than when I last watched. Most people are probably acclimatised to this but I am beginning to wonder whether I should have left the TV buried in the spare room.

The Snails Are Back

July 20, 2011 - 3 Responses

Snails and slugs have reportedly been less of a problem for gardeners this year. A couple of months ago on Gardeners’ Question Time someone from the RHS was saying their members had experienced fewer problems from slugs and snails, probably due to a dry Spring.

Well this had been the case on my patio until recently. But when I went to examine my broad beans one Sunday evening I found one of the foul cr’eatures eating its way through a leaf. I flung it across the patio and then felt slightly guilty. The peas have been destroyed – I should have noticed earlier. It’s amazing how quickly the snails can cause havoc.
Peas plants eaten by snails

So it’s out with the pellets and Slug Gone mulch. I’ve also put copper rings around a few of the plants but I’m not convinced this does anything. Most of the actual pots already have copper tape around them and that didn’t stop the slimy suckers. Slug Gone was praised on the Organic Garden Catalogue website when I bought it but it can’t be that good because they don’t sell it any more. I suppose it’s beneficial as a mulch anyway but now I’ve finished it I’ve bought what seems to be their latest favourite: Slug Snub. These are heavily re-caffeinated coffee grounds which is supposed to suppress snails’ appetites. The pellets must be useless because I never find any bodies. I have a trap filled with beer too. Hopefully one of these approaches will do some good!

Job Search Jottings: Not A Good Start

June 24, 2011 - 2 Responses

Feeling that at the age of 31 I really ought to be in a better position careerwise and moneywise than I am, I decided to focus and make a proactive plan rather than reacting to whatever chances come my way. To be fair on myself, I have been proactive at several stages in the past. Or else I suppose I wouldn’t have got the jobs/pieces of work that I did get. But at the same time it strikes me that I have had a lot of luck, and a lot of people who, for some reason, respected me and thought I was worth giving a chance. It dawns on me now that a 31-year-old blind somewhere-in-between-para-andquadra-plegic with a 10-year-old degree in Philosophy and History, a Masters in Computer Studies and a rather patchy mixed bag of employment history needs to do much more to get where I want to be. It does also strike me that luck and friends are running out, but I try not to think about that and the negative thoughts which go along with it (the interviews I’ve failed at, not capitalising on being a “young graduate” with a Masters while I was still young and it was still relevant, resigning from the most long term job I’ve ever had because my manager was essentially bullying me e.t.c.).

Where do I want to be careerwise anyway? I have never had any long term “career goals”. I have had things I think I’m good at and tried to get work involving them. My most long term job, with a Disabled People’s Organisation, seems looking back on it to have just come to me. That was fortunate for me, because I ended up being paid for something I thought was useful and seemed fairly good at. But things changed and, still struggling to come to terms with the fact that as a disabled person I can’t try and get *any* job in a factory, doing bar work etc, I need to decide on the sorts of jobs I’m looking for and get into a position where someone will give me one. It’s got to be a well managed project, not a wandering journey. Of course few people really want to work in bars or factories anyway, but I find it difficult not being able to seek such work as a means to an end. Still, I have decided on some goals and a plan to implement them.

This plan involves something I would have never considered until now: contacting the Disability Employment Adviser. Oh the the joys of the job centre: discussing your personal situation in front of everyone, being told you aren’t entitled to benefit, banging your feet while getting out of the ridiculously tiny lift, being turned away because they gave you the wrong appointment time. Still, I decided it’s just possible they can help me, and I ought to give it a try. So I banish my cynicism, swallow my pride and phone the job centre.

And the line went dead. They say they’ll put me through to my local Centre, but it just rang and rang before simply cutting me off. No answerphone, no “There’s no answer at the moment, would you like to call later?” from a helpful receptionist. Just cut off. Great.

I wasn’t surprised by this but still it’s pretty shoddy. I suppose I could have tried again but after psyching myself up once was enough. I will have to go in to the job centre and ask to make an appointment there. Not a good start.

Aren’t NI numbers supposed to be private?

May 22, 2011 - 2 Responses

What is it in these times when we are all supposed to be protecting our personal data and watching out for “identity theft” with more and more authority figures asking for said data?

When I recently filled in one of my housing association landlord’s zillions of forms I left the part asking for my National Insurance number blank. The other day I got a voicemail from them saying I hadn’t filled in the form properly and they “need” my National Insurance number.

Someone I know also was asked to give their NI number to a *potential* employer (Tesco) and could not proceed with the job application until they filled it in.

At my last care review I was asked for it by Social Services. On asking why they needed it they said “It’s nothing to do with benefits. We just use it as a reference number”. Ummmm…are you incapable of creating your own referencing system?

Call me old fashioned, but I thought NI numbers were personal information and only needed by, and therefore only to be disclosed to, people dealing with tax, national insurance or benefits. The information from the directgove website agrees me:

“It’s very important you keep your number safe and don’t give it to anyone who does not need it. This will help prevent identity fraud…”

And Social Services and landlords are not listed as people needing it. Nor is using it as a reference number listed as a reason to use it.

Hopefully I can refuse to give it to my landlord without causing problems for myself. I figure that with personal data, the fewer people/places that have it the less chance of it being misused.

Pick A Colour

May 3, 2010 - Leave a Response

Red for stop, green for go
Blue for rejected feet
Yellow for sunshine programmed to faide
A vote, a prayer, defeat