Tuesday, 30 August 2011

Open Thread - Scrimping for Victory

Those dinner parties of the noughties, where everyone talked about how much their house was worth are giving way to discussions about how much everything costs and how hard it is to make ends meet.

My well off friends, my middle class friends, my student friends and my pensioner friends are all looking for ways to trim their bills and on twitter last night, people were sharing their tips for getting by.

As I'm up to my neck in toddlers this week, I thought you all might like to share your tips and suggestions here in the comment thread. Got any brilliant ideas for cheap food? Tried any clever ways of cutting the bills? Know any really cheap holiday options? Anything goes, or if you just want to debate and share, please do. The comments are often the best thing about my blog.

I'll start with a tip or two :  Most supermarket's will give away their carvery ham bones when they're finished. They still have loads of meat on and make a lovely stock for minestrone or Italian soups. Try asking at the deli counter - nothing ventured!! (Morrison's are excellent for this kind of thing and give me breadcrumbs from the bakery if I ask too)

Chorizo : Look out for the knobbly end of chorizo, reduced or sitting there forlornly. Don't get it sliced, just add small amounts to pulses or tomato sauce or rice dishes. Incredibly tasty. (hat tip to @immigrant007 on twitter)

If you know anyone who works for EDF energy, they can get you 10% (or even 25%) off your mobile phone bill if you have a contract with Orange.

There. Your turn! I'd like to have regular open threads so if anyone wants to suggest other subjects, then please feel free.

Saturday, 27 August 2011

Quick but furious rant

Grant Shapps, the Housing (homelessness?) Minister has just mused that the unemployed may have to pay full council tax. I'm so jaded, I can't even be bothered to point out the utter donkey-breath-stupidity of this possibility, but a throwaway comment in the article made my fury levels boil over.

When asked how local authorities might save 10% of the council tax relief bill, he opined :

"they could take it from non-working people who don't have children or aren't disabled."

Oh, how reasonable! I've heard ministers use this "compassionate" and oh so reasonable qualification a few times recently. How nice that they wouldn't include disabled people in such a policy!! Of course they won't be evicting sick or disabled people, making them pay full council tax, taking away their benefits, cutting their care or taking away their means of transport!! Of course these tough-talking policies would never be aimed at the "most vulnerable". 

Nope, that's because they've made sure that no-one is disabled any more!! Genius! change all the descriptors, make it impossible to qualify, tell people that actually, their severe illnesses or disabilities no longer entitle them to state support - no longer even count as disabilities at all - throw millions of them off benefits then, when, in the end, only 6 people are officially classed as "disabled" offer them all the support and exemptions in the world!!

When they said they'd "protect the most vulnerable" they meant people scheduled to die before the end of next week. 

Excellent. That's OK then.  

It's all in Your Head (or the Biopsychosocial Model)

Age : 10 - 16

Various GPs :

"It's all in your head, you're "just" Depressed/Anorexic/Attention Seeking".

Oh. [long pause] Really? Only my tummy hurts and I keep being sick?

"Well, what's going on at Home/School/With Friends?"

Erm. Not much. [Not sure what the answer should be]

"Take paracetamol and suck on a mint."

Oh. [long pause] OK.


It turns out of course, that it wasn't all in my head. It was all in my genes and my blood and my immune system and my cells. When I was diagnosed in 1989, I'd had no investigations at all for 6 years. I looked skeletal, I'd spent 6 years calling out of hours doctors, writhing in pain, crumpling at school, vomiting at parties (without alcohol!!) and learning the very definition of boredom at A&E.

Age : 16 - 27

Reflexologist/Accupuncturist/Hypnotist/Counsellor/Faith Healer/Homeopath

"It's all in your head your chakras/energies/balance/thinking are wrong. Be calmer, be stronger, have more faith, let go of the past, you'll be fine."

Oh. [long pause] Really? Only my tummy hurts and I keep being sick?

"Well, what's going on at Home/Work/With Friends?"

Erm. Not much. [Not sure what the answer should be]

"Take emu oil and develop your aura."

Oh. [long pause] OK.


So I ignored the physical totally. I believed them all. I went to college against the advice of my teachers, I went to uni against the advice of my doctors, I applied for the Erasmus scheme and spent 3 months vomiting my way around Italy, I graduated, I fell in love, I travelled via the pharmacies of Europe, crossed America on the back of a motorbike, fertilising cacti with yet more "all in my head" vomit for over 3,500 miles.

I worked. High powered jobs, calm, laid back jobs, part-time jobs, late shifts, bar work, singing in clubs, teaching. Trouble is I obviously just didn't try hard enough. No matter how many times I told myself it was "all in my head" my bowels disagreed.

"No!" They griped back at me. "It's in here! Oooh-oooh! Look! Down here!"


Age : 27 - 38


"It's all in your head, you're "just" a victim, just not trying hard enough. A parasite, lazy, feckless, irresponsible."

Oh. [long pause] Really? Only my tummy hurts and I keep being sick?

"Well, what's going on at Home/With Friends?"

Erm. Not much. [Not sure what the answer should be]

"Get a job, you'll feel much better"

Oh. [Long Pause] No.

You see I've been there, done all that, tried everything I could think of, fought, scrapped, battled, stubbornly rejected the word "can't" adopted your "social-model" and found that it's an absolute heap of steaming manure.

It's not "all in our heads." Positive thinking and courage are certainly important, but if they could cure us all no-one would ever die would they?

Doing everything you can is responsible. Doing more than you should is stupid.

Trying your best is vital, every single day, but magic wands are not yet widely available.

Being calm and zen is desirable, but hard to maintain on an hourly basis in any life.

Living on vitamins, lipids and raw carrots is theoretically possible, but relatively pointless.

The "Disability Deniers" can ignore evidence if they wish, but do you think we might keep them away from the DWP? Only it's a bit like letting creationalists take charge of religious education. Or letting climate change deniers legislate on the environment. The put-your-fingers-in-your-ears-shouting-la-la-la method of governance is not usually known for it's satisfactory outcomes.

Friday, 26 August 2011

Human Rights? Not if you're Disabled.

For goodness sake make it stop!!!!

Some seriously scary articles have been popping up - should I say exploding like grenades? - all over my laptop lately. If what I write doesn't worry you, then these should surely cause concern?

Firstly http://www.edf-feph.org/Page_Generale.asp?DocID=13855&thebloc=27880 The largest disability groups in Europe unite to take a case against France - yes France - to the European Court of Human Rights over the forced sterilisation of 5 disabled women. A eugenics case going to court in a developed nation.

Here's a lawyer, blogging about his experience of representing a cancer patient who failed her Work Capability Assessment for Employment Support Allowance http://frontlinehackney.blogspot.com/2011/07/cancer-who-gives-atos.html

Anyone interested in any small way in free speech, might want to read the latest posts on the CarerWatch blog. A site that provides support for carers as well as sick and disabled people, who's private, members-only, forum was closed down last week without any warning or explanation. ATOS Heatlhcare, the private company who conduct work assessments for the government, asked the American hosting company to close down the forum, seemingly without directly contacting CarerWatch - a moderate, intelligent, campaign group. http://carerwatch.wordpress.com/ The matter is now under discussion.

This article suggests that the government's Work Programmes, charged with getting unemployed, sick and disabled people into work, are "facing collapse". http://indusdelta.co.uk/story/work_programme_risk_financial_collapse_says_social_market_foundation/7362
it seems that in a characteristic flash of smoke and mirrors, the DWP have set performance targets so unachievable that at least 90% of the organisations involved, risk having their contracts terminated.

Shall we end on farce? This article in the Guardian http://www.guardian.co.uk/uk/the-northerner/2011/aug/24/mobility-scooters-satellite-tracking-money-saving-measure?CMP=twt_gu reports on  plans from Manchester council to "track mobility scooters" and  - wait for it - send dementia patients text messages 4 times a day to remind them to take their medications rather than go to all the cost of pointless nurses!!

Bleep - Text - "Time 4 yr meds Mr Parker
Mr Parker - "Oh yes, meds. which meds?.... Potters off
Gets to kitchen. Makes a coffee.
Bleep. Text - 4mg Genericol
Mr Parker - Mmmm, nice coffee.......

Wednesday, 24 August 2011

We're all Cheats Now

I don't know if you saw this article yesterday, it was, after all in the Express, the Mail and the good old third wheel of benefit attackers, the BBC.

"25k "Disabled" cheat caught on water slide" is the title of the article, accompanied by a picture of pure joy as the woman whizzes down, caught on camera in what the article implies are her own holiday snaps.

Now, the woman pleaded guilty. She had claimed she was "too weak to walk any significant distance without crutches" and she was in receipt of both the higher rate care and higher rate mobility components of DLA. So that's that then, job done. Another evil scrounger banged to rights m'lud.

Except Houston, we have a vast problem!!!

Anyone with a fluctuating condition (and there are millions of us) faces an enormous quandary when filling in either DLA or ESA forms, but particularly DLA. You see, some days we might be quite well. Goodness, we might even (whisper it) be able to enjoy a water slide!!! We have to fill the forms in as though it is our worst day. Well, my worst day is an attractive montage of "nearly dead." I can't get out of bed, can't walk at all, can't eat, vomit every twenty minutes, shove needles in my buttocks to control pain and nausea every 2-4 hours and sometimes my poor little body shuts down altogether, threatening to put me out of my misery with some kind of dramatic stroke/seizure/heart weirdness.

So what to do? I still have a "disability" it just doesn't conform to their narrow little idea of someone who's legs don't work. I have been lobbying hard to make ministers see that there are other parts of the body, but as yet, we are still living in a leg-tatorship.

If the forms put me in a quandary, imagine how the assessors or decision makers at the DWP feel! DLA is meant to acknowledge the extra costs of being disabled. I have many extra costs to cover - £60 a pop for petrol to get to and from my hospital every month, around £100 more to enable me to buy the very expensive food supplements I need. Night time care (we won't go into details, but it isn't pretty)

I am told I ought to qualify for both higher rate mobility and higher rate care.

So what then? No "happily climbing cobbled hills and bounding down steep steps." for me or the millions like me? No swimming or having fun with the kids on good days? Even her red bikini was too cheerful, presumably only drab grey will do for parasites like me. 

I had countless messages yesterday from people in utter misery. The article states that "DLA is reserved for the most severely disabled members of society". Well, only lately. Now, when they say most severely disabled, they mean people who are totally incapable of any meaningful independent actions, but in fact that wasn't the point of DLA at all, it just got more and more draconian over the years.

In the last two years or so in our leg-tatorship, anyone who doesn't conform to this political definition of disability feels that they simply mustn't have any kind of life at all. I regularly get messages or comments from people who are too scared to leave their homes at all. I am constantly horrified by people who know that anything they try to do may be caught on camera and used against them. We live in a culture of fear that is just so sad. 

It didn't used to be like this. There was a respect, a sense that you deserved a little dignity. Now we all question everything we do every day. Far from enabling us, society is further disabling us - taking everything away in exchange for a few quid that keeps us living in poverty. I'm ashamed of many aspects of our current welfare provision, but this shames me more than anything else. 


A while ago, I wrote this post, and rather than write it all over again, I'll re-post it here. I hope it gives others a little strength and reminds people that just because we're sick or disabled, we're not criminals and no society that calls itself a democracy has the right to make us feel that way.  

"you can watch me if you like. Take your pictures, twitch the curtain, send me forms and summon me to assessments. Doubt me, judge me, even try to take away my dignity, but you will NEVER take away my shoes. 

If I have to use a wheelchair, then surely it's time for the 8 inch hooker heels? (Electric-blue satin with never ending chrome spike heels. If I can't walk anyway...) If I feel like wearing fake-fur and ripped leggings I will. I will wear red lipstick and paint my nails gold. If I want to go to dinner with friends and sip cocktails and nibble tapas and pretend, just for once, that I won't pay for it dearly later, then I will. I don't do hair shirts and self-denial.  

If I have a rare good day, amongst the searing pain and endless vomiting and I want to dance, then I will dance. Joyously, because I know that joy is fleeting. If it puts me on the floor, I will still dance, because I am free. You can't tell me never to dance. 

If you follow me walking my kids home from school one day you might see me chase them, giggling until we fall in the crunchy piles of autumn leaves. Will you see the wince I try to hide as we carry on home? Will you notice my six year old take my arm because he's already learnt what giggle-chases cost me? But I vow to chase my kids whenever it might not kill me.

If I see your hypocrisy clearly, I will write about it with scorching fire.  I will tweet from a hospital bed, with my drips and my bleeps and my needles and tubes. Read it if you like, you might learn something. Writing is all I have then - did it ever occur to you I can dictate? 

At weddings, I will wear a hat. An enormous, wide brimmed, floppy hat, with freesias stitched into the brim. I will hold my head high, push my shoulders back, paint on a dazzling smile and sip champagne. Life and soul for the hour or two life and soul is required. But will you see me when the mask slips? When my soul can’t cover for my life any longer?

I can transform, butterfly-like with expensive skincare and will-power. The grey, clammy, puffy little face you know will emerge, glowing and radiant, my eyes sparkling, my hair shiny. Like Cinderella, the sheen will fade by midnight, but you might not notice, busy as you are marvelling at “how well I look.”

One warm, summer afternoon, when the breeze feels like silk, I will take a motorbike ride with my husband, racing through hazel lined lanes across the rolling South Downs. I will gulp in pleasure and live a year in those few, adrenaline-fuelled hours. I will pull off my crash helmet, shaking my hair and laughing at life. I wonder if you'll remember how little my life normally gives me to laugh at?

So, whatever money, or security or comfort you try to take from me, all those other things are mine. Chronic illness takes away almost everything you ever took for granted - ambition, spontaneity, careless energy, dreams, independence - sometimes even love. When any of those things come fleetingly within my grasp, I will grab them. 

Wearing an Elvis-print mini-dress and pink polka-dot Jimmy Choos"

Monday, 22 August 2011

Blink & you'll miss it

I started back on the chemo-style shots a few weeks ago.

To give them their full title they are TNF-Alpha treatments and mine is adalimumab.

I took part in trials of the very first TNF-Alpha blockers that came to the UK (Infliximab) and I'll never forget the day, a few weeks into the trial, when I found myself standing in a Post Office queue realising I actually felt well.

It hit me like a wall. I felt OK. No pain? Check. No need to rush to the loo? Check. No nausea? Check. No crushing fatigue that makes standing in queues a Guantanamo-level torture? Check. After gingerly running through possible symptoms and finding none, I started looking around me at the others in the queue in some kind of trippy shock. I don't exaggerate. Looking back, I think I flirted with some kind of full on mental breakdown that day.

As the wonder subsided I started to feel angry. Furious in fact. Did "normal" people feel like this all the time? Really? I'd been ill since I was very young, so I knew no different, but all I could think of in that queue that day was what are you all doing with your lives?

If I had that kind of energy every day, that total freedom from thinking about pain and nausea and malnutrition I'd be climbing mountains or trekking through South America! I'd be dancing til 4am, whirling and twirling until the sweat made my make up run. I'd be Happy! Oh, surely, people who feel like this every day, people who are free are never unhappy! Why would they be? Why would the old lady behind me be moaning about the price of her gas bill and the man at the counter, why would he be so grumpy all the time? Why?

(**At this point I should point out that I live in Retirement-Central and clubbing was probably a little beyond most in the queue, but I don't claim I was feeling rational - far from it.)

In those few moments I realised just how precious life is. Every last second is a gift and if you're lucky enough to live it in good health, you are truly blessed.

Unfortunately, it's common to build up anti-bodies to TNF-Alpha treatments and born-under-a-lucky-star Suey has managed to do so each of the three times I've started on the treatments. But.....oh but, those few weeks where I feel just like everyone else. Where I can bake bread and tidy up and dance!! Where I can just be carefree! Not think about four hourly pain meds or weighing up chores against energy. Where I don't have to have a little internal cry every time my kids ask to go to the park!!

And you never know, this time it might last. This time it might give me just a few weeks longer. It might keep me feeling just like everyone else. But I can't imagine it any more. It's been too long and I've been let down too many times. If you see someone looking at you strangely in the supermarket queue, her eyes full of wonder, you'll know it was me.

Saturday, 20 August 2011

Fashion - Necrosis is the new Black

For those at the cutting edge of medical fashion, few trends could be more sharp than "Necrosis Black with Pustule Yellow." Picking up on the season's bold emphasis on clashing and contrasting colours combined with the bold bravery of welfare-austerity, rotting-pus is bang on trend.

Rags are good - an emphasis on "vintage" giving the lie to "We're all in it together." As Gucci and Burberry give way to Primark and Pound Shop, look for cheap fabrics, fraying seams and very poor cuts.

Those sporting "Path-Lab Red" brave enough to clash with "IV Purple Bruise" will ensure they stay one step ahead of meeker medical-fashionistas.

"Pallid" - always on trend amongst the "Beech Ward Brigade - has become the number one statement for Autumn/Winter. Joined by the legions of poor and hungry, and the millions unable to take advantage of a Costa-Del-Wealthy tan, months spent bedridden or housebound are really the only way to achieve the look successfully. (Though heroin and crack addicts of the traditional size-zero-community should manage to stay one step ahead of the crowd.)

Look out for Bile-Green splashed in Jackson-Pollock-style specks on oh-so-industrial bandage-grey on the catwalks of Paris and Milan for Spring.

Eyes, should be heavily underscored with black circles - the "welfare-terror" look is in vogue and should continue to be popular well into next Summer and beyond. The Insomnia collection is a good example of one to watch. Also "Fatigue" and "Bed-Hair".

New Spas, emulating NHS treatment weekends have sprung up around the country, with enemas, vascular access and free drugs amongst the options most fiercely sought. Waiting lists are growing by the day!!

To conclude, the Vom-Chic trend looks set to continue. Time to look out those surgical-stockings.

My look for 2011/12 is Skeletal-Steroidal - what's yours?

Thursday, 18 August 2011

The Remarkable Supermarket Boycott

Regular readers might remember this article  about cooking on a really low budget. What started as a gentle swipe at London journos astonished that anyone could feed a family of four for £50 a week, took on a life of it's own in the comments thread.

As you all shared your tips and hints, it became both heartbreaking and inspiring.

My dissatisfaction with the supermarkets rumbled on. Rice that went from 89p to £1.39 in a week. Chocolate cookie treats that the boys love suddenly sneering down at me for £1.79!! Tomatoes and courgettes stubbornly clinging to their eye-watering price tags despite a plentiful summer glut. It felt like a weekly mugging, I rarely came away satisfied with my purchases and found the acres of shelves stretching as far as the eye could see beyond my spoonie limitations more often than not.

Why? Tell me someone, why do I need 7 types of tinned tomatoes to choose from? 28 brands of sausages? Yoghurts have now clearly mutated beyond manageable levels to reach an out of control epidemic of soured milk products. How can there be a cheese aisle? A good deli would manage with a small counter and somehow offer me much, much more choice? Flummoxing is what it all is.

Well, a few weeks ago, I thought I'd try a experiment. I took down all the prices of fruit and veg at the local supermarket, then toddled off to a farm shop with the boys, clutching my comparison chart like some kind of weirdly obsessive mystery shopper. I live in Sussex remember, but I thought if the prices weren't too much more, perhaps I could stretch things enough for it not to matter.

The farm shop sits at the corner of our local Pick Your Own farm and the boys and I love nothing more than scrumping pro-dooce when Mummy has the spoons. They run a tractor all day, trundling from field to field stopping to pick us up on a trailer, so actually, it can be quite a good spoonie day out. Every time it all gets too much, we just hop on the tractor until I recover, the boys unaware that anything's even wrong. I can't get stranded in the top field or stuck in the strawberry patch.

Anyway, the point is, the farm shop is crammed with scrumminess, all covered in mud that has been plucked from the earth just a few 100 yards away. And guess what?? It was cheaper than the supermarket on every single item!! I was beyond surprised! I know it should have been cheaper with fewer overheads and no middle man, but this is Sussex! We pay a Hessian tax and a lentil tax for anything even vaguely natural. Enormously pleased with myself I stocked up for the week and felt like, somehow, I'd done a good thing.

Encouraged, I decided to do the same with meat. My parents have lived close to a very good farm-butcher all of my life and over the last decade they've expanded their stock to cover almost everything you can think of. Dried goods that you can buy like pick 'n' mix, frozen fruit for pies and smoothies, a very good frozen fish section, a deli with home cooked hams and yummy cheeses and fresh baked bread.

I was utterly astonished to find that the meat too was either cheaper than the supermarkets or just a few pence more per kilo! Seriously, I didn't stop telling people about it all week! Lamb chops in the supermarket = £16 per kilo, Lamb chops in farm shop £9 per kilo!! The nice butcher even said he would keep me a breast of lamb every fortnight and not charge me Fearnley-Whittingstall type prices!

Now, I know this wouldn't suit everyone and most spoonies would not be able to go to two separate farm shops every week, but if it's viable, I urge you all to check it out! Less packaging, far fewer chemicals, local food, yummy flavours (quite different in almost every respect to anything I could buy at a supermarket) AND not the preserve of the more affluent it seems!

I'll let you know how it's going in a few weeks - my cunning plans often come to nothing for some obscure reason I've failed to consider, but all being well, I can start to poke my tongue out at supermarkets whenever I pass their hulking cathedrals of neon and plastic.

Tuesday, 16 August 2011

Update - A Genuine Success!

Regular readers might remember this post some time ago about the disappearance of a vital Bowel Disease helpline at Addenbrookes Hospital.

I explained how just two specialist nurses had made the difference to thousands of IBD patients, saving the NHS millions in the process. The helpline had had to close due to lack of funding and increased demand.

Having sent my article to the CEO, Gareth Goodier, the PCT and the hospital trust, I urged you to do the same. Mr Goodier replied kindly, acknowledging how important the service was and many of you contacted me to say you'd written in too, also receiving encouraging replies.

Well, the excellent news is that the bowel nurses assure me a trial of the service will recommence in September with a view to reviewing funding from the PCT. All being well, the helpline will be officially back up and running in November!!

This is truly wonderful news and will be a great comfort to the thousands of patients who rely on this lifeline. At the same time, I'm sure it will continue to provide outstanding value for money, relieving pressure on other departments and consultants.

Total Politics 2011 Blog Vote


It seems I may have already had one or two votes for the Total Politics Favourite Blog of 2011 award.

It also seems that others are shamelessly pimping themselves out for votes, so I too will bashfully clasp my hands behind my back, kick one foot about whilst looking down at the ground and ask quietly that if you've liked my blog, you might spend the 10 minutes or so filling out the (pesky) form here :


The closing date for votes is, I believe, this Friday, 19th August

*sidles off*

Monday, 15 August 2011

Alternative Reality

Good morning world! I'm back from my "holiday".

The next time I suggest it might be a good idea to go camping with two small boys, bowel disease and osteoporosis, could some kind benefactor please send me to the Caribbean instead? First class? With porters? I was so exhausted by the time we went to stay with our friends at the weekend, that I could barely get out of bed.

I valiantly smiled and joked through long days out at Longleat, cold, damp, evenings around the campfire and endless meals I really shouldn't have been eating, but truthfully, I'll need a fortnight to recover.

The only real mishap came after we'd driven through the wonderful safari. After lunch (plastic hotdog with chemical mustard) I just hit the "spoonie wall". I couldn't walk another step and simply had to lie down. Easier said than done in the middle of a several hundred acre estate where, sadly, Lord Bath was not available to offer me a bed for an hour or two. (Though I believe his track record may have made that a rather dangerous proposition in itself.)

We decided that I would get a cup of reviving tea in the beautiful orangery cafe, then find a quiet corner of the "secret garden" for a nap. Dave would take the boys to see the birds of prey. A little embarrassing certainly, but far better than fainting in the middle of the maze. The queue for tea was mighty and I looked at the counter in defeated-dismay. In the end I just collapsed at a cafe table in the beautiful rose garden and fell asleep on my arms, drugged by the roses warming the air with heady scent. After a while a kind waitress walked past and I swallowed my pride to ask if she could get me a drink. I'm disabled, I explained and just couldn't manage the queue.

With my tan and lack of any visible aids, I don't look at all disabled, but I guess falling asleep at the table gave her a clue.

After I'd had a drink, I shuffled painfully towards the beautiful walled gardens and curled up in a corner, the latest display for tourists to gawk and giggle at. I waited for Dave to come back with the boys. And waited. And waited. They just didn't show up! What could I do? I couldn't possibly walk anywhere to go and find them. I wondered if Longleat had a mobility centre? Could I get a wheelchair for the rest of the day? My phone was with Dave, so I couldn't call him, I just had to wait and hope they found me in the end.

It's a scary prospect. Being too "vulnerable" to help myself, suddenly removed from the safety of Dave to help me through, unsure what I'd do or how on earth I would alert anyone to my distress. I went over the options in my mind, frantically trying to form a plan. By this stage, Dave and the boys had been gone for over two hours. The sun was burning me, I was getting weaker. (I may have been cursing myself a little too, for being too proud to even carry a backup folding walking stick...)

I decided there was nothing for it but to throw myself on the mercy of a passing tourist, ask them to get a member of staff and try to arrange some kind of wheelchair (and someone to push it!) until we found my family. Just as I was plucking up my courage to call across the lawns to some random stranger, Dave appeared around the corner with two exhausted little boys. We're still not quite sure how we managed to miss each other - they'd been looking for me for over an hour, but I can't tell you how relieved I was to see them.

This is not the first time I've been stranded in the middle of a theme-park/zoo/play centre wondering why on earth I think I can do these things. Invariably, Dave ends up carrying me back to the car (we pretend it's a game for the kids) or I'm on my own with the boys and feel that same sense of panic - it's terrifying. "There's no such word as can't" is becoming patently less true as the years go by, but I'm too stubborn to admit it.

I cringe when I hear Dave tell the boys "Mummy just needs a little rest" or "Mummy's going to have a quiet day today" as he persuades them boys need boy-time and really, it's nothing to do with Mummy's "poorly" at all.

Still, despite my rather gloomy account, I made it, we had fun when we could, and I'm back in one piece.

I got home to my DLA decision. I'd sent my application off a month or two ago and knew the letter would probably be waiting for me when I got back. Sure enough, there was a brown envelope lurking amongst the flyers from Virgin media and the take-away menus. The brown envelope. Those few square inches of terror that makes any disabled person quake now.

Guess what? I'm fine!! Don't need any help at all, apparently. No help with Longleat-mobility at all. No help with care, nothing. The "reasons" quoted in the rejection letter were exactly the kind of kafka-esque nonsense we have come to expect from the DWP. They bore no relation whatsoever to the answers I'd given on my form - so much so that you'd laugh if it wasn't so depressing.

I have a month to appeal, they say. Great. Yet another hoop to jump through, more forms to fill in, more letters to write. Anyone who's not quite sure why I might need DLA can read my profile on the right hand side of this blog. Yet I don't qualify according to the "decision maker" It makes you wonder who does doesn't it?

We are not too despondent. It's incredibly common for people with long term variable conditions to be excluded from the welfare system. But I do feel a little grubby.

Somehow, being turned down initially makes me feel like a fraud for appealing. It's exactly how those in charge of the process hope I will feel. They know many won't bother. If I could possibly survive any more without acknowledging that my disability is becoming more intrusive, I wouldn't bother either. If I was wealthy, I certainly wouldn't bother to demean myself and my pride, begging for a paltry few quid a month.

But I'm not. And I need a little more help than I used to. It shouldn't really be a big deal should it? I have a severe form of a diagnosed long term condition with a clear, degenerative pathology. People like me are clearly going to need a little help if we're lucky enough to dodge death as adroitly as I have.

Still, I'm not wealthy, and I'm not as able as I used to be and Dave is caring for me more and more, so I shall just have to swallow that huge ball of pride and hold out my begging bowl. I suppose the only silver lining is that the system is now working exactly as those who designed it hoped it would.

Friday, 5 August 2011

More Potter Magic!

I really am going on holiday, honest, but I couldn't go without sharing the latest exploits of George Potter, the Lib Dem who has tabled the motion at conference to oppose both the assessments and time limiting of ESA. http://diaryofabenefitscrounger.blogspot.com/2011/07/magic-mr-potter.html

This article http://www.guardian.co.uk/society/2011/aug/05/liberal-democrats-employment-support-allowance is causing quite a stir online and having spoken to George quite a lot lately, I get more impressed by the day! He wondered if any of you could share a short paragraph of your own experiences of ESA assessments or how the time limit will affect you? It would help to add the "personal story" to the debate of the motion. 

If so, please either leave your comment below or email me at suey2yblog@hotmail.co.uk.

Let's hope no-one can break Mr Potter's spell :*

A Song for Danny Alexander

Did you ever see Danny Alexander defending the sick and disabled against ESA? Did you see how he knew the details, was aware how many decisions were incorrect? He's never mentioned it again since he became a minister. The link to him opposing ESA is here (just the first minute).

When you've seen it, perhaps you'd like to click on the next link and read the lyrics below it at the same time? My Ode to Danny, "Oh Danny boy, the jags, the jags are calling....."

Oh Danny Boy!
The jags and jags are calling.
From No.10 and from the Treasury.
The passion’s gone and ESA forgotten.
T’was you t'was you, but now you’ve turned away.
So come ye back! Remember how we need you
Disabled, sick and vulnerable in need.
We’re all still here, forgotten in the shadows.
Oh Danny Boy! Oh Danny Boy, we need you so.

And if one day, you think again of ESA
And I am dead, as dead I may well be
Will you recall, the times you said you’d help us?
Or hide away? Pretend you cannot see?

We have no friends, no politicians caring
No-one to save our fragile dignity.
Will you come back and fight for what your heart knows?
Your time has come to be the man you ought to be. 

Thursday, 4 August 2011


Today, I will mostly be washing odd socks, frantically searching for swimming trunks and last year's buckets and spades and making sure my meds are all up to date and in plentiful supply.

We're going on holiday with the kids, largely thanks to the goodwill of dear friends and family.

We have no money, but friends have lent us their canal boat for a day or two, arranged a cottage for a few more days and lent us a tent to cover the rest of the week. We have a pass for Longleat that still has lots to do on it from last year, and I will be attempting to cook for four on a two burner gas stove without burning down half of Somerset.

I won't take my laptop or iphone and I intend to steer clear of the news at all costs.

I can't pretend I'm not concerned. Camping and bowel disease are not easy bedfellows, but more than that, I worry about taking a whole week away from emails and journalists and politics at a time when every day counts in the race to stop the welfare reform bill. I have articles cueing up to be written, documentaries to finalise and reports to read.

I also have two adorable little boys who can't wait to build sandcastles and climb trees and remember what Mummy's face looks like without a computer screen in front of it.

David Cameron meanwhile is in Tuscany. For two weeks. Apparently the villa costs £9,700 a week. The telegraph reports that he will have another holiday before the end of summer recess, taking his holiday tally to  four in just under 5 months. That's Tuscany, Ibiza, Spain and Yet to be Confirmed. In 5 months.

George Osborne is in LA, staying in a pricey hotel and taking his kids to Disneyland. He went skiing in Klosters at Christmas, on of the most expensive ski resorts available.

Now, don't get me wrong, I couldn't care less where wealthy people go for their holidays or how often they take them. I do worry however, that our country is in pretty dire shape and both our PM and chancellor seem less concerned with sorting it out than I am.

I also wonder exactly what families like mine, up and down the country make of our "All in This Together" austerity-freak politicians. As we empty pound jars to boost the ice cream funds and put off fixing the gutters to fund a few days out, we wonder if we'll still have a job to come home to.

Oh well, for 9 glorious days, I refuse to make it my problem!! Think of me if it rains and whatever your own plans, I hope they're joyful and relaxing. Take a break, read a book or two, and I'll see you all back here soon, refreshed, energised and ready to let battle recommence.

Happy holidays!

Monday, 1 August 2011

Survey on DLA - Papworth Trust

The Papworth Trust are running a survey on DLA - how you feel about the proposals to replace it with Personal Independence Payments, what it would mean to your life if you no longer qualify under the new rules, etc.

If you'd like to help, it's anonymous unless you want to leave details at the end and every view counts!!


What have we Achieved?

Regular readers of my blog will be familiar with both the sense of crushing defeat and delighted success we regularly share.

We have one of the hardest battles of any group. We have no unqualified political support, we have to battle a hostile media, we have less physical ability to make our protest and we are dealing with Welfare. The most right-wing, hard-line department in politics - whoever is in power.

Perhaps most dauntingly of all we must try to counteract and disprove a set of perceived wisdoms in society treated as "fact" by most. We are "scroungers" "irresponsible" "invalid". They think sick and disabled people don't work - 60% of us do. They think we live a life of ease at taxpayers expense - we are in fact more likely to live in poverty than any other group.

Given all these disadvantages and barriers, it would seem likely that we would give up. It would seem fair to assume that we would not find a voice, that we could never make ourselves "visible". Politicians might assume we would achieve no sway over political outcomes or gain much traction with a sceptical public.

Today, 250,000 articles will have been read on this blog. A quarter of a million opportunities to make our case. Since last October, tens of thousands of people have shared it with their friends, sent it to their MPs and linked it to their social networking pages. I have found myself speaking to welfare ministers and journalists, radio shows and conferences.

Thanks to all of you, my blog went into the the top 50 political blogs within 4 months (Wikio) and has stayed there ever since, climbing to No. 31 today.

You support me daily both in small ways and by taking enormous personal risk. Together we've found a voice and it has gained power and strength. We've come together to fight and as we celebrate such a significant milestone I wanted to take a look at how far we've come as a movement in just a few short months.

I think the most significant achievement is the solidarity and commitment of all those involved. Charities have come together as never before, campaign groups and unions are united on the issues that matter the most. We have managed to distil our arguments down into a few vital points and from Scope to The Broken of Britain, from The Disability Alliance (an umbrella group of over 270 charities) to DPAC, from Carer Watch to MIND we respond to challenges with a dazzling array of different voices, but they all carry the same message.

May saw the biggest protest of sick and disabled people in UK history. Over 8,000 people turned up to the Hardest Hit march, with hundreds staying to lobby their MPs in Westminster. The support of both traditional charities and social media gave the event a profile it probably wouldn't have had just a few months ago.

Other wonderful blogs achieve huge impact too - Benefit Scrounging Scum, The Tentacles of Doom, Dawn Willis, Where's the Benefit False Economy, FactCheck and many many more work despite great personal cost to reveal the mistruths and dangers of welfare reform.

Social Media is really where I feel we can be proudest. The speed and accessibility of social media has revolutionised the way sick and disabled people can engage with their own voices. This is vitally important. Unless we can speak for ourselves, we will never be able to explain how we are affected by random government policies. Never before have we been able to respond to a misleading newspaper story or government press release. Our articles are the most read and commented on and shared - not just in politics but often in the entire UK across any media. The internet has become one big forum accessible to sick and disabled people and we make the most of it every day.

Groups such as "The Armchair Army" have been set up specifically to support those who are a little more able physically to attend protests by arranging mass email events. These enable the less able to be heard and support the wider protest by raising awareness of our issues in the media. Quite apart from anything else, it's empowering. People who thought they were powerless can now make a real difference, every day.

The left wing bloggers could not have been more supportive or generous. They promoted my blog from day one and have always given me the space and encouragement to explain our cause - even when Labour came out of it like a stinky-pig. Left Foot Forward, Labour List and Liberal Conspiracy took up the call to stand "shoulder to wheel" with us and it has made a big difference.

The media have started to listen. Oh so slowly, and sometimes with frustrating inaccuracy, but that's simply because we all know the issues so well ourselves. Forget the Mail and Express - we have the Guardian who couldn't be more supportive, but lately, there have been stories on the BBC, Channel 4 News, The Mirror LBC, Dale & Co, Radio 5 live and many more. It is inevitable that such a "pressure-cooker" issue on-line will eventually spill over into the mainstream and when it does, we'll be ready. I've been working on contacts in the right wing press with considerable success, I hope you'll start to see the fruits of that very soon.

And politicians. When George Osborne announced the CSR we had no-one. No-one at all. Labour had largely got us into this mess and the Tories were happy to hoover us up and throw us out with the deficit. Prominent Lib Dems who had opposed ESA before the coalition such as Danny Alexander suddenly went silent when we needed them most.

But politically, we've come the furthest of all. The brilliant Rhydian Fon-James from Broken of Britain achieved success close to alchemy with Plaid and the Welsh parliament, resulting in Early Day motions backed by Hywel Williams. He deconstructed DLA/PiP proposals forensically, I worked on every line of the Welfare Reform Bill relating to ESA until my head hurt. Within days of knowing exactly what we were up against, we were able to start publicising and opposing the elements of the WRB that we felt were most dangerous to our supporters.

The stunningly successful Broken of Britain campaigns to raise awareness of DLA and what it's for went viral, supported by thousands online. It led to over 5,000 submissions to the DLA consultation - thousands more than they usually receive. I ran an "ESA week" a little later that brought issues such as Time Limiting ESA to just one year to the forefront.

Today, we can be proud. Labour took on almost all of the issues we're fighting and tabled them as amendments to the bill. In some cases they argued for much less than we need, but it gave us a chance to be heard in parliament and oh my goodness how we are heard!! We have been directly quoted in the committees, our speeches have been read out in the House of Commons, and the pinnacle for me was the day Ed Miliband stood up in PMQs and devoted all 6 questions to my issue. Time Limiting ESA was suddenly the most important issue of the day and I practically exploded all over the telly!!

While I'm talking about PMQs, this is where every single one of you takes a bow. Most of my campaigning and that of Broken of Britain has focused on getting you all involved actively. You have responded with dazzlingly effective enthusiasm!! MPs mailbags are groaning under the weight of our letters - WCAs, ESA and the abolishing of DLA are absolutely at the forefront of issues raised around the country and there cannot be an MP who is not aware of the things that concern us about the WRB. You only have to keep a tally of the questions they raise at PMQs - on all sides of the house - to see the impact we've had. There are regularly 3 or 4 questions to the Prime Minister expressing concern.

But where has all of this got us? I read comments every day from supporters despairing at the slow progress of our politics and asking whether anyone is actually listening at all?

Well, in just the last few months, I believe things have changed and that we now have a real chance of making significant changes to the bill.

The coalition have made such little progress themselves in finalising the details of the bill that it had to be delayed by two months when it arrived in the Lords. There is real concern in the Lords over some of the issues and much more cross party support.

The Disability Alliance have mounted an unprecedented legal challenge supported by over 270 charities and we must do everything that we can to support them. Government will ensure that they are opposed every step of the way and we must keep reminding our own charities that we need them to do this. Whilst they must work with government, they must also speak for us, the people they represent and they are doing a fine job of doing so.

We are working on several documentaries for the BBC and other TV stations that should air in the Autumn, widening out the debate still further as the bill is debated in the Lords.

Finally, and perhaps most crucially, we are now able to work with the grassroots of the LibDems who have seen the inequalities we are facing and have tabled a motion for their Autumn Conference opposing ESA assessments and the time limit. We finally have a chance to undermine the parliamentary majority that would ensure the WRB is pushed through despite enormous democratic opposition.

It's been a surreal year. Almost daily I have to pinch myself. But today, we can be enormously proud of what we've achieved, proud of our calm, evidence based responses to what are often vicious attacks. Proud of our strength and resilience, proud of our self confidence and intelligence.

If nothing else, we've proven beyond doubt that we do not in any way fit the insidious stereotypes designed to undermine us. We've found our voice and it can only grow in strength and dedication as we go on to achieve countless further successes.


What makes our campaigns work is you. Please keep doing what you do - tweet, link, email, send to  your MPs and don't let up on the pressure for a single day.