Friday, March 25, 2011

Baked Beans, Boobs, Bovril & Benefit Fraud

I'm smack in the middle of the few good days each month my hormones are at that mysteriously perfect balance to make me less bendy and floppy than usual. Such good days that I've been to see a friend for a cuppa in the evening, managed to stay out until nearly 10pm and still function enough the next day to go for tea with another friend, deathwalk without being rescued and dip my boob into cheesy baked beans. Ok, so that last one was a bit of an unintentional fail, but still, good days, hurrah! Unfortunately the downside to all this hormonal happiness is that unless the bendy body gods smile down upon me (maybe because they were amused by the cheesy bean boob incident) I'll be crashing back into full on floppyness just in time for my Big Society sponsored trip to London. But that's not til next week, so I'll worry about that on Sunday. For now, it's time to celebrate Spring and marginally less springy joints than usual. 

Yesterday a friend came to visit, and as tends to happen in my flat we found ourselves sitting outside the back door with a cuppa and a smoke. Small towns are universally special so when a lady in one of the houses backing on to mine started a conversation with us by hanging out of the window we didn't bat an eyelid. Not even when her elderly mother insisted on climbing two flights of stairs so she could see us and join in the fun. It's like being a celebrity without the celebrity bit. Fortunately these women didn't appear to have linked my face with the page 3 spread the local paper ran about my arse, unlike the staff in Sainsbury's, several of whom asked for my autograph. As my writing hand wrist is still fubard I'm planning an ink imprint of my arse to hand out to such interested parties.* So, we chatted away to the not at all eccentric mother and daughter, who was apparently pulling a 'sickie' from work. 

Fortunately for these neighbours they don't seem to be able to see as far into my flat through the skylights as I'd thought, so I was surprised when they asked why I wasn't at work. Not wanting to explain my medical history by shouting up to the third floor ladies I simply mumbled something about working at home and off they went. 

All this good day cure business makes me a bit paranoid about being reported to the DWP for benefit fraud, as many people with invisible illnesses or disabilities are by neighbours who can't see anything so assume it must not be there. At 3am this morning I was sleepless and the 50 trillionth dvd replay of Harry Potter wasn't doing it's usual trick of sending me to the land of nod so I grudgingly acknowledged the need for additional pain relief and stumbled through to the kitchen. BendyCat remained in bed as she still fears the nighttime loving slugs will break out of our old flat and find her here, so it was just me to enjoy the peaceful, starlit night and the sound of seabirds cawing. As I stood unaided on the doorstep, inhaling illegal pain relief to be followed up with an oramorph chaser I decided I was clearly so cured it was time to report myself to the DWP for being 'fit for work'. Y'know, cos everyone who's not ill or disabled feels the need to neck morphine in the garden at 3am whilst observing the long term results of the outdoor vomit experiment**

But, I don't look sick. Not most of the time. So on good days even I try to fool myself that I'm not. 

*No, not really. Although I may change my mind in a year once benefits cuts take effect ;) 
** Bovril washes away quickest. Tea with milk stains the paving and for some unknown reason apple adheres itself more stubbornly than dried out weetabix to pavement and establishes squatters rights.

Wednesday, March 23, 2011

The Guardian And Other News From The Broken Of Britain

First of all, sincere apologies for the radio silence from The Broken of Britain. Everybody's been busy dealing with the aftermath of Left Out In The Cold, and the progress of the Welfare Reform Bill.

The big news is the feature in The Guardian which focuses on The Broken of Britain. Kaliya has also had a Joe Public blog about the way the welfare reform fail to understand disability. There are also some other pieces lined up for publication elsewhere in the near future.

Away from the media, the Welfare Reform Bill has been plodding through Committee stage with its first sitting yesterday. The Broken of Britain has been lobbying Committee members, preparing evidence and staying on top of things.

Monday, March 21, 2011

Welfare Bill Ignores Reality Of Disability

Thanks to Society Guardian who've published my 'ability to mobilise' blog on their Joe Public site, here 

Please do share this link anywhere you can - explaining the kind of obstacles and barriers we have to overcome is a vital part of explaining to politicians and the public why benefits such as DLA should not be cut, and the consequences of doing so.

Friday, March 18, 2011

Ability To 'Mobilise'

One of the justifications for the proposed personal independence payment is that there is less of an need to supply a disabled people with cash for mobility costs now that we have the disability discrimination act to ensure laws governing access and the NHS to provide wheelchairs. So, instead of someone’s ability to walk, their ability to ‘mobilise’ will be considered. 

Today I am trying to book a train ticket to London for the 28th of March.  I wish to attend a meeting about potential amendments to the welfare reform bill in the House of Commons.  Fortunately the timing of the meeting means that even from Liverpool I can travel back and forth in one day if I take the train.  You might expect those laws against discrimination and ensuring access to mean that booking a trip to London travelling by train would be easy.  So far today I’ve spent over 2 hours trying to organise this trip to London and have yet to book a ticket.

It all seemed so simple: My plan was to drive to Liverpool with my mobility scooter which my Motability car is equipped to carry, park and use the scooter to travel by train to London with and drive home late evening. Use a ticket booking website and make a phone call to check about access and assistance. Except when it comes to disability access it’s never straightforward.  I spent some time selecting which train times would work, looking at prices, working out where to leave my car then decided which trains to catch, and found the phone number for the operator, Virgin trains to check the access requirements.

That was when it became really complicated, trains are accessible to wheelchairs including power wheelchairs, however mobility scooters are only allowed on some trains.  Virgin trains* only allow the three wheel type scooter as they do not have room for four wheeled scooters to turn.  They also do not have storage room so that a scooter can be stowed away from the seating area which would enable many mobility scooter users to travel independently by train as they tend to have some, limited mobility.  Despite checking and rechecking the various different regulations it seems that mobility scooters are quite commonly prohibited on trains.

So what’s the problem?  After all I do have a wheelchair.  Unfortunately I only have an attendant wheelchair as I am unable to self propel the traditional Manual wheelchair, which means that to use my wheelchair I have to have someone with me to push me.  I’m not entitled to a care package from my local authority, despite being disabled enough to receive high rates of DLA for care and mobility, so any support must be paid for from my disability living allowance care component which already pays to fund a private carer twice a week, specialist physio not available on the NHS, and myriad other additional disability costs.  Paying for a PA for the day plus an extra ticket on the train is prohibitively expensive.  Finding a friend to act as a PA may be possible but the meeting is held on Monday and most of my friends are in fulltime employment. Despite being Big Society fans the realities of mortgages, bills and life means however much they’d love to spend a day taking me to London their own employers just don’t feel the same. Funny that.

I am currently on a waiting list for an NHS Power wheelchair, I was referred before Christmas 2010 and I am still waiting to hear when my assessment at home will be.  Although I can’t self propel a traditional Manual wheelchair, I don’t technically meet the rules of eligibility for NHS Power wheelchairs.  In most areas an NHS Power wheelchair will only be supplied to people who are unable to walk or self propel a Manual wheelchair around their own homes.  If that’s the case, once the individual reaches the top of the waiting list they will be supplied with an indoor powerchair only for an initial period of six months before being considered for a powerchair that is capable of going outdoors as well as indoors.  The reason I don’t technically meet the requirements is because although my joints are too weak to self propel a Manual wheelchair I do have some, albeit limited mobility, particularly in my own home and wish to preserve its for as long as possible.

Instead of a wheelchair like many people in my position I use a powered mobility scooter.  They tend to cost less money, are available more readily second hand and require less specialist assessment to ensure they are appropriate to individual needs.  They tend to be used outdoors only preserving the ability to mobilize within the person’s own home and limiting the amount of work that needs to be done to make a home accessible.  I could use my DLA mobility component to fund a power wheelchair but it’s already committed to funding  a vehicle with a hoist so that I can use my mobility scooter independently, and if I ever become entitled to a powerchair would also be able to carry that.  

So I’m left facing the following options;

Find a friend who is free to take me to London and act as my PA. Fund their ticket and day. 

Find someone in London (who I won’t know) who is willing to volunteer their time to act as my PA for the day and travel with my attendant wheelchair

Share a friend’s PA, although we are travelling on separate trains and said PA would then need to assist 2 wheelchair users, pushing one of us to get back across rush hour London for a train. 
Hire a powerwheelchair locally and use that to travel independently. 

Option 4 is the most practical, I’m a member of Shopmobility in Liverpool and can hire a powerchair for a week for £40, plus a refundable £50 deposit. Unfortunately, despite my car having an electric hoist to lift my mobility scooter, a hired wheelchair won’t have the fixings needed by the hoist so that makes travelling to and from Liverpool complicated. I will have to find someone to drive me to Liverpool (about 25 minutes, including tunnel tolls each way) so that I can be dropped off at shopmobility, collect the powerchair and use the local trains to travel home, probably needing to book assistance in advance. I’d then be able to use the local train to travel to Liverpool, then London in the powerchair independently but I would have to fund an accessible taxi for the return journey home as it will be late at night. Hiring and returning the powerchair on the same day is not a practical option unfortunately. Then, finally I will have to travel back to Liverpool using the local train service, return the powerchair and find someone who’s willing to collect and drive me home – again likely meaning two sets of tunnel tolls. 

The initial cost of travelling to London as an able bodied person would have been approximately £61 plus whatever travel cards cost. Instead, as a disabled person it will cost me;

£40 wheelchair hire
£50 deposit (refundable but must be provided upfront)
£15 (approx.) Local train journeys to bring hired wheelchair back & forth
£6 tunnel tolls
£35-40 Accessible taxi
£? Taxi’s in London
£65 (approx.) Train fare

Meaning that although I will get the £50 deposit back I’ll have to find approximately £250 in advance to fund a day trip to London for a meeting. One week’s care component of high rate DLA is £70 (approx.) The total amount of time I've spent trying to sort this out is approaching 5 hours and I still haven't managed to secure my plans enough to be able to book a train ticket. 

So much for ‘mobilising’ Perhaps Ms Miller will do her Big Society duty and volunteer to drive me to London herself?

*Please Note: This is a problem common to all train companies and not specific to Virgin trains.

Wednesday, March 16, 2011

Burnt Out Sickies - By Sue Marsh

ESA week will face a short intermission.

We have all worked ourselves into the ground. Broken of Britain are temporarily, erm, broken, and I can barely lift a finger to type.

I was just going to post "Bastards" and be done with it.

Instead, I'll post this comment from someone who actually works in the Job Centre and knows from first hand experience that everything us campaingers have been saying is true. The sickness and disability benefit system is failing like a very. very slow car crash.

If you read my blog and think what I do is important, please take over today. Tweet links, write your own blogs, find a juicy bit of research but get the message out. I'm going to bed.

" I'm a DWP worker sticking his head above the parapet and hoping not to get shot... I work in a busy Jobcentre and my customers are those 25+ who've been out of work for 13 weeks or longer. Probably 60-70% of the one hundred or more people I see every week are evidently not fit for work and yet, in theory, it's my job to whip them through the same hoops as everybody else, persecute them, attempt to stop their benefits and generally shame them into applying for all manner of wholly unsuitable jobs that they're never going to be able to do. In reality, what I do is tell them the system sucks and advise them of ways they can stay beneath the radar, or suggest they sign off JSA and move onto ESA and do whatever I can to make the transition as trouble free as possible. On the other side of the office to me are the Pathways team, who deal with customers on ESA. We all know that over the coming months most of them will be forced to migrate over to the JSA bods like myself and we won't be able to cope with either the numbers or the particular problems that this customer group represents. The point of all this waffle is that the policy makers have embarked upon their catastrophic journey without consulting the frontline workers who, without exception in my experience, KNOW that the planned changes CANNOT work. I would advise people worried about a forced transition from ESA to JSA to be brave and try not to lose too much sleep about's just not do-able in the real world, there'll be a horrible mess and people's lives will face some awful but shortlived disruption and then it'll be business as usual. Also, for those who face the indignity of having to venture into a jobcentre from time to time, please be assured - the majority of those who work in them are actually on your side, and have probably less faith in our political masters than you do, and just as much awareness as yourselves that all their vitriolic guff about benefit scroungers and feckless layabouts is simply empty, venomous scapegoating..."

Originally posted here 

Tuesday, March 15, 2011

ESA Quiz - Guest Post by Sue Marsh

I know it's easy to just become noise. "In the third quarter of the blah ESA was tripled by the WCA DLA blah until 2002 when the IB, CA blah......."

You've all been very patient, but it's a bit like trying to learn Russian at night school. At some point you wonder exactly when you stopped having fun. 

So, today, I bring you, the great ESA quiz. ESA is Employment Support Allowance. It used to be Incapacity benefit and before that it was "on the sick".

Yep, we're the "scroungers". The one's that became too ill or disabled to work. The one's that pretend to limp before setting off for a nice game of golf. We all know one don't we? May be two or three. Lazy feckers who don't want to work so invent imaginary bad backs and find it incredibly hard to breath when a DWP agent walks into the room.  We've seen them on Saints and Sinners, we've read about them in the Daily Mail. Our brother's girlfriend's boss always lives next door to one..... Don't they? See how accurate YOUR "facts" are.

Q1 How many people claim ESA in the UK?
A) 2.6 Million     B) 4.7 million     C) Everyone except me and my hard working family. 
Answer : 2.6 Million. This figure has not risen since 1997

Q2 How much is ESA per month?
A) £388.45     B) £732.80     C) £3,650.12 including a company car and a free house. 
Answer : £388.45 per month. If your partner works, you get no other benefits at all. 

Q3 Is ESA means tested?
A) Yes     B) No     C) Don't be silly. Millionaires can claim it. 
Answer : Yes. If you have more than £10,000 in savings, you do not qualify for ESA
If your partner works, you too will not qualify for ESA for more than a year. 

Q4) ESA is means tested. How much can a couple earn before they lose all ESA?
A) £26,000 pa     B) £16,000 pa     C) £5343 pa
Answer : If household income is above £5343 pa, you will lose all ESA after a year. 

Q5) What is the rate of ESA fraud according to the governments own figures?
A) 0.5%     B) 15%     C) 93%
Answer : 0.5%, around 13,000 people. 

Q6) How many people do you think are really fit for work but claim ESA instead?
A) 9%     B) 43%     C) 93%
Answer : If fraud is 0.5%, one would imagine the % losing their benefits would be around 0.5%, but in fact, the government are forcing 93% of previous claimants into work. 40% of cases go to appeal with up to 70% of the original decisions overturned.

Q7) Is ESA easy to get?
A) Quite, your doctor just signs you off. 
B) Yes! Anyone can get it, they just tell the DWP their back hurts. 
C) No, you must fill in a 40 page form and attend a harsh face to face medical.
Answer : C) Almost no-one (just 7%) qualifies for ESA on a long term basis.

Q8) What costs more :
A) Scroungers on the Sick     B) Tax avoidance     C) Bankers
Answer : C) Bankers cost us £1.4 Trillion, Tax Avoidance costs around 40 Billion per year, ESA is 12 Billion

Q9) Can you work and claim ESA?
A) No     B) Sometimes     C) No, but they all do!!
Answer : A) No. ESA is an out of work benefit. 

Q10 Do you believe we should pay ESA to those who are genuinely sick?
A) Yes, of course     B) Maybe     C) No! Survival of the fittest, the weak should live in workhouses
Answer : A) I have never met anyone who says they don't believe we should pay benefits to those who are genuinely sick. Odd then that we're standing by unconcerned as 2.4 million people out of 2.6 million have ESA taken away.

So then, how did you do? 10 out of 10? Thought not. There are answers to this quiz that shocked me and this is what I do!!

**What can you do to help today? This is a light-hearted bit of fun. Please send it to the most rabid right wing, Daily Mail reading, stereotype-abuser you can think of. We will never break these myths down unless we challenge them. (Obviously remove this comment first of they might not be very happy ;)  )
Originally posted by Sue Marsh here 

Wednesday, March 09, 2011

"It's the politics" Innit.

The sweeping changes and cuts brought in by the coalition government affect those of us who are sick and disabled earlier than those not yet sick or disabled; we're a bit like the canaries miners used to take underground as they were more sensitive to the lack of oxygen and toxic gases than humans, if the canary passed out it was time to run for safety. In this case sick and disabled people are the little yellow birds the rest of the population should be watching closely to see the impact of the changes to the NHS, welfare, social services and all our vital public services have on us as a salutary warning of things to come for everyone.

Yesterday, after much dithering about a dislocation that had remained stubbornly dislocated for about 10 days and concerns about nerve damage or stress fractures, I finally conceeded I might need medical attention and phoned my rheumatologist's secretary to see what my doctor advised. You can always tell a good, well liked doctor by the quality and manner of their staff - typically if the secretary is friendly and helpful it's because the doctor they are working for encourages that kind of atmosphere. My rheumatologist is lovely, as are his staff. I explained the issues to the secretary, who assured me she'd make some enquiries and left me a phone message an hour or so later to explain what she'd done and that a specialist nurse would phone me to discuss the situation. So far, so impressive.

Until the specialist nurse phoned. The nurse was very nice and obviously keen to help, but I knew when the advice started with the words "It's because of the politics" that things weren't going to go according to plan. The nurse advised me to stay away from A&E, which is usually the most sensible advice for those with long term chronic conditions, but in this instance the boundaries are blurred as to what's the most appropriate way to access care. Instead, 'because of the politics' I was told to go to my GP and get him to examine my wrist, then refer me for an x-ray as an outpatient. I was then to attend the local hospital for that x-ray, wait for the results to be returned to my GP, then my GP was to refer me on to orthopaedics. So that's likely to add up to 2 appointments with my GP, a very confused GP wondering why it's suddenly his job to rule fractures in or out and when he last had to diagnose a fracture, my GP spending time on paperwork and referrals, then being sent an x-ray far outside his field of expertise to decide on an appropriate course of action and then more paperwork and referrals.

At this point in the conversation I knew what would happen if I took the problem to my GP. He'll look at me a bit blankly, probably scratch his head, then he'll ask me what I did to my wrist and what I believe the problem to be. He won't examine me as it's utterly pointless and will ask me where and who I need to be referred to. Weighing it up yesterday afternoon I decided that quite frankly even if my wrist has stress fractured, or if there is nerve damage, the amount of spoons I'd have to expend on all those trips to the GP and hospital would be far better spent ignoring the problem and staying at home with my wrist braced healing.

I saw my rheumatologist for the first time in December, when, because of his concerns about the severity of my condition he put me down for three monthly reviews, meaning I should be seen by the consultant some time this month. Except, they're running behind. Approximately six months behind. I asked whether this would mean I was seen six months after the initial appointment or nine. Apparently there's no way to know but it will probably be sometime between the two, so I'm looking at not seeing my rheumatologist until some time later in the summer. Which seems both a shame for me personally and the NHS as a face to face appointment with my rheumatologist might avoid the need for any x-rays or multiple referrals to other specialities with no experience of Ehlers Danlos Syndrome. It's fair to say that rheumatology was struggling under the previous New Labour government as their obsession with targets also meant an obsession with 'cures' and so surgical specialities enjoyed the increased finances while the more time demanding medical specialties sighed and tried to make the best of the situation for their typically more sick, disabled and dependent patients. However, despite those difficulties, last time I was put on three monthly reviews by rheumatology I was seen fairly close to that three month target, which kept me from spiralling off to other expensive referrals and specialities.

But, "It's the politics" innit. And like the canaries of old we sick and disabled people are frantically flapping and tweeting about, hoping desperately that those of you not yet sick or disabled will see and hear us before we keel over and the public realise it's not just that it's too late for us, it's too late for you too.

Update: 0918 I'm publishing below the insight a frontline GP gives in my comments section into the reasons for these delays

"Hi there BG.

If anyone's trying to suggest to you this present difficulty is down to GP commissioning they're telling monster porkies. GPs won't be commissioning for at least 12 months yet. The pCTs carry on as normal til then (at least in theory) and GP consortia haven't even begun to look at their service specs for any clinical areas yet. Most of them have barely formed. The delay is all at the feet of Mr Lansley and your present trusts, PCT and Hospital. The targets for waiting times have been abolished. The "ringfenced" NHS budget is anything but, and if your Hospital Trust is anything like two of ours locally, they're looking at "efficiency savings" of anything upwards of 10% (or 20 plus million smackers-- each), and so they start playing bingo with the appointment system-- refusing to cover staff absences with locums, cancelling clinics left right and centre, and once you've cancelled a clinic the *minimum* the appointments will be deferred is another 4-6 months because of the way the system "works".

But of course none of that matters when you've got the massive smokescreen of "It's not us it's the GP Commissioners, honest!" And especilaly so when the Meeja buy into the lie hook line and sinker.

Yours in despair,

Doc J "

Update: 1402 Home from A&E with a plaster cast and broken scaphoid. Thanks to all the fantastic staff at Wirral Hospital's A&E who were lovely & had me seen, treated & discharged in around 3 hours. Oh and for listening to my radio interview this morning!

Monday, March 07, 2011

Left Out In The Cold - Press Release

“We don’t want to be ‘Left Out In The Cold’ ”, say Britain’s disabled people.
On the eve of the second reading of the government’s controversial Welfare Reform Bill on 9th March, a stark image of disabled campaigner Kaliya Franklin aims to convey how vulnerable some of the bills proposals will leave sick and disabled people across the UK.

The photograph depicts a naked Franklin lying on the sand on a wintry beach, next to her empty wheelchair.

Just like Franklin’s wheelchair in the image, social care and support will be left out of reach for many of those most in need if these reforms go ahead, literally leaving many “Left Out in the Cold.”

“We decided to use one thought provoking image to make our point,” explains Franklin. “Sick and disabled people are often left voiceless in society, so we hoped using a single image might reflect this.”

Says Franklin, “It’s vital we all remember we are just an accident or illness away from becoming disabled. Many people think if they do become disabled that the state will look after them.

“But the fact is that even under current provisions, disability benefits are not enough for disabled people to live on. If the Welfare Reform Bill is passed, the situation will become unimaginably worse.”

In January, Franklin released a video on YouTube that explained how able-bodied people would be in for a major shock if they found themselves needing to apply for disability benefits. The video can be seen at

The Broken of Britain group has been campaigning since summer 2010 to raise awareness of the government’s wider anti-disability policies. The group has consistently drawn attention to disabled people being the target of unjust government rhetoric and sham consultations, tabloid slander and political myths.

It says: “We are now the targets of deep and damaging cuts to disability services that are contained in and symbolised by the Welfare Reform Bill. The Bill disguises cuts and changes to a number of benefits, from housing benefit to Income Support that will punish disabled people.”

Notes for editors

1. Kaliya Franklin and other case studies are available for interview.

2. A high resolution version of the campaign photograph is available on request.

3. For more information, contact Rhydian Fôn James at or 07774021785, or Kaliya Franklin at 07714208602

4. Contribution-related Employment Support Allowance will be restricted to 365 days, meaning that a married claimant would be unable to claim after a year if their spouse works.

5. The Welfare Reform Bill confirms that Disability Living Allowance will be replaced by the Personal Independence Payment which will use unfair assessment and conditions to disqualify 20 per cent of the current DLA caseload.

There is no evidence that supports government’s claims that DLA is “broken” and in need of reform. In fact, most evidence suggests that DLA is an efficient and popular benefit, and this support includes the vast majority of the DWP’s own research.

The inclusion of this benefit change in the Welfare Reform Bill took place before the consultation on DLA reform was completed.

6. Other cuts to disability services not included in the Welfare Reform Bill are:

• Plans to remove security of tenure from social housing tenants, as costly adaptations are a barrier to moving regardless of size of property.
• Many changes to the provision, entitlement to and charges paid for receiving social care and disability services provided by local authorities.
• The Independent Living Fund which provided for the highest level support needs in combination with the local authorities is now to be scrapped without consultation.
• Access to Work reform redefines what it is "reasonable" to expect an employer to provide for disabled staff, meaning it is likely to push many currently employed disabled people out of work and back onto benefits.

7. Disabled people are more likely to live in poverty than any other group in the UK and more likely to be unemployed or in low paid jobs. 60% of those with a work-limiting disability are unemployed, with 25% wanting to work.

Creative Commons Licence
Left Out In The Cold by Kaliya Franklin is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 3.0 Unported License.
Permissions beyond the scope of this license may be available at

Sunday, March 06, 2011

The Final Countdown

It has been a truly hectic week for all here at The Broken of Britain Towers. We have been putting the finishing touches to a new national campaign that launches on Monday. The campaign will aim to oppose those provisions of the Welfare Reform Bill that are 'anti-disability'. There is a lot of support for this campaign, and we know that you will hlp us make it a success.

As part of the campaign, there will be a debate in Westminster Hall on the reform of Disability Living Allowance on the morning of the 9th of March, a couple of hours prior to the Second Reading of the Welfare Reform Bill. The Second Reading is the first opportunity for the House of Commons to debate a Public Bill. This means that the debate at Westminster Hall, from 9.30am - 11am, will give MPs a reminder and primer on the issues to raise regarding Disability Living Allowance.

Finding an MP willing to request a debate at such an opportune timing was a major coup, and we hope that many MPs will participate. I will be briefing the organiser of the debate, Hywel Williams MP, early next week, so that he can decide which issues to discuss and where he wants to steer the debate. For this briefing I will need your help and input, so that I can suggest points to be raise from all disabled people and not just myself.

Please visit The Broken of Britain forum to leave your suggestions on points you want to see raised during the debate.

By Rhydian 

Tuesday, March 01, 2011

I'm fine!

I made a bit of a pact with my friend Sue who writes Diary of a benefit scrounger that we would make sure to write regular 'how I am' updates. Typically for two spoonie scrounger types we've either not had time or not felt well enough when we have had time to do a very good job of it. So this is me making up for it. Sorta. I'd go and get a cuppa if I were you and come back once I've finished rambling, it's awful dull.

I went for a deathwalk today. Having had to be rescued by half the neighbourhood recently my friends have expressed concern about my deathwalking alone. So, typically I ignored the advice, went out on my own anyway and got stuck. Having friends in all sorts of places meant that Roland was able to call up another friend who's a paramedic to come and collect me, which all sounded really easy. Except some poor child had the audacity to need an actual paramedic at the same time I needed a lift home so Roland had to come and get me himself. But that was last week - I think. Today I opted for the RNLI option when I got stuck half way through my deathwalk and sat in the lifeboat station with a drink of water until I could make it back home. I'm writing all this I can see my friend's points. Sort of.

But I am still fine. Or so I keep saying. There's not alot else to be said really. It's just the way it goes for those of us who live with chronic illness or disability and what might seem extreme to you is routine to us. At the moment being so wobbly I look like I'm having a seizure is common place and because my muscle tone is so poor I slump over even more than usual when I sit. Lovely Carer hasn't mentioned anything about weight loss, which is understandable as she still has PTSD from the last time I ended up weighing all of 30 kilos, but I can tell she's concerned as every time she's here she insists on putting food infront of me.

I'm really dislocatey too. Most of my dislocations reduce themselves almost immediately, but come out of the socket too far to be classed as true subluxes. They all hurt, but only the ones where I can feel vertebrae sliding about in my upper neck really scare me. After one neighbour rescue I had to reduce both shoulders, both hips, both knees and assorted other ribs and spiney bits, something I do more times a day than I consciously register so I forget how it impacts on others and was surprised by how my neighbour's eyes filled with tears at the noise.

I'm also more forgetful than usual, so if there was supposed to be a point to this post I'm really sorry but I've forgotten what it might be...