Wednesday, May 25, 2011

The "We're Fine" Update

And from the whole of the Broken of Britain team I can say we are. Fine I mean. Ok so one of us has just got out of hospital from yet another infection, one of us has a 'wonky' heart, one of us has just moved and is suffering the increased health consequences, one of us has been diagnosed with dehydration, malnutrition and exhaustion, and another has a chest infection. But we're spoonies so we're all fine. 

To us 'fine' can mean not knowing what day it is, what our own names are or where we are. It means the people who love us standing over us with fear and worry etched on their faces, begging us to slow down, to see a doctor. It means those who care saying with broken resignation in their voices " but it shouldn't be like this, this is Britain". It means sitting back and watching us deteriorate until we have no strength left to argue otherwise, overruling and sending for the doctor. But still we'll tell you that we're fine if you ask.We'll probably even claim we're fit for work when we're like this, to us it's just a natural consequence of the risks we all knew we were taking with our health by campaigning but felt we have no other option but to continue anyway. 

To help you understand our 'fine' it might help to explain that not all of the 5 of us will live to see the end of this fight. Our conditions vary, but we are united in our shared understanding that this battle is bigger than each of us, more important than our individual lives, that it is literally a war we will wage with our dying breaths to protect those who we know will come after us, those we wish a better future for.

But it is a war with huge, terrible costs associated. Not bullets and bombs but no less lethal all the same. We step back and regroup because we have no choice, our bodies are weakened by the ferocity of attack against us. When ordered to rest we fret and worry about those with no-one to care for them, to fight for them and through our delirium insist on trying before falling back in a grudging, tactical retreat. 

The energy to fight will always be found - it's taken 3 days to write this much. To try to explain to you that this is the reality of 'fit for work'; that no matter what we do, what efforts we go to, we fight this because it is wrong. It is wrong to traumatise sick, disabled and dying people already living difficult enough lives for being unable to manage their bodies or minds well enough to sustain work.

But please don't believe that we are 'fit for work' or even that it's true when we insist to you

"we're fine" 

Sunday, May 22, 2011

Welfare For The People, By The People - A Consultation

Did you ever wish you hadn't started something?

When I started this blog, I had some hazy idea that perhaps I could share my stories and it might help other sick or disabled people to feel connected. I thought I'd tippety-tap away now and again, saving my poor hubby the trauma of 24/7 news bulletins and political rants.

I didn't for one minute think many people would notice. I'd used the odd forum here and there and imagined a kind of cosy support group where "spoonies" "sickies" and "crips" could enjoy reading the ramblings of someone who actually "got it"

I didn't think I'd find myself reading endless transcripts of a dangerous and callous welfare reform bill. I didn't think I'd be on radio shows or in national newspapers opposing cabinet ministers. I didn't for one second imagine my blog would shoot into the top 50 political blogs and stay there and I certainly didn't think I'd be invited to the Compass conference next month as a guest speaker.

And that's just the stuff I can tell you about!!

You may have noticed fewer posts lately and if you knew the stuff I can't write about (though I will) you'd see why blogging is having to take a bit of a back seat.

I've always liked to learn and OH MY GOD have I been learning. In just over 6 months, I've read just about every theory put forward on welfare reform over the past two decades. I've read Blue Labour, Purple Labour, Policy Exchange, Progress & Compass reports, everything written by Iain Duncan-Smith, James Purnell, Frank Field and Jonathan Rutherford**.

Shall I sum them up for you in a natty soundbite?

"I despair"

Or another?

"Get a bigger stick, throw away the carrots and beat 'em to despair"

I read their "proposals" with incredulous dismay. I wonder just how many have ever actually experienced any of the problems they wish to solve. From the mid nineties, politicians who timidly took the first steps towards reducing the welfare bill have been encouraged to "think the unthinkable" and over the years, they've forgotten that it was ever considered unthinkable in the first place. The "unthinkable" is now not radical enough and, as I write on an almost daily basis, we've reached the tipping point. We are on the brink of removing sickness benefits altogether and disability benefits are to be slashed so far, that sick and disabled people have only the last resort of our judicial system.

We have reached a stage, where only the Human Rights Act or the European Court of Appeal can save us now.

Why? How has it come to this? When asked to "think outside the box", why did every last politician think inside a tiny, claustrophobic box tied up with ignorance-string? How did the "scrounger" narrative get such traction? Why did every last politician consider how to throw us off benefits with little care or concern for where we will go? Why did a succession of Oxbridge educated men choose to focus on a mythical hoard of cheats and skivers, convinced that with bigger and bigger sticks we could be forced into work? If fraud is just 1/2 a percent, what convinces these men that most could and should work? When medical evidence assures them that many of us can't and, in fact, work will make us worse, why do they ignore it?

Now let's see how successful they've been. Since 1994, successive "work programmes" and schemes have been rolled out to get sick or disabled people back into work. Has the welfare bill gone down? Has business embraced us and modified their structures to include us? Have the private companies, paid billions to find us work been successful?

No, No and No.

Not one single thing has changed in 25 years. The sickness and disability benefits bill has stayed stubbornly constant and work programmes have pathetic success rates of between 8 and 15% (almost identical to the number of people who find work on their own)

The solution? Cheat.

Change the descriptors, make certain that fewer people will qualify and break a million eggs to make a rotten omlette. Since Labour started "cheating" in 2008 the rate of those claiming sickness benefits has fallen. Now the Conservatives are about to cheat in such a spectacular way that the financial bill will certainly go down dramatically, but at what cost? Using the model of the past 25 years, this will be considered a "success" as costs will finally be cut. Eureka!! All they needed was one almighty stick and a sneaky bit of legislation or two that effectively all but stops sickness benefits altogether.

One might think that if a government are serious about stopping sickness benefits, they would have their best thinkers devising plans to make sure that the people affected had somewhere to go. That they wouldn't be left to starve without some pretty cast iron guarantees that there would be an alternative. One might think that there would be research available to prove that pulling support would in fact be empowering and manageable, but there is none.

Having said all this, we're no closer to finding out "why?" politicians are convinced that we can all pick up our beds and walk - or are we?

Ladies and gentlemen, I give you the "Psycho-Social Model"

Allow me to paraphrase. (The link above will give you the scientific stuff, I'll just put it in Sue-speak.)

We are all sick or even disabled because we choose to define ourselves as such. Despite our various diagnoses, those that manage to work have a better psychological grip of reality and do not become "victims". We choose to stop working from a lack of confidence or fear of failure and become lazy and plagued by doubts. The longer this fear develops, the less likely we are to find work and stay in it.

Any symptom, and disability can be overcome through perseverance and the right mental stance - we simply need re-training in our attitudes. Hence the conclusion we reach today, where you ask what work you can do, not how your illness or disability limits you. Those unwilling (remember none are unable) to find work they can do will be abandoned.

Time Limiting ESA will enshrine this in law. If you haven't overcome these "psycho-social" flaws within one year and found work, the state will wash it's hands of you. That's why the language speaks of "helping" us into work. The paternalistic state will stop our metaphorical pocket money and take away our sweets if we are disobedient. If "encouragement" doesn't work, there are a whole host of sticks to beat us with.

This also explains an assessment that focusses solely on what we are physically able to do and ignores any  pain or symptoms or distress. Pain and symptoms and distress can all be overcome according to the psycho-social model, they are simply a part of our psycho-social weakness; shields to keep the world away, to wallow in our own helplessness. If you can swallow or do up a button or pick up a penny, you must, no matter what it costs you, or you are simply allowing neurological impulses to get in the way of a full and financially productive life.

It might not surprise many readers to find that Frank Field and James Purnell are the most zealous advocates of a psycho-social approach to welfare. Reading my red-top precis, academics may nod sagely, believing there is much to recommend the theory. And that is the vast, putrid, hideous, terrifying problem.

If you don't have MS or bowel disease or cancer or schizophrenia or alcoholism or parkinson's or lupus; if your research is conducted in an academic bubble of theories and sociological studies and think-tank jargon, you might as well be designing policy for fish. However much an affluent, out-of-touch politician might think a theory is the answer to all their prayers, you simply cannot make an unsound theory fit reality without cheating.  An alpha-male, who has sailed through life without physical trauma, poverty or disadvantage, will simply be totally unable to empathise with the nuances of suffering. They can no more design a welfare system that works than I could design a new offside rule.

Until sick and disabled people start to put forward their own suggestions, their own answers, we will remain in the hands of ignorance and arrogance. Until we are at the heart of policy making, we will suffer policies that may as well have been designed by aliens. The time has come where it is no longer enough to oppose, we must educate and inform. We must save ourselves, because my endless nights spent poring over welfare papers has convinced me that we have no alternative. Privileged academics and politicians have proven themselves horrifically incapable of even beginning to understand our lives and if we are to get a welfare system that actually works for us, we need to start making suggestions. We have the experience, the knowledge and the understanding and they never will.

So today, please use the comment thread below to explain what would help you. Contribute your ideas and suggestions no matter how silly or unformed you think they are. Share your stories of trying to work and how the system has failed or supported you. Make them essays or make them just a few words. I don't care how long or short they are. Tell me what work you could do and what support you would need to do it. Does the state itself trap you? What could business do to enable you? Is there a working model that could suit you? What type of work would you like? Why is it unavailable? Do you want to work? Would it make you better or worse? Would it increase your affluence or plunge you further into poverty? In an ideal world, what would governments be doing to support you?

Remember, this is a brainstorm. Write anything. It can't possibly be more banal, mis-guided or unworkable than the suggestions of successive politicians.

Please help. Join in, engage, show politicians our endless strength, our great value and our hopes and dreams. Help me and I'll do my very, very best to help you.

As I started this article by explaining, I have been given a voice. I have the privilege of a platform. It's your platform too and I need you to share it. Otherwise, I might just end up as another mis-guided fool who thinks she knows it all. I can speak for myself, but I can't speak for you.


*Finally, please share this article with anyone you know who suffers from a chronic illness or disability. Urge them to contribute to the consultation, tweet it on twitter, share on Facebook and email to friends. Any consultation is only as good as the people who take part. It needs variety and balance. Thanks. 


**Rutherford is the one beacon of hope. He exposed the psycho-social model and opposed incompetent welfare reform before most of us knew it existed. Read more here 

Wednesday, May 11, 2011

We Have A Dream Speech #hardesthit




We have a dream. This is our dream.

Three score years and six ago the welfare state was formed. A vision of Britain as Jerusalem for all, a beacon of hope in a country battered and bruised by the ravages of war. Principles so important that despite the crippling debt of the post war years, our grandfathers and grandmothers made sure their dream of a society caring for all was a priority. Despite two world wars and countless people disabled in the pursuit of justice it took another 25 years for disabled people to start our own road to freedom..  
Now is the time to remember the founding principles of the welfare state. Now is the time to rise up. Now is the time to remember ‘rights not charity’ Now is the time to make equality of opportunity apply to all people, now is the time to measure our worth in talent not gold. 

It is obvious that Britain has defaulted on it’s promissory note of welfare for all, a famous note signed by Lloyd George, Beveridge, Attlee and Bevan with their hopes and dreams of a better world, a fairer future for all. A beacon of hope carried forward some 25 years later by Lord Morris with his Chronically Sick And Disabled Persons Act , the first in the world to recognise and give rights to people with disabilities. 

We refuse to accept a system bailed out by the taxpayer is so bankrupt it can no longer meet it’s obligations to the basic welfare of all people. 

We refuse to believe in a world which bankers choose to increase bonuses whilst disabled people choose between food and heat. 
We refuse to believe local authorities deem it right and proper to save money by leaving old ladies overnight in their own urine, we refuse to believe that removing respite care can be right. 
We refuse to believe that we should be blamed, targeted, made less human by those who sip from the cup of success.

It may now be a nightmare, but we too can dream. To dream is a right for all humans and the first step on the road to justice. Without our dreams we have no hope, and we all have hope. Our rights, our dignity, our existence can all be threatened, but the flame of our hope cannot be extinguished. The hope of a world in which all people are seen as human first, human, with fundamental rights; to eat, to drink, to live, to love, to be free, to dream. We can dream of a day when all children grow together, learn together, play together regardless of ability. We can dream of a day when those children become adults, accepting adults who see the world as equal, a world of ability not disability. We can dream of a world of people with the right to have their basic needs met in whatever form they arise.


We are asked “when will you be satisfied?” We can never be satisfied as long as those rights, first enshrined in statue are under threat.  We can never be satisfied as long as disabled people are victim of unspeakable horrors. We can never be satisfied as long as we remember Fiona and Francecca Pilkington, driven to such desperation by disablist bullying that suicide seemed their safest place. We can never be satisfied as long as we remember Christine Lakinski, urinated over as she lay dying in a doorway. We can never be satisfied as long as we remember Colin Greenwood, kicked to death by teenagers he couldn’t see. We can never be satisfied while disabled people kill themselves for fear of the DWP. We must embrace our diversity, our differences, our talent and work together until we can dream the dreams of all.
We can never be satisfied as long as our bodies, heavy with fatigue cannot gain access to the transport, to the workplaces, to the leisure spaces of our cities. We can never be satisfied as long as our children are segregated, denied appropriate aids and parents broken by the lack of support.

We make to you this promise. We will not cease from mental fight. Nor shall our pens sleep in our hands. Til we have built a new accessible Jerusalem. Til we have built a Jerusalem we can again be proud of, in England’s green and pleasant land.

Sunday, May 08, 2011

Imagine?

I appear to have had a party last night. Judging by the empty bottles of Malibu, Baileys, Brandy and Vodka sat in my kitchen, the rhubarb jam and dog chews in the garden it was a good one too. My neighbour's were drinking something called 'Bailey BooBoos' a sticky mixture of Bailey's and Malibu which I was far too sensible to even sniff at. It's a nice feeling to be the most well for once - even though I'm exhausted, in pain and coughing the lack of alcohol and early finish must've left me in far better condition than the drinkers.



It just sort of evolved - the best kind of party. Sitting in the sunshine for half an hour turned into more hours, more neighbours, take out food and alcohol. I fear we have now become the chav scum house of the road, sitting in the garden drinking, sometimes in our pyjamas and yesterday eating take out food outside. It's very Big Society and fortunately the neighbour's won't complain because they were there. Which amused all the drunk neighbour's as I got stressed last night on the grounds that we DO have other neighbour's who might not have appreciated our renditions of Del Amitri quite as much as we did. Mind you, the fact that we stayed outside while it was raining, determindley wrapped up in blankets as some sort of 'rain warding offer' talisman might mean they all think we're so bonkers we're not worth asking to be quiet. Or kept happy by the party finishing long before pumpkin time. Maybe.

Something was said last night which stood out from all the other somethings. We don't really talk about access or adaptations when we're all together; as we tend to socialise at home it's just naturally enabling and people offer help as and when I need it. Being in my flat during the evenings helps me as I can go straight to bed when I need, knowing that people are there to assist with anything I'm too tired to do and will turn up the next day to clean up and work off their hangovers. All just part of being friends and acknowledging other people's needs in whatever form they arise.

So when the subject of Dolores' hen night came up and ideas were discussed there was one sentence which summed up this philosophy. "Whatever we do, I want it so that Bendy can be there". Twelve words which say and mean everything. I was so touched I had tears in my eyes. The hen events will be planned not just so that I can join in with the activites, so that I can access the venues, but also so that it's at a pace I can keep up with, resting when needed. Because I'm wanted there. Wanted enough to change everything around if needed.

Just imagine what the world would be like, what the possibilities would be if disabled people were wanted by everyone, everywhere as much as that...

Friday, May 06, 2011

Time To Speak Up

 Time To Speak Up, originally posted on ABC Ramp Up and cross posted here with kind permission, thank you.
It's important to remember that as disabled people we are fighting these battles across the world, our Australian cousins need us more than ever now that James Purnell is peddling his poverty pimp plans Down Under.

When I realised that there was going to be an NDIS (National Disability Insurance Scheme) discussion at my university, Latrobe Bundoora, I was pumped-up and excited. 

The discussion was to be hosted by Professor Robert Manne as part of the Ideas and Society Program of debates and public lectures. Many big guns in the Australian disability sector were speaking. John Della Bosca (Every Australian Counts), Dr Rhonda Galbally (Chair of the National People with Disabilities and Carers Council), Jim Mansell (Emeritus Professor of Learning Disabilities) and Bruce Bonyhady (Chairman of Yooralla) were the orators at the event.

As I said, I was excited - there was a relevant discussion being held on my campus at an extremely convenient time for me! Unfortunately, I almost missed out on the event due to a surprising lack of promotion. The equality and diversity centre on campus had no flyers up, and it was only due to my procrastination leading me to find a notice on a nondescript pin board that I discovered the event. From the lack of promotion, anyone would think they didn't want anyone to attend at all.

When my class finished I leisurely drank a cafe latte in the sun until it was time for me to head over to the building where the talks were being held. When I entered I was stopped by staff and told that those in wheelchairs should wait to be seated in the designated positions. But I'm postgraduate, I do what I want - I'm cool in that way. I said thanks, but told them I would find my own seat. Making my way to the front I noticed a distinct lack of disabled people, was I early? They weren't waiting in the foyer either.

And yes I know many disabilities are not visibly obvious, but still, I was pretty surprised to be the only guy in a wheelchair. Surely my disabled compatriots wouldn't be too far off, after all, it was only a three-minute walk from the coffee shop.

In the crowd there were plenty of men and women in suits, though I wouldn't have thought they were the target market for this discussion. I waited patiently as more suits shuffled in along with a fellow wheelchair user. That's better I thought, but still, only two wheelers? The main attractions then arrived, taking their positions at the table. Rhonda luckily brought her portable ramp in order to reach the stage, saving much (deserved) embarrassment for those who organised the event. Regardless, things were about to get interesting.

A cavalcade of wheelchair users and people with Down Syndrome then entered the room all at once. Coincidentally, the cameras had begun rolling. I feared a standing ovation, but luckily that didn't come to pass. 'The disabled' went to the designated seats where I was supposed to be - near the back, like in the cinema.

I was shocked that I didn't recognise anyone at all from my university, let alone any fellow disabled students. I would have assumed at least one or two would attend, but I was wrong.

Bundoora is by far the largest campus of Latrobe University, and it would be a safe bet to say that there are at least 15,000 students. I could count maybe one or two people in attendance who I would hazard a guess as being students (no suits), in addition to me. And none of them 'looked' disabled.

Disappointing.

Still, I was there for the speeches and discussion, not to analyse the crowd as was taught in my market research subject. And the speeches were great; the audience was told that the disability support system in Australia is "underfunded, unfair, fragmented, and inefficient, and gives people with a disability little choice and no certainty of access to appropriate supports." I nodded my head in acquiescence.
My cynical marketing brain went to work. I couldn't help sense a degree of detachment from the issues in Bruce, John and Jim. From an anthropological perspective they were all big masculine men in suits, 'providers' if you will. They definitely were not the ones needing government support for illness or disability.

Little jokes were made with regard to whether the NDIS bill would get through the Parliament. Rhonda Galbally wasn't smiling at these jokes, and neither was I. And it wasn't because we don't have a sense of humor. There were no smiles because Rhonda understands the severity of the situation, and though she herself is now an extremely successful philanthropist, advocate and businesswoman - she would have definitely benefited from increased disability support during more uncertain times.

Now those reading this may suggest that I'm trying to create divisions, and to portray it as an 'us vs them' situation. That is sincerely not my goal. I did, however, genuinely sense a degree of detachment in some of the speakers.

During her speech, Rhonda raised the issue of disability welfare related protests, or rather a distinct lack of them. If a situation of underfunding the magnitude of that which exists in the disability sector was apparent in the arts or education sectors, there would be mass riots in the streets. And this isn't to say that the arts or education areas are funded adequately' it just goes to show how comparatively bad the disability sector is in Australia compared to everything (and everywhere) else!

My above point raised another issue in my mind; who exactly were the people in the audience if they were not students or people with a disability? Why hadn't there been any protests? It soon dawned on me that the majority of the crowd were representatives from service providers. Advocacy organisation representatives, charities, personal care providers and Victorian government delegates were there in spades. But where were the people with disabilities? At the back in their designated corner, that's where.

The concept of advocacy is based on someone representing you, and/or acting on your behalf. Similar to the functions of charity organisations, service providers and the like; limited staff act on behalf of a multitude of clients, carrying out their requests. Can you see the problem here?

Again, I may just be cynical, but if one advocate in an organisation represents 20 people with a disability, and there are 10 advocates in the organisation fighting to rectify the dire situation the strained disability sector is facing, what happens as a result? The advocacy organisation sends one letter on behalf of 200 clients, or if you are lucky, there are 10 letters mailed out, one from each advocate.
Ten letters delivered, not 200. A hundred service provider representatives in the audience at the event I attended, not 2000 people with disability. A thousand advocates in the street capital protesting, not 20,000 outraged cripples.

I understand how crude and simplistic the above examples are, but the essence remains the same. In order for real change to occur, people with disabilities can no longer palm off responsibility to our carers and advocates. We can no longer accept our shameful situation as the status quo, and if we want change we must make our collective voices heard. Be your own self-advocate, tell the general public and the government what you really want. And yes, I know this is hard, I know you're tired of fighting, fighting just to stay afloat. But if there ever was a time to struggle, it is now.

Yes, increased individualised funding may lead to many disability charities dying out. But people with disabilities don't want charity. Subpar service providers may shrivel and die, but only because of increased competition and choice. Advocacy organisations may shrink, and be required to switch their focus to solely represent those who really can't advocate for themselves. But this is a cost worth enduring for a better standard of living. A standard of living we are owed.

Don't expect your advocate or carer to attend the next NDIS meeting on your behalf, go yourself. Chain your ventilator to Parliament house in protest, park your 200 kg wheelchair on Capital Hill with your brake firmly on and don't budge. Make a stand, even if you can't stand. Make a difference. Otherwise we're all screwed and we will continue to be pitied. I don't want pity, I want respect. How about you?

Carl Thompson recently finished his Business Bachelor and now plans to relax before he joins the 9 to 5 grind. He blogs here.

Latest News From Benefits And Work

Double tribunal triumph as Atos medical report “wholly discredited”

“I came out of the Tribunal with 15 points for the ESA and an award of DLA Higher Rate Mobility and Middle Rate Care and I have to admit an immense feeling of euphoria!”
“Thanks to the information and help guides available on this fantastic site . . . the ATOS medical report was . . . wholly discredited.”
Read more.

More feedback from the forums at the end of this email

Forced labour scheme begins

Dear Kali,

Before we get to the news, we have a favour to ask.

It will take literally five  seconds of your time.

We’ve started a Benefits and Work Facebook page, partly to try to reach those people for whom Facebook, Twitter and YouTube make up most of the internet.  And partly because having a reasonable number  of people  ‘like’ you on Facebook is more evidence that you are an organisation whom people trust.

So, could you please spare just a few moments  to visit our Facebook page and click on the ‘Like’ icon near the top of the page.  You can only do this if you have a Facebook account, but if you don’t, you can just click on the Like button and sign up for a free account.

 Alternatively, you can also click on the ‘Like’ icon that appears near the bottom left of almost every page on the Benefits and Work site.

Thank you for helping spread the word!

NEWS
As what is beginning to look more and more like a war on claimants hots up, last month saw the introduction of a  ‘forced labour’ scheme.
(Members only). 

Many thousands of claimants will be obliged to work for up to 30 hours a week for a month for no wage whatsoever. There is no limit to the number of times claimants can be forced onto the scheme. Those who fail to comply will lose their benefits for 13 weeks for a first offence and 26 weeks for a second offence.

The scheme is aimed at JSA claimants, but with so many people likely to fail the new work capability assessment, that may well include thousands of  sick and disabled claimants who are deemed not to be trying hard enough to move into work.

The propaganda war is also becoming more vicious and ill-informed as the DWP feeds easy to misinterpret figures to the press and then looks the other way as hate-provoking misinformation fills the tabloids.

For the claimants on the front-line, there’s s also the shocking news of the lack of disabled access at many Atos medical centres, which most claimants are obliged to attend for their work capability assessment.   An astonishing one in five centres don’t have disabled access and Atos lists just one dedicated disabled parking space for the use of around a million claimants a year.

FIGHTING BACK
The government aren’t having it all their own way, however.  Below is a quick round-up of  anti-cuts actions over the coming month that you may want to support.

A national week of action against Atos is scheduled to begin on 9 May with a picnic and party in Triton Square*, home of their head office, at 2pm. 

On May 11 thousands of disabled people, their friends and families will be holding a march and lobbying parliament to protest at cuts to benefits and services.

The Justice for All campaign, which is fighting to save free legal advice, is holding a day of action on 3 June, which they are hoping members of the public will take part in. 

PRESS
Radio 4’s You and Yours programme is working on a report about the work capability assessment which may at least present a more honest picture of what is really happening to sick and disabled claimants.  As part of the feature they are hoping to talk an Atos health professional – anonymity assured.  If you are one of the Atos staff who read this newsletter, why not contact You and Yours in confidence?

You and Yours are also hoping to hear from people who have received a reassessment letter and are awaiting a medical or who are appealing an ESA decision.  More details here.

Elsewhere, a freelance journalist writing a piece on the forced migration from incapacity benefit to ESA for One in Four, a mental health service users magazine, is keen to hear from anyone who went through the Aberdeen or Burnley pilots or who is going through the reassessment process now.  More details.

NEW RESOURCE FOR PROFESSIONALS
Welfare rights expert Mark Perlic – who has provided free resources for this site in the past - is publishing an updated ninth edition of the invaluable DLA and AA caselaw pack in June of this year and is currently taking advance orders.  More details from this flyer.

Mark is also running DLA and AA case law training days in Birmingham and London in September and October of this year.  More details from Mark’s website.

GOOD NEWS FROM THE FORUMS
Finally, in spite of the all those bank holidays over the last  few weeks, we’ve still heard from a number of members with good news about their claims and appeals.

Atos medical report wholly discredited – both ESA and DLA tribunals won


Support group and highest care DLA on initial claim

IB and ESA appeals won

From WRAG to support group on appeal without attending hearing

Award increased to higher rate mobility and middle rate care on renewal.

From lower to higher rate care and lower rate mobility on appeal for 10 year old

Support group on initial claim

Successful DLA appeal

Successful IB appeal

WRAG on appeal

ESA from 6 to 21 points


PASS IT ON
You are welcome to reproduce this newsletter on your blog, website, forum or newsletter.

You can also read this newsletter online.

Good luck,

Steve Donnison

Benefits and Work Publishing Ltd
Company registration No.  5962666

If you’re not already a member, find out how to subscribe to Benefits and Work and give yourself the best possible chance of getting the right decision.

Thursday, May 05, 2011

Denial

Yesterday was a long and busy day. I had three hospital appointments to attend, fortunately all in the same hospital and then an interview for a documentary. Which is probably why I was grey, shaking, whining and sporting a heartrate of 120 whilst sat down by teatime. 

I saw the hand physio and specialist hand OT yesterday to get another custom made splint and decide upon the supports we need to order for my wrists. The physio and OT are concerned about 'joint preservation', in layman's terms making sure I don't destroy my joints 50 years before their 'use by date' The NHS spends a fair bit of time and money on this kind of thing, the understanding that money spent early to save more later having worked well in some services. The problem is, whilst the NHS is spending all that money ensuring my condition deteriorates at the slowest possible rate, all our hard work is undone by the lack of support in the social care sector, which means, however hard I or my NHS therapists try, there is only so much we can do to preserve my future function without practical help on a daily basis.

The main appointment was Freak Clinic. Dr FC has been my doctor since just after I was diagnosed with EDS. He's not a rheumatologist, but in the absence of continuity of care in that specialty he has overseen my care, and despite claiming he knows nothing about EDS now has a better understanding of it's impacts and how to deal with it than most rheumatologists do. But he's always had an EDS specialist he could call upon if needed, until now. Since Professor Bird retired there have been rumours of a dedicated EDS clinic in the north, but they still remain rumours. Dr FC feels, quite understandably that as a district general hospital they are out of their depth attempting to manage a patient like me, without an expert they can more readily call upon.

It was a depressing appointment. So depressing I don't want to talk about it, as that'd be acknowledging the reality of what was said. I like it better in Egypt. It's warm and they know how to throw a good revolution so I'm staying there. Writing about it to the entire interwebs however weirdly remains in the Nile territory and so is acceptable.

The words 'there is only one way this can go' were uttered. The look on my face must have prompted the clarification that actually there could be a second way, one where we keep things stable. I like that one better so we're all sticking with that and no comments to the contrary please. I explained that I'm having choking episodes more frequently and that I point blank refused hospital last time because I was scared A&E won't know what to do. An opinion that unfortunately my consultant agreed with, they won't have a clue. I could see how nervous that was making Dr FC and so that made me nervous. My reassurances that if worst came to worst I can hook out my larynx and put it back myself didn't seem to improve the mood much.

So we agreed upon a plan. The reason I haven't been seen on the three monthly review basis my new rheumatologist wanted is because the PCT (Primary Care Trust) have been refusing to fund three monthly reviews, since long before the election. The drive is to push care back on the GP's, regardless of whether the GP's have the expertise to cope, and the logical conclusion of that policy may explain the lack of funding. Maybe. My GP cannot cope with this, nor should he have to. He does a great job of being my GP, keeping track of my general health, prescribing and referring as needed while he oversees the situation. My consultant doesn't feel he or the hospital can or should have to cope alone without specialist input, he is not trying to push me off to be someone else's responsibility, the local hospital will always care for me, but they need back up to do so, even if that backup is only advice at the end of the phone. The plan is that Dr FC will talk to my rheumatologist and they will see if they can find anyone else to advise and work out some sort of plan for A&E to follow should I have to be admitted. They will also investigate whether anything is available for me to use at home, the neighbours most likely to be called upon in a breathing emergency are medical professionals and had enquired about the possibility of using something like IM diazepam to reduce the spasms. The potential problem with that is that it relaxes me so much none of my muscles work and so I stop breathing that way so specialist advice is desperately required.

And now you see why I'm planning on staying in Egypt. It really does look nicer there.

Sunday, May 01, 2011

"The Ministry of Magic has fallen. He is coming. HE is coming"

 As England celebrated the fairytale wedding of a beautiful princess and a handsome prince watched by a willing world bouyed up on good humour, pageantry, pomp and circumstance another, less visible England continued as normal. Parent's awoke filled with pride for children the world will never see as they do, princes and princesses of courage, determination and innovation achieving day to day miraculous successes not marked by champagne or celebration, but by preparation for the next battle to be fought, the next prize to be won on the long and winding road that is disability.

Today is the 5th annual Blogging Against Disablism Day and in the last year many things have changed. The Dark Lord has taken over the Ministry for Magic, installed his own Minister and embarked on an ideological war. Daily propaganda is printed and fed to a willing media about the scandal of Mudbloods; a population fearful for the futures of their own children buy into scaremongering stories about the cost to the public of supporting Mudbloods and bury their heads in the sand, denying the prospect that one day, as we all do, they too will become Mudbloods and fear the brown envelope delivered by postman not owl to inform them they are no longer considered financially sustainable.

When that day comes, despite all the warnings, all the challenges raised by those already labelled Mudbloods, it always comes as a surprise. As if being a magical person somehow protects from the dark forces of life, accident, illness, injury, despair. By the time that lesson is learnt the Mudblood file is already filled out at the Ministry, a 'useless eater' label applied and families make ever desperate attempts to protect their much loved Mudbloods from a pre-destined fate they believed themselves magical enough to escape. 

There is no escape.

"The Ministry of Magic has fallen. He is coming. HE is coming"

And unlike Hermoine, the Mudbloods of today's England have no Harry and Ron equipped with courage, compassion, loyalty and sense of innate justice to wave their wands and wage war as we are held down and labelled with Mudblood tattoos on our inner arms.  We have no Dumbledore to advise us, to leave us clues of how to challenge such dark forces and win. We don't even have a Dobby, fiercely protective to the very end, willing to sacrifice everything in the battle for right and wrong.

Instead we take up our wands, in the form of computers and keyboards to weave our wondrous words and hope that you, the as yet still magical people heed our warnings, our understanding that once just one person is labelled a Mudblood there is no end point but the destruction of all Mudbloods, labelled Mudbloods for reasons entirely beyond their control by a small group of wealthy, powerful dark witches and wizards bent on shaping the country in their image, seemingly ignorant of the fact that one day, someone they love will receive the letter informing them they are now a Mudblood too and no longer financially sustainable.