So, How Am I?

I'm great! It's cosy, warm and snug here in the land of denial. I much prefer it to the real world where we're back to thinking scapegoating and demonising various groups is an altogether awesome thing to do. Give me fluffy and fake any day over that kind of reality! So it should say something that I'm currently finding campaigning emotionally safer than confronting my personal circumstances. Ok...so campaigning has cost me a bit of health, definitely cost me any semblance of a personal life or relationship and been all a bit traumatic at times...but given the state of play elsewhere in my life that's all reassuringly stable.

I finally went to see the 'proper' NHS Ear Nose and Throat doctors. The 'faux' ENT expert I originally saw was at a private hospital, funded by the NHS. For some reason that no-one can quite discover, when my GP originally referred me the appointment defaulted to the private provider rather than going through choose and book so actually I didn't have a choice about where I went. I did have to endure a particularly patronising conversation with the booking people for the private hospital where they continually stressed 'but it's the private sector' in that 'dear god but are you stupid or something, don't you know private is best' tone of voice but I assume the costs of that are also covered by the public purse rather than it being an optional extra.

In the interests of fairness, had I been a 'worried well' type who'd suddenly lost their voice and needed to have their throat examined within a few weeks the appointment at the private hospital would've been fine. I'd have had enough time to drink the complimentary coffee and be reassured that a frog hadn't set up permanent residence in my throat. Ok, so I *still* wouldn't have had any speech therapy to remove the imposter frog from my throat, which after three plus months being able to talk properly could be a teensy bit of an issue for my employers, but that's the kind of irrelevant triviality the NHS regularly have to deal with and all a bit too much for the private sector who focus on individual frogs as opposed to their ability to colonise in throats.

However, as I'm not 'worried well' and have yet to discover how to profit from the illegal frog colony in my throat, the private sector appointment paid for by the NHS was a complete waste of everyone's time and money. So, having been back to my GP for another appointment so he could write another referral letter, that like the first referral would all be paid for by the taxpayer, my taxpayer funded care finally ended up in the right hospital. The NHS hospital didn't have any posh coffee or nice armchairs, but that didn't matter as I didn't have time to enjoy any of those facilities before I was called in to see the doctor. Really, what has it come to when NHS waiting times don't allow for reading a 10 year old copy of the National Geographic?

After some initial bewilderment by the doctor as to what on earth had happened to my voice and why there was no mention of that in the referral letter we got off to a good start. We replicated the examination already done by the private sector (a scope up your nose and down your throat for those who need mucus related details to enjoy the story!) said a few 'EEEEEEE's' and did some swallowing. Happily the NHS doctor understood what I meant by 'laryngeal malacia' as the private sector guy looked at me uncomprehendingly when I raised the subject, and confirmed it in layman's speak. Your larynx is collapsing on itself. Both NHS and private doctors had a similar look of horrror in their eyes when I explained the dislocating larynx process, but the similarities ended there. Private doc said he had no clue how to deal with that so we weren't going to even discuss it. NHS doc said he didn't have much of a clue how we were going to deal with that either...but that we'd better have a good think and come up with something!

So we did. Sort of anyway. With the understanding that I have to provide the Ehlers Danlos expertise a plan was plotted. In addition to the lazy, workshy larynx collapsing on itself and refusing to do it's job, we talked about the swallowing issues the private sector wouldn't. Upon examination there is a 'bit of a gap' when I swallow, which confirms that I'm at risk of aspirating, ie inhaling bits of food, saliva etc. Generally aspiration is filed under 'undesirable situation', but I suspect there's a special file area for 'undesireable situation with a side order of not much we can do about it'. We're working on the assumption that this is all caused by my layabout good for nothing EDS tissues, but covering all bases in typical NHS fashion by doing another test just to ensure we're not missing something. Missing something, is btw, doctor speak for 'fucking great tumour'. Neither doctor or I believe that to be the case, but we do both feel the sensible thing to do is make sure anyway.

So in a couple of weeks I'm off for a barium swallow. There was much emphasis placed by the doctor on warning the radiology department of my likelihood of aspiration before they do the test...which made more sense when translated into 'non medical' speak by my ex. "Don't inhale the barium, that counts as definitely ungood especially by the people who die from it." It is possible the test won't be done on the probability of inhaling the barium, but if it goes ahead it'll be done in an NHS hospital with an A&E and ITU departments within sprinting distance should there be any issues, whereas had the private hospital considered this option and run into problems they'd have had to call and ambulance and blue light me a mile down the road to the NHS hospital which has the 'don't die there's a dear' facilities the private one lacks.

Once I've had that test done (or not done) I'll go back to see the NHS ENT's and we'll work something out from there. They are chasing up the speech therapy referral as not swallowing properly trumps not talking properly, but as speech and language therapy was a cinderalla service pre Coalition it's generally got horrendous waiting lists. Budgets for things no-one really understands the value or importance of being the easiest and earliest to get slashed. Which is a shame for all kinds of reasons, whether it's the 6 year old who's no longer entitled to speech therapy having their adult life chances and future ability to work jeopardised by not being able to communicate like everyone else or the 36 year old hoping they won't choke to death just yet thank you.

What we will not be considering are any aggressive interventions or surgical procedures for the sake of 'doing something'. In some cases a stent would be appropriate to stop floppy tissues collapsing on themselves, but with someone who has EDS that'd be the equivalent of packing peaches onto wire wool and then wondering why they were so badly damaged by the process (imagine what a nail file would do to the soft skin of a peach for visuals!) Really this all hinges on long term speech therapy - it's like physiotherapy for your talking, breathing parts. Long term speech therapy would also cost alot less than A&E visits, repeated antibiotics and the other kind of interventions I'm refusing to think about which happen when people aspirate alot.

So yeah, I'm just tickety boo. Well I would be if that damn frog would just feck off and let me get back to enjoying denial...

The Death Of Decency #wrb

 


It's been a long, hard eighteen months. Harder and tougher than I could ever communicate to you. I could try and tell you of the times Sue and I spent hours fevered, medicated and desperately unwell just trying to string together a few coherent sentences. The times we tried frantically to finish articles for newspapers interrupted by journalists, politicians or charities wanting us to help with research about issues they didn't really understand, or the times we took turns to cry with despair about what was happening to our country which no-one but a handful of seriously ill people seemed to care about. 

I could tell you of how receiving messages from people so terrorised they wanted to tell us their lives were no longer worth living became routine. Of sleepless nights fearing that the person had gone ahead with their plans, or even of the devastating night when despite the online community rapidly rallying help we heard that the prompt police response was too late and another person was found dead. 

I could tell you that we always knew this to be an unwinnable battle. That very early on we decided that whatever dirty tricks politicians pulled we would not sink to that level. That we would always act with honesty, ensuring our facts were double and triple checked, that we would counter lies with integrity and truth. That the more justice appeared to be absenting herself from this process, the more we were determined to ensure her voice remained. 

I could tell you all those things and more, but never would you be able to truly understand how much this battle has cost those who had least to give. We have lobbied, debated and pleaded, often ignoring issues which would affect us personally as we decided on principle that we would act for the the best interests of all our community, even if that was to the detriment of our own personal lives, financial situations and our long term health. 

I could, but that's not the most important thing to say. 

The most important issue of all is the message sent by a British government to the British people. That disabled children who aren't the most disabled of all will have their support cut to 'justify' increasing the support to the most severely disabled children by less than £2 a week. That newly disabled or seriously ill adults living alone will lose the money previously deemed vital to pay someone to provide care. That children with serious illnesses and disabilities will have their entitlement to National Insurance contributions removed. An entitlement previously supported by politicians of all parties as sending a crucial message of the inherent value of life. That people with serious illnesses such as Multiple Sclerosis, early onset Alzheimers or cancer will, after 12 months, no longer be entitled to the financial support they spent their working lives paying National Insurance for if their partner earns more than £7500 per year. 

I could tell you of how this was sold to the British public. A people with 'it's just not cricket' hardwired into our DNA. Of how carefully, deliberately, knowingly successive governments moved from all agreeing that it was inhuman to demonise the sick or disabled to carefully, deliberately, knowingly, drip feeding a complicit media into a propoganda exercise stunning in its success, to label these very same people as unworthy of empathy, compassion or support. Of how calculated this rebranding exercise was to ensure the public believed the empty promises of 'always supporting the most vulnerable' because, after all, these people are mostly faking fraudsters anyway. Doesn't it say so in the papers, on the news, even on the BBC?

I could try and explain to you that this isn't about eliminating fraud, that this will affect you or your family when inevitably accident, sickness or ageing moves you from being 'not yet disabled' to 'one of us'. I could try, but that's the nightmare of 4am no-one wants to remember when they awake. I could tell you that understanding, that empathy, that sense of life altering devastation is an insight that will only come to you when it's too late. 

I can, with pride, tell you of a demonised community who have found strength in each other. I can tell you of how inspiring it is to feel the love and support of these people, and the awesome sense of privilege in witnessing the broken come together. I can tell you of the values we all grew up with, principles our ancestors fought for, our playground guilt as we were chastisted for hitting the bespectacled child. 
I could tell you of how bewildered we have been to witness a British government act in a manner more befitting China. I could tell you how each deliberate lie, each serpent tongued statement and guarantee of consultation rankled and oozed. I could tell you that something fundamental in us was mortally wounded when finally we produced cold, hard evidence to prove the government were saying one thing and doing quite the other, to then witness the government's nose grow proportionately only to it's falsehoods. 

I could tell you that actually, this is not about the money. That the financial cuts will be detrimental to lives, but that the message the government have sent to the British people, that the weakest, the frailest, the most vulnerable are no longer worthy of collective support will be rejected once that same public understand that message. 

I could tell you all of that, but over the next few years you will discover this for yourselves. So all I will tell you is this;

Something fundamentally British died yesterday. If you thought it was already dead, think again. 

Vote With Your Hearts #wrb & Don't Leave Disabled People Out In The Cold

Vote with your hearts, and don't let the Welfare Reform Bill leave disabled people out in the cold...


Image shows a naked disabled woman lying on a snowy beach unable to reach the attendant wheelchair next to her

Vote With Your Hearts #wrb

Today, at 12.30pm the welfare reform bill will return to the House of Commons.

Let's be very clear - it is a dangerous, incomplete bill based on flawed evidence and unpleasant ideals. It is vast and impenetrable - most of the ministers arguing for it have very little understanding of the detail within it. Yes, that's right, they don't understand the details or effects of their own policies.

The welfare reform bill will affect every one of us, not just the "feckless scroungers" the government have led you to believe. Child benefit will be cut, tax credits for "hard working families" will be cut, tax credits for disabled children, NI credits for disabled children, we will all eventually be transferred onto Universal Credit where both parents will be expected to be in full time work when their children reach the age of 12. Everyone will face sanctions.

Make no mistake - this bill fatally erodes the already inadequate social security provision we have in the UK. For all the big numbers the government like to toss around, we have the lowest levels of benefits and the toughest sanctions of any developed nation. This bill is the tipping point. People are going to die and we've done everything - and more - that we possible could to highlight the most dangerous areas.

The House of Lords is described as:

"A forum of expertise, making laws and providing scrutiny of Government"

And so we've found them to be. The Lords is packed full of ex-CEOs of charities, disabled members and those who have enjoyed full and varied careers before becoming peers. They analysed every line of this bill carefully and thoughtfully. They were concerned by the same areas that concerned campaigners and charities alike - the dangerous parts. In fact, they were concerned by many, many more aspects of this bill and only the most disgusting, pointless, cruel clauses have been overturned. Many amendments were argued for passionately yet withdrawn after reassurances from the minister.

And we are still left with a dangerous bill. It may just be slightly less dangerous than it was.

-What has been amended? Well, if you fall desperately ill, you will now have at least 2 years to recover instead of 1. Frankly, that's pathetic, you are just as likely to be ill with Parkinson's or MS after two years as you are after 1, but it's something. (Time Limiting contributory ESA)

-The most disabled children, who will never work will keep an entitlement to NI credits if the Lords amendments stand. This makes the difference between a degree of independence in adulthood or total dependency for the rest of their lives.

-Tax credits for disabled children would not be halved if the Lords amendments stand.

-Cancer patients would not have to look for work while suffering through chemotherapy and radiotherapy.

-Single parents would not be fined £100 to gain access to the Child Support Agency.

-Child benefit would be excluded from the Universal Credit benefit cap so that children are not penalised for the decisions of their parents.

Do you see how pathetically modest these changes are??? Can you believe we're even arguing about whether to send cancer patients to the jobcentre or not? Does that not tell you everything you need to know about this bill?

If even that doesn't convince you, then remember, the entire disabled community are united against this bill. Not just a few campaigners, but every national charity, every campaign group every church group, every poverty group, everyone who actually knows the details of it. They represent an electorate of millions and every MP going in to vote today will have received thousands of pleas not to overturn these amendments. The Government claim to be working with disabled people. They are not. They are meeting with disabled people, their groups and charities, and then ignoring them. Scope, Mind, Mencap, Macmillan, Sense, Papworth Trust, RNIB, The Disability Alliance, the Disability Benefits Consortium... the list goes on and on and on. No-one with any real knowledge supports this bill.

The crossbenchers in the Lords are not political. They heard the "evidence" presented by the government and they heard our evidence and overwhelmingly, on every issue that was overturned, they voted with us.

So what sickening arrogance is it that says "We don't care and we will do exactly what we like"? What kind of people believe that in a bill of over 175 pages there is no room for improvement at all? Most disgustingly, what kind of people look at the very modest changes above and believe that "We can't afford it" is a valid argument? Seriously? What kind of people? What kind of brains are so weak, so unimaginative, so mis-guided and dull that they cannot think of anywhere but cancer patients and profoundly disabled children to save a few pounds??? Should we not have looked everywhere else first? Should ministers not be refusing their bloody salaries before they take money from disabled children??

Yet today, the DWP expects Conservative and LibDem ministers to saunter into the house of commons, without having heard any of these arguments and vote as they are told to. To vote with a few misguided DWP ministers against the will of the entire sick and disabled community. Against sense, against reason, against safety. The painstaking work of 18 months of reasoned argument all undone in an afternoon - if they're lucky they might even get away for a quick 9 holes before supper!!!

It disgusts me.

This is not democracy, this is utter cowardice. This is not sane it is utter madness. This is not safe.

And so, as you might expect, I implore MPs to vote with their consciences. Not to follow the party whip but to think of loved ones who have suffered terrible illness and ask themselves if that loved one could certainly have returned to work within a year? To ask themselves whether or not they could look for work if they had a child so profoundly disabled that they needed 24 hour care? Do not inflict on us what you would not accept for yourselves or your families, please.

I promise you, now, today, that this bill will be an utter disaster. It is like watching a slow car crash. By the next election, hundreds of thousands of the most vulnerable people are going to be affected by it and the headlines will be unremitting. At the very least, those of you who vote to keep the Lord's amendments today will have gone some very small way to making it less of a disaster.

And those that don't? Well shame on you.

Disability News Round Up By John Pring - Week Beginning 30/01/2012

  • A senior government adviser has failed to declare freelance work carried out for the insurance giant set to make huge financial gains through the coalition’s incapacity benefit reforms.
  • The government has admitted failing to carry out any statistical analysis of the results of its controversial disability living allowance consultation.
  • The world’s biggest disability and deaf arts festival has won a prestigious annual award, a £10,000 prize, and a huge vote of confidence from regional business leaders.
  • The government has welcomed new figures which show a slight rise in the number of disabled people granted funds to make their workplaces more accessible.
  • A disability charity has begun legal action against a budget airline over its failure to make its website accessible to blind and partially-sighted customers.
  • New figures show the number of disabled people found eligible for unconditional support under the much-criticised “fitness for work” regime has doubled since its introduction by the Labour government in 2008.
  • A leading user-led arts organisation has raised new concerns over the search for volunteers to take part in the opening and closing ceremonies of the London 2012 Paralympics.
  • Disabled activists are warning that local authorities could try to copy a council that has withdrawn funding from a direct payments support service.
  • The broadcasting watchdog Ofcom has come under attack again after ruling that an offensive, disablist routine by comedian Ricky Gervais did not breach its code.
  • Nearly two-thirds of local authorities in England have reduced their spending on support in the community for disabled and older people, according to a survey commissioned by a committee of MPs.
  • It is “entirely obvious” that the government’s welfare cuts are “falling entirely” on disabled people and families with children, according to a leading academic.

For links to the full stories, please visit Disability News Service
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