Radio 5 Live Discussion, Disability & Consumer Issues with Martin 'Money Saving Expert' Lewis, Peter White & Kaliya Franklin

3/29/2012 05:07:00 pm BenefitScroungingScum 1 Comments



With thanks to @latentexistence for providing the listen again segment

1 comments:

The Orwell Prize 2012 - Longlist

3/28/2012 05:49:00 pm BenefitScroungingScum 5 Comments




 I've been longlisted for the Orwell Prize (blogging) 2012. I'm sure there's some unwritten protocol to be all super cool about not being excited about it but as I'm not very cool I didn't get that memo and have been squee'ing with excitement all afternoon. In between swigging from the Oramorph bottle which might've contributed a fair bit in its own right to the squeeing now I think about it. Behaviour which, I hope, Orwell would've been proud of!

 

Blogs entered:


What's in a word? 

Welfare bill ignores reality of disability

Sitting targets for the government's welfare reforms 

 Robin on the road - life can change in an instant

The Broken of Britain - Six months on the road to justice

Govt's welfare reform bill trick stinks of injustice

Imagine you're four... 

Its no wonder politicians are ignorant about the trials facing the disabled traveller

Disability benefit reform: is the government hiding behind Atos errors?

Get out of your comfort zone, disability living allowance cuts are relevant to all

 


 

 

 

 


 

 



5 comments:

Disability News Round Up By John Pring - Week Ending 14/03/2012

3/20/2012 12:08:00 pm BenefitScroungingScum 3 Comments


·         Disabled activists have reacted with astonishment after the government claimed in a new action plan that its sweeping welfare reforms and cuts to disability benefits would help in the fight against disability hate crime.
·         Fresh concerns have been raised about the government’s work capability tests after new figures showed a huge increase in the number of disabled claimants of incapacity benefit being reassessed as “fit for work”.
·         Concerns have been raised about the Metropolitan police’s reluctance to seek advice from its disabled advisers, following a high court case which led to a teenager with autism winning nearly £30,000 in damages.
·         London’s mayor could be breaching his Equality Act duties by refusing to trial an accessible version of his cycle hire scheme, it has been claimed.
·         A user-led advice service that has lost its council funding fears similar cuts could have serious financial consequences for disabled people in other parts of the country.
·         The government has refused to say whether it will withdraw funding for sheltered businesses across the country, following last week’s decision to force the closure of at least two-thirds of the remaining 54 Remploy factories.
·         A disabled MP has backed the government’s decision to withdraw funding from the remaining sheltered factories run by Remploy.
·         Disabled activists have again been forced to warn of the “catastrophic” consequences of a weakening in the laws on euthanasia and assisted suicide, after the latest “right to die” high court ruling.
·         A disabled peer has spearheaded the latest defeat of the government over its plans to reform the legal aid system and cut £350 million from its budget.

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

3 comments:

Tonight's The Night! Wheelchair For Kali Gig, Panache, Hoylake

3/17/2012 10:21:00 am BenefitScroungingScum 2 Comments

It's the big gig tonight! I'm very excited. In part because I can't remember the last time I had a night out. Well...a night out that I didn't fall asleep into my dinner over by 8pm! My lovely neighbour Caroline England is providing the entertainment and is always worth making the time to go and listen to. If that's not enough we have raffle prizes and some extra special auction prizes.

 

For all you Coronation Street fans out there the first prize in the auction is a tour of the Coronation Street set, pretty much the last chance to see the cobbles before Corrie moves to it's new location in Salford. Your tour guide will be the wonderful Julie Hesmondhalgh who plays Hayley Cropper and should give you lots of chances to bump into cast members. Thanks SO much to Julie for kindly donating this prize for the auction!



Our second prize is a fabulous family (or individual) portrait session with Colin McPherson, one of the North Wests most acclaimed photographers and a wonderful neighbour.

To place your bids text CORRIE 07831 838717 (minimum bid £100) or PHOTO to 07831 838717 (minimum bid £50)

Please note the prizes do not include travel to and from the Coronation St set, and the photo prize is only valid in the CH or L postcodes.

2 comments:

Ashley X - 'A Pillow Angel' Speaks Out, Surgeon Dies, Yet Treatment Is On The Rise

3/16/2012 09:19:00 am BenefitScroungingScum 6 Comments

Five years ago a controversial procedure was carried out on a 9 year old American girl with severe cerebral palsy known as Ashley X. Her growth was permanently retarded, surgery performed to remove her breast buds and give her a hyserectomy keeping her in a lifelong 'Peter Pan' situation.

The Guardian has discovered that at least 12 other families are now undergoing such treatment to permanently infantalise their children. These are families who are undoubtedly doing what they perceive as being in the best interests of their children, but is that really the case? And more importantly the question we should all be asking is why families are pushed into the position that they even need to consider such radical options to prepare for the continuing care of their adult children?

I wrote the piece reproduced below in 2007, but have now discovered (H/T @NellBridges ) this first person account of Anne McDonald, herself a 'pillow angel' who's growth was retarded by neglect rather than surgery or hormones. Anne's full article is an essential yet chilling read for all of us, but particularly those charged with the care of the supposedly profoundly brain damaged. She says;

"Like Ashley, I have experienced growth attenuation. I may be the only person on Earth who can say, "Been there. Done that. Didn't like it. Preferred to grow."

Unlike Ashley, my growth was "attenuated" not by medical intervention but by medical neglect. My growth stopped because I was starved. St. Nicholas offered little food and little time to eat it -- each staff member had 10 children with severe disabilities to feed in an hour. That was the roster set by the state and accepted by the medical profession. Consequently my growth stopped shortly after admission. When I turned 18, I weighed only 35 pounds. I hadn't developed breasts or menstruated. I was 42 inches tall.

My life changed when I was offered a means of communication. At the age of 16, I was taught to spell by pointing to letters on an alphabet board. Two years later, I used spelling to instruct the lawyers who fought the habeas corpus action that enabled me to leave the institution in which I'd lived for 14 years.
In the ultimate Catch-22, the hospital doctors told the Supreme Court that my small stature was evidence of my profound mental retardation. I've learned the hard way that not everything doctors say should be taken at face value."
Read more: http://www.seattlepi.com/local/opinion/article/The-other-story-from-a-Pillow-Angel-1240555.php#ixzz1pGlovDOH

Never Neverland (originally posted October 11th 2007)

 On Tuesday I asked people for their feelings about the ethical debate surrounding Alison Thorpe's wishes for her 15 year old daughter Katie to have a hysterectomy. Another mother has followed suit and is asking for doctors at Alder Hey Hospital in Liverpool to perform a hysterectomy on her 9 year old daughter Olivia. I was very specific when I asked people how they felt about this, and now it's time to think.

This issue first came to worldwide attention early this year with the case of Ashley X, the 9 year old American girl with static encephalopathy who underwent radical and non-essential surgery in 2004 at the wishes of her parents. A hysterectomy was performed upon her, her breast buds were removed and she was given hormone injections to stunt her growth.

Since then the Washington Protection and Advocacy System (WPAS) has ruled that Ashley's rights were violated by Seattle Children's Hospital who performed the surgery without a court order. The executive director of WPAS said that "Washington law specifically prohibits the sterilisation of minors with developmental disabilities without zealous advocacy on their behalf and court approval", but despite this the group have no plans to sue. In May 2007, Seattle Children's Hospital admitted they did break state law by allowing the surgery to proceed without first having a court review the proposed treatment. The hospital blames the error on "internal miscommunication"


On September 30th 2007 Dr Daniel Gunther the paediatric endocrinologist at Children's Hospital and Regional Medical Center in Seattle and associate professor of paediatrics at the University of Washington who along with his colleague Dr. Douglas S. Diekema performed the illegal surgery on Ashley X was found dead in his car. His cause of death listed as toxic asphyxia from inhaling car exhaust. Ashley's family thanked Dr Gunther on their blog back in March 2007, commending him for his "courage" and "unwavering support" They went on to say "It is our, and Ashley’s luck, that we knocked on the right door". I wonder, in the light of subsequent events, do Dr Gunther's family feel that way?

At the time the Ashley X debate was raging earlier in the year, one of the differences highlighted between the UK and the USA was that such a situation could never occur without legal approval, which is precisely what the doctors at St John's Hospital in Chelmsford consulted by Alison Thorpe are seeking. This is one of the few positives I can find in this situation as we definitely don't need another death arising from this sorry mess.

So what exactly does this mess consist of, and how have we got here? Alison Thorpe, and now Kim Walker are both asking doctors to perform hysterectomies on their respective daughters, Katie and Olivia, both mothers claiming that they want to save their daughters from the "distress" and "pain" of menstruation. Both of the mothers have ruled out other options such as the contraceptive implant, or the contraceptive pill or injection both citing concerns about thrombosis due to the girls lack of mobility, although other options which are just as effective as sterilisation, but reversible have recently been recommended by specialist doctors such as Paul Hardiman at the Royal Free and University College London for a patient in similar circumstances. Both mothers insist that only they are able to make this decision for their daughters, stating concerns about their daughters lack of dignity, inability to understand menstruation, to keep it private or discreet, Kim Walker going so far as to say;
"I can't see why they should have an opinion on it unless they are going through the same thing themselves."

Well I think that's where Mrs Walker is wrong. I think its absolutely vital each and every one of us does have an opinion on this, and everything else about disability. We're buried under a pile of politically correct nonsense which frightens everyone into silence and enables a level of discrimination and abuse to go on against a vast sector of society which if it were racist, sexist or homophobic would provoke outrage, but because its disablist no-one even notices.

Those in favour of the radical and medically unnecessary surgeries proposed for Katie and Olivia suggest that as these girls will never be able go on to have children that to take away their wombs won't matter. That is of course true for these two girls, their disability is too profound for them to experience motherhood, but there is all too often a wanton disregard for the fertility of women with disabilities, particularly in the medical profession who often make dangerous wrong assumptions about how little a disabled person's life must be worth. From their perspective. Obviously. As Simone Aspis of the United Kingdom Disabled People's Council herself said
“We know of plenty of disabled people both with physical impairments and learning difficulties who give birth to their children and are great parents. This is nothing more than eugenics and abuse of Katie’s human rights.”

The argument keeps cropping up by both these mothers and doctors trying to justify the removal of these girl's wombs that as they will not be able to understand menstruation or keep it private that it will be deeply distressing for them. Why? Is this not more to do with the distress or embarrassment the rest of us might feel rather than Katie or Olivia or any other disabled young woman likely to be subjected to this kind of abuse if we the UK follow down the path of an American surgery already deemed to have been illegal and, who knows, possibly responsible for one death. Both Katie and Olivia are already doubly incontinent and unable to manage their own bodily functions, why should menstruation be any different for them? To deny these girls the right to progress in the same way as their peers do, and to experience an event which will take them into womanhood rather than keeping them in an artificially created Neverland seems to me rather more for the convenience of society and as such obscene. Alison Thorpe talks about the activities which used to bring Katie joy, which apparently she is now becoming too big for, such as horse riding as a justification for this procedure, but at no point does anyone seem to have the courage to mention sexual pleasure. Neither of these girls will be able to experience the joys of a first date, and they are not capable of giving their consent to sex in any form, but that does not mean that they should be robbed of their ability to feel sexual pleasure, after all just because the idea of profoundly disabled people enjoying sexual pleasure is distasteful to some does not mean it is not as much their right as everyone else's. That it is not expressed in the 'typical' form does not mean it should be taken away.

That for me is the crux of this issue. The debate rages in the media, mainly focusing on the difficulties experienced by these two mothers in caring for their daughters. Quite right too. The government should be ashamed. Deeply ashamed. Carer's allowance is £48.65 a week. Social care is in meltdown. Good social workers a laughable urban myth. Equipment sold at vastly inflated prices to the most vulnerable in society. Neither of our main political parties are proposing anything realistic to change the lives of disabled people in a positive way that doesn't engender fear. Even more disgraceful as both the leaders are fathers of disabled children, and while they fight on about how best to slash the costs of the welfare bill attacking the most vulnerable and hoping to ignore the 'can work, won't work' sector of society, people like Alison Thorpe and Kim Walker look to hysterectomies as an answer to their problems, because at the end of the day, really it is their problem. Both these girls could be given alternative forms of treatment, but even I, so staunchly opposed to the choices they've made for their daughters understand why they've made it. Who doesn't? Once these girls move into the care of adult social services it will become even more difficult to extract care packages and equipment from their respective local authorities. Bigger and heavier means more difficult to lift, more difficult to care for, and brutally, disabled adults aren't all cute and deserving of sympathy from the public in the way that disabled kiddies are.

I understand the dilemma these two women face, I really do, I just think that performing this surgery will be the back door back in to the eugenics policies that were once accepted for disabled people, and what the media and wider public seem to have misunderstood is not just that disabled people are of equal value and equal citizens to everyone else, but that people with disabilities have something fantastically important to teach society. Start to mess with that and the lesson disappears, and it's not one we can afford to lose. For people with disabilities as profound as Katie and Olivia radiate love and joy of the purest kind around them, and that's something we're sorely lacking in this day and age. It's also priceless.
So, lets not forget, however much sympathy we feel for both these mothers, however much we might feel that anything that makes their lives easier can only be a good thing, already one child is forever a child, the parts of her body that would make her a woman forever removed without her consent in a surgery only judged illegal once it was too late, by an agency supposed to protect her but not be taking legal action against the hospital and a man is dead. A doctor who, whatever he did, whatever we think of it must've thought he was doing his very best for his patient, and who may have found the actual consequences just too much to bear. Peter Pan and Neverland it ain't.

6 comments:

Disability News Round Up By John Pring - Week Ending 11/03/2012

3/15/2012 10:37:00 am BenefitScroungingScum 2 Comments


  • Disabled people’s organisations have backed government plans to withdraw funding from the remaining sheltered, segregated factories run by Remploy, but have called for as many of them as possible to emerge as new user-led social enterprises.
  • The government has announced that 36 of the remaining Remploy sheltered factories are to close by the end of 2012, with the loss of hundreds of disabled people’s jobs.
  • The government has promised to increase funding and support for the Access to Work programme, which it says will help thousands more disabled people into mainstream jobs.
  • The Office for Disability Issues has angered disabled activists after stating that its own disability advisers do not have to notify civil servants if they work for the company set to make millions from incapacity benefit reform.
  • The government has been heavily defeated in the House of Lords over plans to remove legal aid for benefits appeals.
  • Britain’s best-known Paralympian has suggested that more should be done to “educate” the country’s elite disabled athletes about some of the real-life challenges facing other disabled people.
  • The London 2012 Olympics and Paralympics are a “massive opportunity” to improve permanently the accessibility of the capital, according to Britain’s greatest Paralympian.
  • Disabled people have explained why they travelled from across England to take part in a mass lobby of parliament calling for fundamental reform of the social care system.
  • Local authorities, health bodies and police forces are frequently breaching the human rights of disabled people, according to a new report by the equality watchdog.
  • The body that runs the House of Commons has pledged to improve access for disabled visitors to parliament.
  • A project that adapts traditional English folk dances for wheelchair-users has been recognised by organisers of the London 2012 Olympic and Paralympic Games.

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

2 comments:

Campaign For A Fair Society Launch

3/14/2012 09:35:00 am BenefitScroungingScum 5 Comments

On Monday I went to London for the launch of the Campaign For A Fair Society. It was quite the event, held in a room with a terrace opening out onto the river, cucumber sandwiches and cream teas. I had managed to make myself look presentable, also being sure to wear a purple dress, the Spartacus colour. Somehow, miraculously my outfit had survived the journey intact, which is quite the acheivement considering previous trips to London have involved being hit on the head by an escaping nappy change tray and spending time shut in a 'cupboard' at Euston station after asking for assistance. I'd even been thoughtful enough to wear special 'prevent any embarrassing pant flashing moments' pants as when one is a tad wobbly, pant flashing happens quite often. Like on the train to London for example. Ahem.

Being the organised type I'd written my speech on the train on the way there, sat on the floor in a corner of the function room and had a little rehearsal and was clutching my scrappy, handwritten notes like a talisman. We queued up for tea served by men in pretty penguin suits and decided to mingle a bit and put faces to the names of people we knew from online.

We can be an excitable lot campaigners, so when I spotted a friend who I hadn't actually met in person before, hugs were very much on the cards. Who knew hugging could become an extreme sport? In the House of Lords no less! Well, when the hug is between a wobbly person balancing a cup of tea on their lap and a more mobile blind person extreme sport doesn't quite cover it! I didn't know until the next day that I had screamed so loudly it echoed around the room, but on the upside that does mean I don't have to explain to anyone why I looked like some sort of soggy, bare legged, bag lady by the time it came to give my speech!

I did manage to resist the impulse to rip off my tights in the actual function room. For which I feel points should mean prizes...a cup full of steaming tea doesn't mix well with underwear and inner thighs! Some time was spent in the disabled loo, splashing a bit of cold water around and finding a place to stash my soaking tights. Then a nice man in a penguin suit found a first aid box and a burn dressing so the mingling became slightly more intimate as Stefania and I found ourselves back in the disabled loo squeezing out burn gel to soothe my skin. Fortunately I'm a milky tea drinker and when initially handed my cup had asked for a little more milk which reduced the temperature from needing a trip to A&E levels.

The tea flinger shall remain nameless as she is utterly mortified. I'd like her to know that there's no permanent damage and no need to be upset as she is now in the very honoured position vying for 'hard man of welfare reform' alongside the wheelchair pusher, also nameless, who managed to rocket launch me from my wheelchair on a previous visit to London. If I ever write my memoirs infamy will be theirs!

So that was the House of Lords. Very beautiful, quite impressive and probably not used to screaming women in wheelchairs. Well...not inside anyway...

For those who'd like to hear the speeches, they are all available here. As I speak from notes there isn't a transcript of mine yet, but there is one available for Dr Simon Duffy's speech on the Centre for Welfare Reform website. Big thanks to everyone from Brandon Trust, but especially Stefania for enabling me to be at the launch event and looking after me so well while I was there.

Update 14:16: Photos from Brandon Trust 

5 comments:

Small Town Medicine, #NHS Style

3/10/2012 11:41:00 am BenefitScroungingScum 4 Comments

The sun's shining, in the distance I can hear waves and seabirds calling. A lovely Spring day. I can't seem to summon up the energy to get off my backside and do anything, so it seemed like the perfect time to share a small town story with you. 

Recently one of my old carers G came to visit. She's not old, just old in the sense that I used to be entitled to social care, then they rationed it a bit more and I wasn't. Friendships are generally discouraged between social care recipients and social care staff by both social services and care companies but people are people and find ways around that. I haven't been entitled to social care for almost 5 years, but our friendship has endured. Whilst she was here, in between insisting on returning the kitchen to some sort of hygenic state and generally helping out a bit on the sly she told me this lovely story about her husband T's GP. 

T has cerebral ataxia. It's one of those medical conditions filed under 'hope never to get that' and T is no longer the vibrant soldier he once was.  He can't get out of bed independently anymore and G cares for him supported by family. T didn't seem to have much contact with doctors over the years but they have a new, young GP now with some wonderfully old fashioned ideas of small town doctoring. 

G returned from a shopping trip to find a message on their answering machine from the young GP explaining that he'd like to come and visit that day. Having just got home, knowing T couldn't get out of bed to answer the phone or door she phoned the GP's practice before going upstairs to see T, intending to leave a message with the receptionist apologising for missing the GP. To her surprise the receptionist insisted on putting G through to the GP himself for a little chat. 

G started to apologise for the GP's wasted visit, so was quite surprised to hear him explain that he had had a lovely time chatting with T. Although T can't get out of bed, the idea of locking him into the house is unbearable for G, so the backdoor remains unlocked most of the time. The GP had turned up for a house call, realising this and so wandered around to the back of the house and let himself in. There he explained he had been greeted by the ferocious guard dog who had set about attempting to lick him to death. Then off they went upstairs for a home visit with T, before G returned home none the wiser. 

Of course, if you were one of the worried well patients shouting at the receptionists for the lack of immediate appointments you'd have no idea that your GP was off making house calls to an old soldier in the way that if you'd stopped to think you'd probably think was wonderful. Or at the very least a nice change from GP's 'skiving' on the golf course. But, a bit like the rest of the NHS, you wouldn't know that until it's too late and you're the one experiencing it. 




4 comments:

Comment: Remploy, disabled workers and political correctness

3/08/2012 05:34:00 pm BenefitScroungingScum 1 Comments

"What is or isn’t politically correct very much lies at the heart of the debate surrounding the closure of Remploy factories." My article on Remploy over at politics.co.uk

1 comments:

Disability News Round Up By John Pring - Week Ending 04/03/2012

3/07/2012 10:24:00 am BenefitScroungingScum 2 Comments

  • The government must act quickly to avoid destroying disabled people’s hard-earned right to independent living, according to the disabled peer who has played a key role in a year-long parliamentary inquiry.
  • Welfare reforms and cuts to disability benefits and services are putting disabled people’s right to independent living at risk, according to a new report by peers and MPs.
  • Two leading Scottish disabled people’s organisations have accused the minister for disabled people of lying about their involvement in a UK government consultation on welfare reform.
  • The government is pressing ahead with plans that could see disabled people lose their benefits if they drop out of a work experience scheme, despite backing down on imposing such sanctions on young people.
  • Disabled people campaigning against welfare reforms have linked up with activists fighting its health and social care bill.
  • The government appears to have backed away from introducing new laws that could have forced users of mobility scooters and powered wheelchair to take out insurance, undergo training and take proficiency tests.
  • The controversial welfare reform bill – which will see huge cuts to disability benefits, among other major changes – has cleared its final parliamentary obstacle and is now set to become law.
  • A high court ruling has delivered a blow to the self-advocacy movement, and the way in which user-led organisations are viewed by the legal system and local authorities.
  • Local authorities are preventing young disabled people from attending university, by refusing to offer them the care and support they need, MPs and peers have heard.
  • The organisers of London 2012 have unveiled the new Paralympic torch, as they marked the latest milestone in the count-down to the games.
  • Channel 4 has announced the disabled presenters and reporters who will be the faces of its coverage of the London 2012 Paralympics.

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

2 comments:

You don't know what you've got til its gone... #NHS

3/06/2012 03:21:00 pm BenefitScroungingScum 4 Comments

As regular readers will know, both Sue and I myself are prone to 'ooh, that'd be a good idea' moments which then, somehow, often before we've noticed, become a social media campaign. Personally I hold the medication responsible for at least a bit of the inspiration and often wonder why the creative industries don't employ more people on legal opiates to dream up campaigns. Ok, so the potential downsides are things like declaring one's desire to become a duck on twitter, but really that's a small price for any employer to pay.

So, with the #nhssavedmylife trending on twitter I thought it would be an interesting idea to try and live tweet through my bronchoscopy procedure. As many of my ideas do, this had practical downsides and I failed to actually tweet whilst the scope was being used, but it's the intention that counts.It was crap by the way. The bronchoscopy I mean. Definitely not one to put on your bucket list. Surprisingly the having a camera down your trachea bit isn't actually that awful, but the spraying of the local anaesthetic half way down to your lungs would be a worthy replacement for waterboarding, though I doubt Guantanamo would serve it up with a side order of nurses to hold your hands throughout. To be fair unlike torture centres the NHS do also offer a nice, free sedation service for those people not stupid enough to think toughing it out for a few minutes is the way to go. I'm generally a huge fan of floaty sedative drugs so it says a great deal that I chose to reject the free, legally administered by vein drug option. 

 We've had our problems over the years, me an' the NHS; lack of diagnosis, judgemental clinicians and absence of adequate services to support those with chronic conditions being top of a long list. As someone with a chronic condition falling through every possible gap in NHS provision its all too easy to get caught up in what the NHS doesn't do well and forget to notice all the things it does so brilliantly. NHS reform is undoubtedly needed, but like seemingly most of the legislation this Coalition government is trying to force upon us, there has been so little attention paid to the details that we risk dismantling all the positive parts of our systems whilst leaving the dysfunctional in place.

Yesterday, while waiting in the endoscopy suite I watched the NHS at its best. If I'd remained in the waiting room all I would have experienced was the constant, endlessly ringing phones and the tooth grinding while waiting for them to be answered. I'd have seen the officious reception staff too busy to meet anyone's eyes and the insensitive so and so eating in a waiting room full of people 'nil by mouth'.* I'd have been frustrated at the delays, the loss of my notes and did I mention those endlessly ringing phones already? They were very annoying.

But instead I went through the patient experience. The consent procedure which was repeated as my notes were yet to return from clinic 'just in case'. Even though I had a signed copy with me, it was just in case anything was missed. The repeated measuring of my blood pressure which indicated my fight or flight response was in full swing thank you very much, but despite the desire my ability to turn into a duck and fly far, far away was not.**

As I waited for and recovered from my procedure in the recovery area I saw the part of the NHS most people are never privileged enough to see. Typically an individual uses the health service heavily at the beginning and end of their life, with little contact in between save say the occasional broken bone, or visit to the GP for holiday immunisations. They can be frustrating, misleading experiences which involve lengthy waits or incomprehensible delays. Incomprehensible until you go beyond the surface areas of the NHS and get to see what's happening behind the scenes. There are areas of the NHS that would make you weep with the waste and incompetence, but conversely, an NHS unit which is well funded, staffed and managed is like watching a beautiful ballet performance.

Having experienced health care on both sides of the Atlantic, along with the subsequent bills fought over by hospital and insurance company I wondered how different would this experience be if my experience were in an insurance based co-pay environment. The fear I felt in the waiting room and reluctance to endure and unpleasant procedure would almost certainly have led to me running away and avoiding the test altogether if I had had to contribute towards the financial costs. I would definitely have gone without sedation as having it means losing income not being able to work the following day and adds substantially to the costs. I would almost certainly have refused the 'just in case' venflon put into my arm as an unjustifiable expense, more willing to take the risk of delay during an emergency than spend a few hundred pounds on something that might not need to be used, but that could save my life if it were. Perhaps I would also have felt obligated to go to the cheapest provider of the testing, regardless of whether they were equipped to deal with the kind of complications which can occur in someone with Ehlers Danlos Syndrome. I would certainly have felt a type of stress and fear that most British people raised on the incredible priviledge of the NHS cannot even begin to comprehend.

And that's the utter disaster that is the NHS bill. Its so poorly drafted, so ill defined that it doesn't address the areas of the NHS in need of reform - how we care for those with chronic conditions or the elderly. Instead it attacks the structure, forcing reluctant GP's to become both diagnostician and budget holder seeking the cheapest possible provider not the best. It fails to recognise the complex interactions required in any hospital, focusing entirely on the waiting room experience for the worried well.

It paves paradise and puts up a parking lot.

 

*Though the insensitive so and so did come with me and is probably not a permanent feature. 
** bloody drugs, promise you everything, deliver nothing. Like politicians but without the taxpayer funded duck house.

4 comments:

A Day In the Life Of An #NHS patient - Bronchoscopy Day Live Tweets, #nhssavedmylife

3/05/2012 10:13:00 am BenefitScroungingScum 0 Comments

0 comments: