Small Town Medicine, #NHS Style

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. 




Comment: Remploy, disabled workers and political correctness

"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

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

  • 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

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

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.

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

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