"the true state of play" mission statement

MISSION STATEMENT

There is:
A person of great importance, without whom, no cure or improvements are possible!
A person of great knowledge about their complex spinal symptoms!
A person with incite into the dark effects of their spinal diseases & muscle damage!
A person without whom Surgeons, could not do their jobs!

YOU! Yes, YOU, not the other guy, the YOU, YOU!!

The YOU that wakes up night, screaming in Hellish agony, with mind bending pain!
The YOU that rolls around the floor, desperate to find ‘just one’ pain free position!
The YOU that can’t get out of bed and chairs without tearing, burning pains!
The YOU that used to strike an imposing figure, now distorted into a grotesque husk!
The YOU that is living in a world of a drug addled malaise!
The YOU that ‘dies inside a little’ when unable to care for your loved ones!
The YOU that feels the deep, crushing sense of failure for not providing for family!
The YOU with the feelings of hopelessness for burdening those you Love!
The YOU with hundreds of questions, but no answers!
The YOU on the floor, who a moment ago, was standing over there by the door!
The YOU that in your deepest despair, cry out, forlornly, for rest bite from this hell!

Yes, that YOU! The YOU that may be told, or may have already been told:

That the pain is in your head!
That you are thinking about the pain, in a wrong or negative manner!
That you will have to live with it!
That you must just take it easy!
That you who must undertake work that triggers crippling pains, it’s good for you!
That you that has ‘not quite amassed’ 15 DWP points, so you ‘must’ be able to work!
That you who will be financially better off, if you divorce and live in subsidized flat!
That you who is costing the UK economy a billion pounds a year, in lost productivity!
That there is nothing wrong with you!!!!
That medically, there is nothing that can be done!!!!!

Yes, that YOU, my fellow sufferers!!

The YOU with little or no choice, control or power over our diagnosis, treatments and after care! But, we do have a voice, we do now have a platform (thanks to Healthy Pages) and we do need to have the determination and courage to use the power of both, if we are ever to make changes and regain our hope!!

The aims of my upcoming posts, are to help us all ‘dare to challenge’ the inhuman status quo, to ‘rock’ the spinal gravy boat and ‘demand’ immediate improvements in diagnostics, treatments and after care for chronic spinal and severe back pain sufferers!!

We need to inform, educate, badger and harass our GP’s, Physiotherapists, Consultants, Chief Executives, Ombudsman, Politicians and where possible, the Media about the waste, inefficacy and outdated treatment plans and protocols at the core of the UK spinal services.

We Must, We are the only people who care enough, to ‘want and need’ to make that change!!!
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People of my generation (50, 60 70’s), are all used to giving our ‘implicit trust’ to our bank managers, insurance brokers and energy providers, sure in the knowledge, that they would do their ‘very best’ to protect our interests! But as we all ‘now’ know, over the recent decade or so, trusted people in positions such as these, have repeatedly ‘used and abused our precious trust’ to further their own interests, in detriment to our own!

But the reality is, my sufferers, that we ‘chronic spinal back pain patients’ must now be more aware, that a number of these spinal health professionals too, have joined the ranks of bankers and gas companies! It gives me no pleasure in saying this, but it must be said, and at the start of this campaign if we are to be honest with ourselves!

I have always had the greatest respect for all health professionals and the service they provide, and I have held ‘none more highly’ than local family GP’s and dedicated Specialist Consultant Surgeons, for the life saving dedication of their calling, and who have saved my life, on more than one occasion!!

I can remember GP’s walking 4 miles through 4ft snow drifts, driving through flood waters, and giving up their family life at Christmases, to come to the aid stricken relatives! I can remember GP’s being exhausted from 100 hours working weeks, turning up at patient’s homes, drunk and injured, and ‘still’ performing miracles of life saving Brilliance!!

The Specialists, particularly A&E, Heart, Brain, Cancer and Organ varieties were awesome!! They gave back people such good quality lives, even after life altering illnesses! Including me!

But now sadly, Spinal Services are not as great as they should be, not as great as we pay for and not as good as we deserve!!!

National Health Service Spinal Services have become a fragmented and rare resource! There are as many, if not more ‘private spinal operations’ carried out in the UK, than NHS procedures and there are more private spinal clinics than ever before, which goes some way to explaining why we have to wait ‘so long’ for NHS diagnostics and treatments and why we only get 10 minute consultation for our highly complex conditions.

I understand that ‘recent funding cuts’ have made a ‘big impact’ on all NHS services, but by treating spinal/back pain sufferers conditions in a ‘smarter, faster and less destructively’ they will more than make up for any ‘apparent’ up front price differences!

I believe, the service has gone bad, and is getting worse!!

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So, just like the fact that we now all use ‘comparison web sites’ to get the best deals for insurance, savings accounts, gas suppliers and phones, So, we must also now ‘all accept’ that we must use this same ‘powerful’ resource, to educate ourselves on the subjects of:
Our own symptoms,
Our own clinical condition,
Our own diagnosis options,
Our own treatment options, and
What ‘state of the art’ Diagnostics, Therapies, Treatments, Out of Area Funding and Aftercare Service are available to us sufferers.

Not just on the NHS, but private options too! All modern and experimental spinal procedures should be available to us ‘as of right’ FREE, and AT THE POINT AND TIME OF NEED!!

Remember Friends, no one else will care as much about YOUR illness, as YOU!!!

WE must take ‘ownership’ of OUR illness, to become more self aware and demand that the ‘people we employ’ to take care of us, to return us to mobility and keep us working or to simply to allow us to live with the best possible quality of life and dignity, Do their best and do no harm!!

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YOU know your body better than Doctors!
YOU know when things are not normal!
YOU know when you start becoming limited in mobility!
YOU will be able to locate the most painful spinal areas!
YOU will know your tolerance of pain!
YOU will be able to describe the pain sensations!
YOU know if the pain hurts more when you bend forward or backward!
YOU will be able to give Surgeons clinical information they simply cannot get anywhere else!

Please, don’t let anyone tell you different!!

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The life of the chronic back pain sufferer belongs to YOU and to ME and to ALL of US!!!

WE the SUFFERERS, have the ‘absolute right’ to ask difficult and detailed questions about our treatment choices, and the Medic’s have an ‘absolute duty’ to supply detailed and written answers! Consultants giving sufferers detailed information and opinions ‘verbally’ during consultations, but without detailed written information or evidence to back these words up, should no longer be accepted or allowed!!

And it is WE the SUFFERERS, that must be bold enough to demand these changes!

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Dear Friends, please believe me, I truly do understand how frightening and intimidating consultations, scans and tests can be, I have allowed myself to be bullied too, I’ve backed down when faced with overwhelming resistance, I’ve kept my mouth shut, as Senior Surgeons have ‘lied through their teeth’ and I have been guilty of ‘giving up’ and vegetating! Please believe me when I say, that I have had ‘ample cause’ over the last 8 years ‘to regret every moment’ of weakness, every easy option I have taken and every delay I have accepted with a whimper!!

The person I blame the most for my delayed treatments and low quality of life is ME!!! I blame no one more than MYSELF for additional years of pain, disability, heartache, depression, disappointment, frustration, failed treatments, wasted time, loss of precious family life, loss of earnings, and more and more and more!!!!!

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I fervently hope that you find my UPCOMING POSTS to be a catalyst for enlightenment, change and spinal care improvements!

I sincerely hope you will come to appreciate that my motivation is sincere, more than anything:

I DO NOT WANT YOU, TO BECOME ANOTHER ME!!

Best wishes and good spinal health to ALL!!

SPINELF