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Protect head injury survivors

466 Signatures Goal: 10,000

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NICE (the National Institute for Health and Clinical Excellence) are circulating a draft guideline update, for comments from their stakeholders. The updated guideline is due out on22 January 2014. Time is short for insisting they give head injury patients information that can make the difference between life or death. If you’ve had a head injury, you're up to four times more likely to kill yourself. You may also find you’re infertile, have no sex drive, and suffer chronic fatigue. You may even become obese. Why? A damaged pituitary may be the cause. This tiny, fragile gland is damaged in a third of serious injuries, and concussion or whiplash can harm it too. UK soldiers are routinely screened for post-traumatic hypopituitarism (PTHP) and get hormone treatment that can give them their lives back. Yet civilian head injury patients aren't even warned! They’re sent home from hospital with a letter that says "Long term problems: . . .some patients only develop problems after a few weeks or months. If you start to feel that things are not quite right (for example, memory problems, not feeling yourself), then please contact your doctor . ." (http://www.nice.org.uk/nicemedia/live/13499/64912/64912.pdf p.295) ‘Not quite right’! Nobody could call this an adequate warning for a devastating condition that may happen years later causing possible job loss, marriage breakdown or suicide, long after the patient will make any connection with a past head injury. In June 2009 a NICE spokesman wrote "I am not denying the seriousness of this condition, nor the scope for a disastrous outcome if not recognized". http://www.headinjuryhypo.org.uk/html/nice_appendices.htmlappendix 2 This letter even promised to ‘address the problem’ in the revised guideline. However, inexplicably, NICE are not doing this. A recent BBC health programme put the number of undiagnosed PTHP sufferers at between half a million and a million. (BBC Radio 'Inside Health' April 9th 2013). NICE is directly responsible for the misery these undiagnosed patients are suffering. There is strong evidence to suggest they’re being told they have chronic fatigue syndrome and getting no treatment but counselling and exercise therapy. A million is a lot of people to put on the scrap-heap. Please let's have no more. Let's put an end to this disgrace.

PETITION TO NICE

We ask you to bear in mind the high prevalence of post-traumatic hypopituitarism, currently estimated to be between 500,000 and a million*, and to fulfil your obligation to protect the patient and to uphold the patient's human right to be fully informed about the risks of his condition. Specifically we ask you to amend the 'Long Term Problems' paragraph in Appendices 0.6.1, 0.6.2 and 0.6.3 to include the words:

Some patients may find, even several years after their injury, that they develop problems having sex with their partner, or that they and their partner are unable to conceive a baby. They may also develop weight problems, depression or suffer from chronic fatigue. If any of these things happens, do not worry, but ask your GP to refer you to an endocrinologist who will arrange effective treatment.

Links

www.headinjuryhypo.org.uk

www.ukabif.org.uk

www.pituitary.org.uk

www.childbraininjurytrust.org.uk

 

 

  • Allan Reford
    Jan 19, 2015
    Jan 19, 2015
    Lets get this cause of hypogonadism brought to everyones attendtion, as a sufferer of secondary Hypogonadism a condition which most GP`s either dont know about or consider when diagnosing, lets put awareness over our social media sites and raise awareness, lets help those who are sugffering undiagnosed.
  • Allan Reford
    Allan Reford United Kingdom, Falkirk
    Jan 19, 2015
    Jan 19, 2015
    Lets get this cause of hypogonadism brought to everyones attendtion, as a sufferer of secondary Hypogonadism a condition which most GP`s either dont know about or consider when diagnosing, lets put awareness over our social media sites and raise awareness, lets help those who are sugffering undiagnosed.
  • Hugh Easton
    Hugh Easton United Kingdom, London
    Sep 03, 2014
    Sep 03, 2014
    As someone suffering from secondary hypogonadism, I know from first hand experience that males with hormonal disorders are by and large completely ignored by the NHS. With hypogonadism, they seem to have an unofficial policy of refusing to diagnose or treat the condition, which if left untreated completely destroys your quality of life, and puts you at high risk of developing osteoporosis and other debilitating conditions as you get older too.
  • Gary Harper
    Gary Harper United Kingdom, Romford
    May 09, 2014
    May 09, 2014
    It is about time the looked at your basic hormones and levels instead of that will do as in the end will save money and lives as someone that has Fibromyalgia type problems and now trying a female pill estrogen/progesterone which is a more natural type(zoely) and finding it is really helping me as the effect is far more than expected with pains etc this is some thing that is too far ignored by the so called "professionals" along with thyroid.
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466

Signatures

  • 2 years ago
    Lorna pritchard United Kingdom
    2 years ago
  • 2 years ago
    Faisil Mustapha
    2 years ago
  • 2 years ago
    Allan Reford United Kingdom
    2 years ago
  • 3 years ago
    Rob Hansen
    3 years ago
  • 3 years ago
    Hugh Easton United Kingdom
    3 years ago
  • 3 years ago
    david reid
    3 years ago
  • 3 years ago
    Sally Argyle
    3 years ago
  • 3 years ago
    Gary Harper
    3 years ago
  • 3 years ago
    glyn
    3 years ago
  • 3 years ago
    peter green
    3 years ago
  • 3 years ago
    David Hasson
    3 years ago
  • 3 years ago
    Allan reford
    3 years ago
  • 3 years ago
    Christine Ward
    3 years ago
  • 3 years ago
    Andrew Kekwick
    3 years ago
  • 3 years ago
    Tara carpenter
    3 years ago
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