Protect head injury survivors
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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.