NICE finally listened and updated the guidance to include proper warnings about pituitary damage for head injury survivors. My own struggle was ignored for far too long but this change ensures others will not suffer in the dark like I did. We have won a vital protection for future patients …
November 19, 2013
Final supporters
NO DONATION REQUIRED
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.
Updates
Reached 250 supporters
September 9, 2013
September 9, 2013
My own recovery remains a daily battle because I was never told my pituitary gland was at risk. We are nearing two hundred and fifty signatures and I need you to push this link to your own circles now so we can force NICE to listen.
September 4, 2013
Seeing these hundred names attached to the petition feels overwhelming because I know how many lives are being silently wrecked by these missed hormone tests. Thank you for recognizing that this simple lack of information is destroying families and leading to preventable tragedies.
Reached 100 supporters
September 4, 2013
September 3, 2013
We are approaching one hundred signatures and the momentum is building. Please post this link to your social media accounts right now because the people at NICE need to see these names piling up before they finalize their guidelines.
12 Comments
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.
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.
Going through hell at the moment cant find any one to do the gold standard dynamic testing. I think if NICE took this problem seriously they would save the nhs millions with undiagnosed illnesses
I too have experienced dreadful treatment over the past 5 years, only to find that I have Diabetes Insipidus (allegedly) caused by a head injury. I now take tablets everyday but I had to kick in private health insurance and alot of my own finance to diagnose this condition. I'm still far from 100% though and do not feel that I've been fully tested for all elements of PTHP.
I have come across many cases where damage to the pituitary gland has not been picked up by the treating hospital. It is very important that patients are screened for this as this could have a positive effect on future brain injury treatment and rehabiltation.
I have been in a similar situation
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.
Share this petition
Share this petition to help it reach more people.
Your share link
NICE finally listened and updated the guidance to include proper warnings about pituitary damage for head injury survivors. My own struggle was ignored for far too long but this change ensures others will not suffer in the dark like I did. We have won a vital protection for future patients …
November 19, 2013
Final supporters
NO DONATION REQUIRED
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.
Updates
Reached 250 supporters
September 9, 2013
September 9, 2013
My own recovery remains a daily battle because I was never told my pituitary gland was at risk. We are nearing two hundred and fifty signatures and I need you to push this link to your own circles now so we can force NICE to listen.
September 4, 2013
Seeing these hundred names attached to the petition feels overwhelming because I know how many lives are being silently wrecked by these missed hormone tests. Thank you for recognizing that this simple lack of information is destroying families and leading to preventable tragedies.
Reached 100 supporters
September 4, 2013
September 3, 2013
We are approaching one hundred signatures and the momentum is building. Please post this link to your social media accounts right now because the people at NICE need to see these names piling up before they finalize their guidelines.
12 Comments
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.
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.
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.
Going through hell at the moment cant find any one to do the gold standard dynamic testing. I think if NICE took this problem seriously they would save the nhs millions with undiagnosed illnesses
I too have experienced dreadful treatment over the past 5 years, only to find that I have Diabetes Insipidus (allegedly) caused by a head injury. I now take tablets everyday but I had to kick in private health insurance and alot of my own finance to diagnose this condition. I'm still far from 100% though and do not feel that I've been fully tested for all elements of PTHP.
I have come across many cases where damage to the pituitary gland has not been picked up by the treating hospital. It is very important that patients are screened for this as this could have a positive effect on future brain injury treatment and rehabiltation.
I have been in a similar situation
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.
Share this petition
Share this petition to help it reach more people.
Your share link
Petitions like this
Other petitions you might want to support
Scan to share
Anyone who scans this can sign the petition.
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.