Difficulties of persuading the medical establishment to change their practice
Keywords: head injury, intensive care, follow-up, discharge letter, loss of libido, infertility, depression, erectile dysfunction, impotence, amenorrhoea.
Our 31-year-old son committed suicide last August. We discovered after his death from letters and from his ex-girlfriend that he had been impotent, and had never managed to have full sex with her although they had been together for four years. She said he had never consulted a doctor about this.
We wondered if this could have been caused by a serious head injury he had when he was seven. My sister then discovered there was an enormous amount of research on the internet which established that yes, a head injury could cause this, and the effects might not show themselves until years afterwards. According to the research we read about 25% of moderate to severe head injury survivors had damage to their pituitary gland, which could result in loss of libido, infertility and depression. In girls it could cause amenorrhoea, erectile dysfunction in men. Growth hormone deficiency also occurred in most cases. Many many papers stressed how under-diagnosed the condition was, estimating that most cases are missed.
We do not know if our son did actually have pituitary damage. We only know that, besides his sexual difficulties, he found it hard to cope with stress and suffered from depression on four occasions. Head injury survivors are over three times more likely to commit suicide than other people.
In 1984, when he had his accident, the research hardly existed apart from isolated case studies. It gathered momentum from 2002 onwards. However we were very surprised how little awareness there is even now in the medical world. Much research recommends that all head injuries should be screened for pituitary damage (because mild head injury can cause it too, though less frequently) but as far as we could discover, only one hospital, in Manchester, does this. We also felt very concerned that the discharge letters hospitals send their patients home with give no warning, because if pituitary damage is something that may begin years later, the patient needs to know. We do not believe our son made any connection between his head injury and his depression and impotence. Letters he wrote imply that he thought everything was his fault. But if he’d realised, and if he’d known that his condition could be treated with hormone replacement, he would have been far more likely to seek help.
It’s now eight months since he died and we don't feel we've made any headway in changing things. NICE have not updated their 2007 guideline to the treatment of head injury, which does not mention hypopituitarism, or their sample discharge letter. As far as we know, no hospital has changed its practice as a result of all our letters, apart possibly from the hospital where our son had his childhood head injury. No letters have been sent to past head injury patients informing them that if they have depression or sexual problems they should ask for referral to an endocrinologist. The National Suicide Prevention Strategy which aims to reduce suicide by 2010 has ignored us, even though head injury affects a high risk group – young men under 35. We have written to the Secretary of State for Health, the National Patient Safety Agency, the British Medical Council, the head of Mental Health, the Health and Safety Executive, and individually to most of the neurosurgeons in the country, with no result at all.
Our son’s death has highlighted two questions. First, why is there this fatal time-lag between life-saving academic discoveries and their implementation in medical practice? And why, when a member of the public draws attention to a real danger to patients, is so little notice taken? I hate to think how many head injury survivors have failed to get the treatment they needed in these eight months, - or maybe even died, because a deficiency of ACTH can be life-threatening in the acute phase. Or how many past head injury patients like our son have been overwhelmed by the misery of their damaged existences.
There are 100,000 head injuries a year, so this is not a small problem. If anybody wishes to check the research please either google 'Hypopituitarism after traumatic brain injury' or visit our website http://www.headinjuryhypo.org.uk which gives links to it.
