New guidelines aimed at helping patients suffering brain injuries in Scotland are “flawed” and could mean a key medical problem goes undiagnosed, campaigners claim.
Joanna Lane – sister-in-law of eminent Dundee scientist Professor Sir David Lane – wants the condition post-traumatic hypo-pituitarism (PTHP) to appear in clinical guidance produced by the Scottish Intercollegiate Guidelines Network (Sign).
But the new guidance, published today, does not include a mention of PTHP. However Sign said it agreed that the condition did need more awareness.
Mrs Lane, 64, started her campaign after her son Chris took his own life several years after developing PTHP which was believed to be linked to a head injury he sustained after falling from a tree as a child.
Research has found that head injuries can lead to damage being caused to the pituitary gland, found at the base of the brain behind the bridge of the nose.
The condition can lead to major depression, chronic fatigue and impotence.
Mrs Lane said she believed that her son’s injury was the likely cause of his impotence and depression which triggered his suicide in 2008.
She said: “We were convinced there was a link with Chris’s long-ago head injury, so we did some surfing.
“The research has been around since the 1980s, yet most medics remain ignorant.
“The number of people affected is staggering. Between 18,000 and 30,000 individuals every year suffer from the condition.”
Mrs Lane said medics remained unaware of the condition as it was not included in medical guidelines, leading to her campaign to make sure it was outlined by Sign. The campaign received the backing of brain surgeons, celebrities and politicians.
Mrs Lane expressed disappointment that PTHP was not included in the latest guidelines on brain injury.
“Fifty consultants and charities sent a letter asking them to include two sentences on the risk,” she said.
“Those sentences could have made the difference between life and death for a young person who has had a head injury. But they refused.
“I can’t bear to think of all the years of life he has lost, the children he might have had, if only his GP and psychiatrist had known the truth, had access to information which I am striving to have included in the guidelines.”
Mrs Lane added: “I miss Chris so much and I can’t bring him back, but I want to save other young people from going through the same misery.”
A spokesman for Sign, part of Healthcare Improvement Scotland, said: “Sign agrees that post-traumatic hypopituitarism is a condition that would benefit from greater public and clinical recognition.
“However, a clinical guideline is a robust, internationally-recognised method of presenting the clinical community with the best evidence to diagnose and treat.”