Head injury a hidden killer, warns mother
Published on Sunday 28 October 2012
By Natalie Walker, The Scotsman
A MOTHER whose son committed suicide is leading a campaign to have doctors in Scotland recognise a form of depression suffered by up to a third of people who experience a head injury.
Joanna Lane, a former teacher, is calling for the illness – post-traumatic hypopituitarism (PTHP) – to be included when the NHS in Scotland publishes its new clinical practice guidelines early next year.
Supporters of the campaign want to see PTHP officially recognised to ensure doctors are made aware of the condition, which has been linked to depression, chronic fatigue and infertility.
Lane believes her son Chris developed the condition and that it led to him taking his life at the age of 31, after suffering depression. Her campaign has won the support of Alastair Campbell, the former Labour spin doctor, as well as politicians and doctors.
She is also backed by her brother-in-law, the scientist Sir David Lane, who is best known for his pioneering work at Dundee University on the cancer suppressor gene known as the "guardian of the genome".
Lane said: "There is substantial research showing this illness exists and how seriously it can affect people, that is why it is baffling that it is not even acknowledged by the NHS. The only way to describe it is intentional neglect. It is like it continues to be airbrushed out of official medical guidelines. It is scandalous, and it is flouting the patient's right."
Lane has written to the Scottish Government asking for PTHP to be included in the revised NHS guidelines being put together by the Scottish Intercollegiate Guidelines Network (SIGN), which produces clinical practice guidelines that are widely used in UK hospitals. An updated version of the guidelines for Scotland is due to be published in March.
The illness, caused by damage to the pituitary gland, has never been officially recognised in the UK but is commonly diagnosed in a number of countries, including the US, Germany and Italy.
Lane's son fractured his skull when he fell out of a tree when he was seven. He later developed depression and discovered he was impotent. Both health issues have been attributed to his having PTHP although it was never officially diagnosed.
Lane, who lives in Surrey, said: "What is so frustrating is that PTHP is fairly easy to diagnose and treat. There will be many hundreds of people with undiagnosed PTHP in Scotland who should have a chance, at least, to be told what is wrong with them and get the treatment that would change many of their lives."
Labour's health spokeswoman Jackie Baillie has tabled a parliamentary question asking the Scottish Government to include reference to PTHP in the SIGN guidance. Campaigners believe NHS officials are reluctant to recognise the illness because of the high cost of lifelong hormone replacement treatments, which many patients could need.
The pea-sized pituitary gland is attached to the brain by a slender stalk. Known as the "master gland", it controls the thyroid and the adrenal glands and is responsible for metabolism, stress and growth hormones and the sex hormones testosterone and oestrogen.
Almost a million people suffer head injuries every year in the UK, with 10 per cent classed as serious, figures show.
The Pituitary Foundation charity estimates that up to 30 per cent of people with serious head injuries suffer some pituitary damage. The foundation warns that hundreds of thousands of people may be living with the effects of PTHP from a bang to the head, or whiplash.
Campbell, who has had depression and who is an ambassador for the Time to Change campaign aimed at changing attitudes to mental illness, has described the omission of the illness from guidelines as "bizarre".
He told Scotland on Sunday: "I hope Alex Salmond's team takes another look at this. I find it bizarre that PTHP has not been officially recognised as a condition which could be suffered by anyone who has a head injury. At the very least, anyone who could suffer from this should be tested to ensure they are given the appropriate care."
Tony Belli, a trauma neurosurgeon at Birmingham's Queen Elizabeth Hospital, said he believes Chris Lane suffered from PTHP after his fall.
He said: "Too many people are falling under the radar. I would like to see head injury patients who aren't feeling 100 per cent to be screened three months after the trauma.
"The costs to society are vast for those with PTHP: they often stop going to work and their relationships break down – divorce among all head injury cases is 60 per cent."
A Scottish Government spokesman said: "SIGN recognises that post-traumatic hypopituitarism is important, and a proposal to develop a separate guideline on this topic is currently being assessed by Healthcare Improvement Scotland."
The Football Association has recently revealed plans to change its screening policy on head injuries and is considering including pituitary damage.
In a 2005 study published in Brain Injury, the journal of the International Brain Injury Association, 11 specialists recommended screening for PTHP after suffering moderate-to-severe brain injury. Blood and urine tests are taken to determine pituitary gland damage by measuring hormone levels, and then an assessment made of the patient, with questions about depression and sexual dysfunction.
The brain injury charity Headway recently applied to the health watchdog NICE, which covers England and Wales, to recognise the condition but no decision has been made.