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Tragedy exposes mental health cover-up

A knock on the door one sunny afternoon in 2008 changed Joanna Lane’s
 life forever.



A knock on the door one sunny afternoon in 2008 changed Joanna Lane’s
 life forever. It was the police with shattering news.

Her son, 31-year-old Chris, had taken his own life. He was a “lovely boy” who loved tinkering on his piano, listening
to Dido and hanging out with mum.

He was considerate too – so much so that even in
his final despairing hours, he was thinking of others. He sent pre-scheduled emails to alert the police and le his door unlocked so they could find his body.

His death devastated his family, friends and Skipton Building Society colleagues. It was also the start of his mother’s fight to expose what she believes has been a decades-long mental health cover-up.

Eight years on, her endeavours have helped to bring the issue of hypopituitarism after brain injury to the fore, forcing healthcare decision- makers in various fields to rethink their approach to the condition.

Chris sustained a head injury when he fell out of a tree at age seven. He suffered skull fractures and spent a week in a coma. But undetected by doctors was the damage to his pituitary gland that would eventually cause devastating problems in later life.

“After his fall there was no screening for pituitary problems and we were never informed of the long-term risks. As we left hospital,
 a nurse did say in passing that his pituitary gland could be damaged, but when he grew up normally afterwards we stopped worrying.”

As Chris got older, signs that Joanna now 
knows can be attributed to post-traumatic hypopituitarism (PTHP), emerged.

It wasn’t until she put the jigsaw pieces of her son’s life together in the aftermath of his death, that his silent suffering with the condition became clear.

Hypopituitarism is the failure of the pituitary gland to adequately produce one or more hormones.
 While no conclusive figure exists, most studies suggest around a third of people after traumatic brain injury (TBI) have at least temporary dysfunction of the pituitary gland.

It is well known as a cause of dwarfism in children, but is perhaps lesser known as a cause of depression and impotence; both of which affected Chris.

Joanna says: “When we went through his things we found letters from his ex-girlfriend which clearly implied they hadn’t managed to have sex. I called her and found out they’d never managed it in the four years they were together. He’d never been able to get an erection but had refused to seek help.

“There were also bouts of depression. When he was doing his A-Levels and we were nagging him to revise he got mad and disappeared for three days. The stress got too much for him, which may have been a sign of a deficiency in the hormones which control stress.

“There were two similar occasions, including one when he suddenly left his job and drove up to Edinburgh with the intention of committing suicide.

“That was three years before he died. We made a swift appointment with a psychiatrist and he was only offered counselling. We weren’t told about the tripled risk of suicide after head injury.

“I don’t think he ever told anyone about 
his impotence and his condition was never investigated further. I guess this was a missed opportunity.

“Remembering his head injury as a child, my sister and I then found a wealth of research linking damage to the pituitary gland with impotence and depression.”

So began Joanna’s campaign to bring more attention to what appeared to be a worryingly underdiagnosed condition.

It started with a scatter-gun approach, targeting media, politicians, health authorities and charities. Results soon followed, including changes to various official patient websites that were previously devoid of information about PTHP.

“At the time, the research was there but there was nothing at all about it on clinical knowledge portals used by GPs or NHS staff,” says Joanna.

A lack of awareness and the infrequency of screening for PTHP means misdiagnosis levels are high.

“People don’t know what PTHP is and often 
they are told they’ve got ME or chronic fatigue syndrome and are left to flounder without any proper treatment other than counselling or therapy.

“Almost all of the many people that contacted me have had to fight through that type of diagnosis until they’ve been given the correct one. So their lives have been written off.”

Diagnosis of hypopituitarism has more than doubled since 2008, and there are screenings of head injured patients taking place within the NHS, but not routinely or universally.

Joanna believes there could be as many as a million undiagnosed hypopituitarism cases in the UK. She bases this estimate on two major studies.

The Schneider review evidenced an annual incidence of 30 hypopituitarism cases for every 100,000 people and another, by Fernandez Rodriguez et al, claimed this figure to be 50 per 100,000. These equate respectively to 18,000 and 30,000 cases in the UK each year.

Extrapolating an average out over what Joanna calls “four decades of neglect” gives a six-figure statistic.

“It’s a conspiracy to deny more than a million Britons a proper life. Hypopituitarism is life- wrecking and a head injury gives you a one in three chance of getting it.

“When people receive a letter from the hospital about head injury, why can’t there be a warning about PTHP?”

In fact, one Devonshire hospital has already changed its discharge letter to include PTHP, while various online NHS patient resources have also been updated.

Joanna even managed to get her message out to millions of TV viewers during Saturday night prime-time. 
Series 13 episode one of hospital drama Holby City featured a case of PTHP, thanks to a helpful tip from a screenwriter at a literature festival.

Other breakthroughs include the Army’s decision to start screening soldiers for hypopituitarism – possibly prompted by Joanna’s correspondence with them.
 The military showed unexpected humanity, she says, where other state-backed organisations ignored and suppressed her views.

She wrote to Lt Col John Etherington at Headley Court rehab centre and, over a year later, he responded.

He said the Army was aware of these potential complications and that her concerns would be passed on to the neuro-rehab team.

She later discovered that a military hospital in Surrey was screening all head injury patients routinely for PTHP.

“I then learned that this practice had been extended to the Queen Elizabeth Hospital in Birmingham, which is the first port of call for the wounded.

“This information meant I could ask why
 soldiers were screened while civilians weren’t even warned.”

A bigger challenge in Joanna’s fight for
change came when she took on the might of
 the National Institute for Health and Care Excellence (NICE).

She argued that PTHP should be included in NICE’s head injury guidelines. NICE said the guidelines covered acute stage only, and that hypopituitarism takes months to develop, so therefore had no place in 
the guidance.

Joanna was backed up by significant evidence
of hypopituitary problems in the immediate aftermath of TBI. As pituitary specialist Chris Thompson, professor of endocrinology at Beaumont Hospital, Dublin, wrote in an email to her in 2014: “It has been known since 1969 that 35% of patients surviving 12 hours after TBI have evidence of infarction of the pituitary. Infarction is cell death due to lack of blood supply.

“This was reinforced in 2007 by data which showed that there was no sign of infarction in 12 patients who died at the scene of TBI, but in 43% of patients who died within the first seven days, and who were studied at post-mortem.

“Our own data has shown that 30% of patients studied at 7-14 days post TBI have evidence of subnormal pituitary function and more recently, a more comprehensive daily assessment of 100 patients with TBI showed that 80% had subnormal cortisol levels at some state during hospital admission.”

Despite her efforts, and support from experts like Chris Thompson, Joanna hit a brick wall as her bid for legal aid to support the case was rejected.

The legal aid agency said in a letter: “From the information provided, hypopituitarism is not something which is diagnosable within the early stages of a head injury and as such I cannot see that it falls within the remit of this guidance.”

That was two years ago and NICE’s guidelines have not changed since.

The organisation was unable to tell us about
any plans to change them in the future, when contacted by NR Times.

In the meantime, Joanna hopes her new book Mother of a Suicide: Fighting for the Truth will raise awareness of PTHP and encourage healthcare authorities to do more to recognise and screen for the condition.

“I felt so angry to be treated like a little person that could be squashed by a big powerful organisation like NICE so I thought I’d write a book giving the evidence so that people could make up their own minds.

“The words just owed out when I was writing about Chris, but the other stuff about my fight
to change the system, was a lot harder, trawling through several years worth of emails 
and research.”

Given her relentless work over the last eight years in highlighting the hidden threat of hypopituitarism, she certainly had plenty of source material for her book.

If buoyant early sales are anything to go by, it may well have the desired effect and help more people in future avoid the tragedy that befell Chris Lane and his family.

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