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.
The couples therapist who rehabilitates love after brain injury
Trained couple’s therapist and neuropsychologist Giles Yeates helps support couples and families and their connection and intimacy after a brain injury. He talks to NR Times about how couples can resume their sex lives after brain injury.
“It’s about reconnecting that sense of closeness and connection, I’m trying to rehabilitate love,” he says.
“After a brain injury, the focus is on the injury and regaining independence, rather than interdependence, but many families ask for this.
“When people talk about personality changes, saying the person is different and the connection feels damaged or wrong, couples therapy is way to help them find their way back to each other.”
But it isn’t the standard to offer couples therapy in the care pathway following a brain injury, Yeates says.
Many couple’s therapists who don’t work with neurological conditions don’t have the skills or understanding of the impact of a brain injury on a couple’s relationship and the heartbreak, he says. This is why Yeates focuses on a specific type of therapy that prioritises emotion.
“Emotionally focused couple’s therapy ticks the boxes straight away. It works on slowing people down. It’s about what happens in the sessions between couples.
“It’s neuro-friendly from the beginning, getting people out of their heads, to notice and communicate their emotional needs of each other that doesn’t engender further conflict, in a way that supports connection. It’s not a panacea, but it’s given as an option for couples to try,” he says.
Research, Yeates says, shows that the mental health of the brain injury survivor and their partner, and the strains on their relationship, all worsens from two to five years after the injury.
“Someone had a life-changing event and is in hospital, they lived, and they start to make improvements. Then, it’s only when they’re back home and the dust is settled do couples realise it doesn’t feel the same anymore.
“Or maybe the partner has to do a lot of physical care that has challenged the intimacy between them, that shows the emotional connection isn’t the same.”
It’s at this point, Yeates says, couples often decide they need help. But services may have fallen away by the time they reach this point.
“Often, services have fallen away by the time these needs show themselves. It depends on the availability of the community team or third sector organisation as to what support they can offer, which varies on the postcode lottery.”
Some people might reach out to a general couple’s therapist, Yeates says, who has no experience of working with people with neurological conditions, or a neuropsychologist who isn’t trained as a couple’s therapist.
“There are unique challenges here to consider, but accessing the right type of support is difficult.”
Yeates has found, from general feedback, that people would like to be asked more often by clinicals about their sex and intimate live.
“In the services I work in, I always ask people, and most people are relieved to be asked about their sexuality after a brain injury. For a survivor, sex after a stroke can be affected in so many different ways, in the same way people’s memories can be affected.
“People describe the experience of their sexual identity changing, of what turns them on being different, now, a sense of what feels possible to express themselves sexually is different now.
Perhaps they have cognitive difficulties that mean sex can’t be spontaneous anymore, for example, Yeates adds.
“From a couple’s point of view, it’s complicated, because a breakdown in sexuality can often be reflective of an emotional breakdown between them.
“Having therapy on how to do things differently in the bedroom might not be a priority for them, they might not feel emotionally safe or supported with their partner right now, and maybe this needs addressing first.”
When the emotional side of the relationship is good, Yeates says, couples should find ways to be supported to resume intimacy together.
“If someone is paralysed on one side, it’s about finding new ways to explore different positions, for example, or using physical aids, discussing ideas of how to express themselves and enjoy sexual contact in different ways.”
Yeates is happy to have noticed the uprising of a disabled sexuality movement outside of the brain injury area.
“The movement is saying that people with disabilities have the right to an exciting sex life, as much as anyone else.”
But this conversation is important for brain injury survivors, too, he says, as it’s important to think creatively and challenging norms to think outside the box of what sex is, Yeates says.
“This part of life after a brain injury gets overlooked and doesn’t get the attention it deserves. But for a survivor or a couple, it has loads of payoffs with mental health, wellbeing and connection.”
Yeates says there isn’t enough awareness among doctors, either. For example, he says, a person with a brain injury might experience side-effects of medication including loss of libido or erectile dysfunction, which can then lead to depression or low mood, but they often can get passed from a neurologist to a urologist, and no one speaks about things from the perspective of the person’s sexuality.
Yeates also works with brain injury survivors who aren’t in relationships, who want to develop the sexual component in their lives.
“I support people to use escorts a lot in my work, which is a contentious issue. There’s a lot of discomfort on the part of professionals, which is leaving service users high and dry to that dimension of their lives.”
But for those going to see escorts, the pandemic, particularly the lockdown, made it more difficult.
“In the lockdown, people can’t access sexual services in the same way. One client was able to resume going to a massage parlour and get intimate care, but the massage therapist was wearing a facemask and nothing else – if it wasn’t complicated enough already, this has added to it.”
Yeates has co-written a series of leaflets with Headway on relationships and sexuality, and a series of videos for Different Strokes on sex after a stroke, which can be viewed here.
The light and shade of brain injury recovery
When comic artist Wallis Eates saw an ad from Headway East London looking for an artist in residence for the charity’s art studio, she knew she had to apply…
Headway’s East London studio provides a place for members, who all have acquired brain injuries, to create artwork.
Eates’ own line of work leading up to this included autobiographical comics, and digital storytelling with prisoners.
“I’d been looking for ways to help others share their stories or collaborate on story-sharing,” she tells NR Times.
Eates applied for the artist in residency, outlining in her application that she’d like to do comics of Headway members and incorporate their work into them. Eates’s application was successful, and she spent six weeks going into the studio three times a week.
“I was allowed to mill about, sit at the desk and ask what they were up to. They’d share their work with me, and I’d tell them about my project,” she says.
“They’d share experiences with me that I’d remember when I was looking at their work online, later, to see how I could combine it all.”
Eates says the experience made her feel inspired, and she came away with a strong feeling of the sense of community she saw in the studio.
“It was such a vibrant atmosphere,” she says. “I knew everyone was managing all kinds of stuff in their lives, stuff connected with their brain injury, and they were coming to the studio and creating incredible pieces of artwork.
“It reminded me of when I was in school when we did art and I wasn’t precious with it, I was doing it for the love of it. That’s what they were doing in the studio.”
The experience made Eates think about the individual and the collective, and she wanted to explore the dynamic between the two via shared experience.
Eates was taken up by Unbound, a publishing platform that supports people to crowdfund the funds to publish books. She’s currently halfway through her crowdfunding, before her finished book, Like an Orange, is published.
She says the name of the book came from several inspirations.
“One of the members I spoke with, who’d fallen down the stairs, said the brain surgeon he worked with said that the head is like an orange. That’s all he told me, but I assume he meant the elasticity, the texture.
“I later spoke to someone else who said the surgeon told her her brain was growing tumours like Saville grows oranges.”
Eates didn’t know anything about brain injuries before going into the project – and she’s learnt several lessons she hopes to pass on to readers of Like an Orange.
“I kind of knew brain injuries would affect everyone differently, and I went in with that agenda, ensuring the uniqueness of each member comes through.
“The biggest lesson I learnt was when we went on a daytrip to the Tate museum and I saw how invisible disabilities can be. Some of the members had nothing visible about them that suggested they were having a challenge walking down the road, but I knew they were,” she said.
“That really brought home to me how, when we go out onto the streets, we don’t know who we’ll be sharing that space with, we don’t know what’s going on with anyone who’s around us.”
“One chap kept going in front of the road or walking in front of people. At any time, we could be walking down the street and passing someone with a brain injury.”
Eates was also surprised to see such a positive atmosphere in Headway’s studio.
“Two members said they wouldn’t go back to life before their bran injuries,” she says, “because the lessons they’ve learnt have been more valuable since before then. It was extraordinary – I want to share these things in the book.”
Eates is looking forward to the members seeing their work in the final book.
“Most of them didn’t work autobiographically, they did artwork for the pleasure it, for escapism, focused concentration, and the joy of applying colour,” she says.
“It will be interesting for them to see how their artwork and their stories have inspired others.”
Scottish MP talks rehab, criminal justice and out-of-work assessments
NR Times speaks with SNP MP, Lisa Cameron, about her background as a clinical psychologist and how long-term issues related to brain injuries are often overlooked.
Lisa Cameron’s attention is on countless important issues in her role as SNP MP for East Kilbride, Strathaven and Lesmahagow in Scotland, but she tells NR Times why she is particularly interested in policies relating to brain injuries. Before becoming an MP, she previously worked as a consultant clinical psychologist and is chair of the All-Party Parliamentary Group on Disability.
“When I was working as a psychologist, I was undertaking assessments of people with brain injury in relation to memory, executive function and language,” she tells NR Times.
“I’d routinely do assessments in practice, working with people on the front-line with brain injuries.”
Cameron also has second-hand experience, as her husband acquired a brain injury when he was serving in the Armed Forces. Thankfully, he received fast rehab, but the experience only highlighted to Cameron the importance of rehab and ongoing support for brain injury patients.
“I became aware from a personal point of view that these issues are often overlooked,” she says.
“Although someone might have treatment initially, often there are long-term consequences that go unnoticed, or support isn’t there over the long term and I feel it should be, particularly for veterans.”
Cameron often hears about the same pattern unfolding among her constituents, as well as problems accessing financial state support.
She has previously raised the issue of ‘inadequate’ personal independent payments (PIP) and employment and support allowance (ESA) assessments for people with brain injuries in the House of Commons.
“Someone with a physical disability has assessments with the Department for Work and Pensions to be assessed for financial support, where there’s often an underlying brain injury that may be historic on their medical records.
“But assessors don’t realise or understand that their functioning may not return to pre-morbid levels, and that there will be a residual impact on the person’s memory, potentially their language, their ability to plan and their executive functioning, and often these things aren’t picked up with benefits assessments.”
Unless someone has a really traumatic brain injury, Cameron says, they’re often not tested, despite the fact that much less severe brain injuries can often still have a massive impact on someone.
The coronavirus pandemic is exacerbating these issues, says Cameron, who is seeing diagnosis and assessments being delayed even more than usual in her constituency.
“That’s having an impact on constituents in terms of the support they have, and their access to appropriate welfare support,” she says.
Cameron has seen that, unless someone is admitted to hospital at the time of their brain injury, and undergoes extensive testing, there can be years of delay before the person is referred for assessments.
In Cameron’s constituency, there has been such a delay that a specialist service has been running outside of the NHS to alleviate pressure on the NHS for a number of years. She sees the positive and negative impacts this is having on the community.
“It’s preferable if services are conducted within the NHS, but the practicalities of things being the way they are currently mean that’s not happened, the NHS isn’t really able to manage this within the timeframe.
“For people who have been able to access it, it’s had positive benefits for them in terms of getting diagnoses, but the specialist service creates barriers where people can’t afford it, which creates inequality in the system.”
However, the service does get some referrals from the NHS to reduce patients’ waiting times.
“It’s good if people can access it from all backgrounds and it doesn’t undermine services the NHS is providing,” she says.
Away from her constituency and in Westminster, Cameron has found that, in her role as chair of the All-Party Parliamentary Group on Disability, there’s also a lack of understanding of brain injuries.
“People get confused between brain injuries and developmental disorders, spectrum disorders and mental health issues in parliament,” she says.
But Cameron has found this isn’t unique to parliament.
“When I worked in the prison service and going in to do assessments on people, there was a lot of underlying brain injuries that were unassessed. They were demonstrated in terms of impulsivity, lack of planning and poor executive functioning.
“This is a huge issue that needs to be addressed within criminal justice.”
Cameron says there should be basic training for prison officers around spotting brain injuries, and routine testing and assessments for brain injury when people are placed on remand.
When Cameron visited prisoners, she’d hear about prisoners who’d had three or four brain injuries, but no one linked it to difficulties they were having until she asked about their memory or executive functioning.
“Awareness training for prison officers and police officers would be helpful, and assessments for people on remand or in the system already, to ensure they get adequate support and any particular issues linked to their medical condition can be flagged up. This would definitely help recidivism rates.”
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