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 stroke survivor turned rehab provider
When Mark Fricker suffered a stroke aged just 32, the lack of access to dedicated rehabilitation inspired him to retrain as a stroke rehab specialist. Here, he shares his inspirational story
Mark Fricker is very matter-of-fact about the impact of his stroke.
“I view it as a positive moment in my life,” he says.
“I now help people walk again, which is very rewarding, and I feel I have been given this chance in life to help others.”
Back in 2002, when Mark suffered a devastating stroke while on holiday, the outlook seemed bleak. With nowhere near the access to specialist rehab Mark knew he needed, he resolved to do it himself.
Eighteen years later, Mark is now helping others who are in his very position back in 2002, showing them how possible it is to rebuild your life and achieve your aspirations.
Having gone back to university to retrain, he has become an ARNI stroke rehabilitation specialist, supporting scores of people each year to rediscover new possibilities in their recoveries.
As the founder of Destination Fit, a studio in Weybridge, Surrey, Mark supports stroke survivors, alongside people with neurological conditions including Parkinson’s and Multiple Sclerosis, on their journey to recovery. He has also established Mark Fricker Neuro Rehab, which extends that specialist support into at-home rehabilitation.
“With limited NHS aftercare or resources once a stroke survivor has left hospital, I wanted to offer help to people who were in the same position that I was and to show them with hard work, determination and a commitment to succeed they can progress towards regaining some or all of their lives back,” says Mark.
Mark’s dedication to supporting stroke survivors came from his own experience of recovery, which saw him suffer a major stroke while on a motorbike holiday on July 1, 2002. He was only 32 with an eight-year-old son.
“I was with a group of friends on holiday riding our motorcycles back from Germany when I collapsed and passed out,” he recalls.
“I crashed into a friend in front of me and we both fell off at high speed. I don’t remember this, in fact, I don’t have any memory for around six months prior to the stroke.
“I remember waking in a small Belgium hospital with a broken right arm and dislocated shoulder and not being able to move my entire left side of my body, I had blurred vision and could hardly talk.
“I was then flown back to the UK and it was only then that we discovered I had had a haemorrhage on the brain.
“I spent six weeks in a stroke unit in London before being discharged, still paralysed and unable to walk or use my hands and arms.”
Mark’s realisation that access to specialist rehab was not readily available was devastating, but also inspiring.
“The aftercare for stroke survivors then, as it still is now, was a 30-minute physio session once a week for six weeks,” he says.
“I attended one of these sessions for the first week, realised that it would be nowhere near enough rehabilitation to get me walking again, and decided I would research stroke rehab and do it myself.
“I set myself a long term goal of completing an ironman triathlon within five years. I knew I had a long road ahead of me as I couldn’t even stand unaided but was determined I wouldn’t stay in a wheelchair at the age of 32.”
Mark set aside six hours each day for his rehabilitation exercises, and refused to be deterred by the fact he could not move his left side.
“The first time I was able to pick up a marble was when I knew I would overcome my disability,” remembers Mark.
“I cried with joy and that one action motivated me more than anything else.
“I spent the next two years working on my rehabilitation. I could eventually walk with a stick, hold a knife and fork and drink from a cup.”
Mark’s hard-earned recovery then made him realise the desire to help others who faced a similar long and difficult journey ahead.
“I decided to retrain and went back to university to study sports science and in 2007, five years after my stroke, I completed an ironman triathlon,” he says.
“I also passed the level three personal training qualifications and set up Destination Fit in 2011 to help others become active and healthy. I became an ARNI stroke rehabilitation specialist and am trained in Parkinson’s and MS conditions.
“I wanted to give people hope and to prove to them that with determination and support they can achieve their own personal goals”.
In the nine years since Destination Fit has been operating, Mark and his team have helped people of all ages and with a variety of conditions, improving their lives and, importantly, vastly increasing their belief in their own ability.
One client, Issy, suffered a stroke aged only nine and whilst at school. She was left completely paralysed on her right side and with some cognitive issues. Her parents were told she would never walk again, or have the use of her right arm.
She has attended Destination Fit twice a week for 18 months, and her sessions have enabled her to dance, run and rediscover many activities which previously seemed impossible.
Another client, Doug, is 71 years old, and suffered a stroke 15 years ago. He has been working with Mark for two years now, initially to improve his walking. As a result, he was able to walk around his local garden centre – an unthinkable accomplishment prior to his rehabilitation work.
“Having been through this gruelling experience of recovery myself, I am committed to giving people hope and belief they will get through it and can achieve their goals. That is what we are doing with so many clients, who are achieving fantastic results, and what we will continue to support people to do,” adds Mark.
Video: Watch the latest edition of the Curious Case Manager
Episode six of the Curious Case Manager features Fifth Sense, a charity for people affected by smell and taste disorders.
In this episode Vicki Gilman talks to Duncan Boak, founder of Fifth Sense and Nina Hill, director of development and operations.
They discuss Duncan’s own experience of loss of smell after he suffered from a traumatic brain injury, and how this led him to establish the charity.
Duncan and Nina explain the history and development of the charity and explain how they support individuals with smell and taste disorders through providing information, advice and access to a network of specialist clinicians.
Other topics include the causes of smell and taste disorders, smell training, smell memory and practical strategies to improve the quality of life of sufferers.
‘Lockdown inspired me to run a marathon’
Having suffered a brain injury which left her struggling to rebuild her life, Helen Whiteley found salvation in running. Here, she tells how she went from running for the first time to completing the Virtual London Marathon in only eight months.
“On November 24, it will be eight years since I suffered a traumatic brain injury (TBI) from a fall at home. I was found unresponsive at the bottom of my staircase at home by my husband Simon; I have no recollection of how I got there.
“I was initially taken to Huddersfield Hospital but once I was stabilised I was transferred to the Leeds General Infirmary neurosurgery department. It was here I was diagnosed with an acute subdural hematoma and fractured skull and was taken immediately into surgery for an emergency craniotomy to evacuate the hematoma. I was then placed in an induced coma on the neurosurgery ICU ward, where I stayed for a number of weeks.
This period was extremely traumatic for my family, especially my daughter Isobelle and son Isaac, who were only 13 and 9 at the time. My family were told that is was unclear as to whether I would regain consciousness once the drugs were withdrawn, and if I did, what permanent physical and mental disabilities I could be faced with for the rest of my life.
Fortunately, I did recover, albeit very slowly, although the brain injury has changed my life and who I am.
Following my accident, I suffered acute anxiety and was unable to leave the house and struggled with my balance needing a stick to help me walk. When I eventually was able to go out, I needed to be accompanied at all times. The simplest things were a struggle due to my lack of self-confidence and awareness of situations; I was taken out regularly by my physio to ensure I was able to cross a road safely.
I found it difficult to interact and communicate with people and was unable to cope in busy or new surroundings. I had, and still have, a very poor memory, struggle with cognitive functions and have lost my sense of smell and have a reduced taste.
I needed coping strategies like lists to ensure simple daily tasks like cleaning my teeth were completed. In February 2014, I suffered a seizure and have been diagnosed with epilepsy which is now controlled by medication.
I know I am not the same person I was before. I have no filter, speak my mind and can be immature, much to the horror of my children. These are all consequences from my brain injury.
Furthermore, I no longer work full time as an accountant for the NHS, as I had to retire due to ill heath, but I now work part time in a library which I do really enjoy.
I have been on a long challenging journey to get to where I am today but I have had the support of my family, my parents, occupational therapy, physiotherapy and the independent living teams.
Running came into the equation in January 2020, when my friend Gill signed me up for the Couch to 5K beginners running program with my local Northowram Pumas Running Club. I found the prospect of taking part in this extremely scary, very challenging and somewhat out of my comfort zone, having never run before.
At the first session I nearly went straight home but the support from the club run leaders was amazing. I progressed slowly on the programme, first running one minute then walking one minute, and slowly increasing this. On March 7, I did my first 5K park run with the Pumas. I was overjoyed that I had achieved this but then lockdown happened and everything changed.
During lockdown, I continued with my running. Through challenges set by our C25K run leader I felt confident to go out and run on my own and eventually I tried running off-road. The running club have been fantastic during lockdown, setting challenges for us to do and I set myself mini challenges, slowly progressing to run 5 miles, 10K, 10 miles, and 2 half marathons.
I had never taken a selfie before I started running, but as I made progress the pictures began to get posted on the running clubs social media. I have totally embraced the running bug and I am amazed by how far I have come in such a short period of time.
Prior to January of this year, I had never run or even thought I could after walking with a stick for the majority of my recovery to help with my balance issues. Running has helped in my recovery by increasing the confidence I have in myself and making me more independent, as well as introducing me to a new social group.
In hindsight, if it hadn’t been for lockdown, I wouldn’t have continued to run as I have. I would have been unsure of running with groups of different people and would have felt pressured. Lockdown enabled me to build up my running at my own pace with virtual support from the Pumas.
I decided to take on a new challenge and registered to take part in the Virtual London Marathon on October 4, running alongside Gill and Nic from the Pumas and following a route mapped by the running club, finishing in my hometown of Halifax at the historic Piece Hall.
This would be just a month before my 50th birthday, and nearly eight years since my life changing accident – as well as being only 8 months since I put on my first pair of trainers!
I only had one month of proper training prior to the marathon and the furthest I had run to that point was 18 miles, but I was determined to complete it. I committed to raising funds for Headway, as well as for the neurosurgery department at Leeds General Infirmary who cared for me after my accident.
I wanted to give something back, which hopefully in a small way will help support patients and their families at this critical time and to say thank you to the brilliant consultants and nurses who saved my life.
On race day, we set off from the Wraggles in Queensbury at about 8.40am. We had so much support during the run. Cars beeped and total strangers clapped and cheered us on. I was so emotional and absolutely amazed that I’d done it and finished it in 05:37:45.
I know how very lucky I have been to recover from my injuries with only minor disabilities, but there are many people who are not as fortunate as I have been in my recovery. What I am doing is for them.”
To support Helen in her fundraising for Headway and the Leeds General Infirmary neurosurgery department, visit https://www.justgiving.com/crowdfunding/helenwhiteley
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