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.
Inspiring a brighter future for residents
A neuro-rehab provider which opened its first facility in Worcester shortly before the first lockdown has succeeded against the odds – and now has plans to expand in 2021, as NR Times reports.
Inspire Neurocare provides support for people with a variety of neurological conditions, offering rehabilitation, respite and palliative care.
The firm opened its first specialist care centre in Worcester in February 2020, and this will be followed by further facilities in Basingstoke and Southampton in 2021/22. Inspire prides itself on a novel model of care that has “no limitations on the possibility of recovery,” all led by director of clinical excellence Michelle Kudhail.
A key element of the centre’s approach is the team’s commitment to understanding that every patient, and the circumstances that led them there, is different.
Whether this means enabling people to leave high dependency hospital units and develop their independence in a modern, home-from-home environment, or providing long-term support or end-of-life care, the service is designed to work around the needs of each patient.
Michelle’s background means she is the ideal person to head up the Inspire team, having worked as a neuro physiotherapist in the NHS until 2010, before moving into the private sector.
She takes an holistic approach to patient care, which has led to the creation of a team of life skills
facilitators and therapists at the provider, who develop their care around the needs of everyone.
“The life skills facilitators support and assist the residents to do as much as they can for themselves,” she explains.
“As the name suggests, their role is more than a carer; it is to facilitate the residents in all aspects of their care, whether that’s helping them get their breakfast, choosing what they are going to wear, or taking their medication.
“Their skills are broad because we want them to be involved in all aspects of the residents’ care; and because we want to provide what they need at the time that they need it.
“Roles such as this also enable us to evaluate the outcome of any action. If a resident has been given pain medication, a facilitator can assess whether it’s been effective, rather than a nurse giving the medication and then not seeing them until the next round.
“We also know from a therapy perspective that some patients don’t respond well to having therapy at a fixed time on a particular day; they simply might not feel like doing it. Our facilitators mean we can best provide interventions for the resident when they want them.”
Alongside this role, the facility also employs a wellbeing and lifestyle coach, focussing on the health and emotional needs of both residents and their relatives, particularly during a time when COVID has caused a lot of uncertainty.
Michelle says: “We wanted somebody that had relevant experience in working with residents, particularly with neurological conditions but also with a well-rounded experience so that they would not just focus on one aspect.
“The idea is to have somebody who can offer support in all areas, whether it be psychological, emotional or physical.”
Staff are overseen by experienced rehabilitation consultant Dr Damon Hoad, who shares his clinical oversight with the interdisciplinary team and supports patients on their journeys.
The rest of the clinical team have a wealth of experience within neuro services in and around the region.
The design of the Worcester facility draws on Michelle’s years of experience, and she had the opportunity to use her skills to help develop the purpose-built home.
She says: “We’ve had a lot of involvement all the way through from knocking down the pub that was there, to seeing it grow. Having the opportunity to be involved from the ground up was fantastic.
“Within the build itself we try to consider the needs of younger people, and so the inside of the home is very much a contemporary design and a lot of research has gone into its development to ensure it has the correct, up to date, equipment.”
Adding to the sense of autonomy staff are keen to foster, is the independent living flat, which staff are able to support via environmental controls.
With soundproofed rooms, residents can enjoy listening to music or watching films without disturbing others.
In common with all care facilities, the impact of COVID means that a lot of thought has had to go into the long-term plans for the property. The recently-built visitation suite – known as the ‘family and friends lounge’ – allows visitors to meet their loved ones in a safe and COVID-compliant way.
The suite includes separate access for visitors from outside, and features a large transparent Perspex screen separating each side of the suite, while an intercom enables contact-free communication.
As well as creating an infection barrier, the screen also assists when it comes to residents who may struggle to understand that they are unable to hug their relatives, while still allowing them to communicate and see each other up close.
After each visit, the room is cleaned and decontaminated in preparation for the next visit.
As Michelle explains, human contact is essential for emotional wellbeing, adding: “We’ve tried to create an environment that is as safe as possible, because we know how important visits are to the residents but, more particularly, to their relatives.
“Supporting the residents through this time is vital. We have residents that are used to going out and doing things in the community and we have had to adjust by being creative in the ways in which they can still access things that they enjoy and still communicate with their families.”
And while the pandemic has certainly delivered some challenges, Michelle and the Inspire team have been able to look at some positive outcomes.
She explains: “One of the positives for us is that it gave the team and the residents the opportunity to really get to know each other.
“We could also develop the life skills facilitator role to its truest form, because everybody was very much working together dealing with the crisis, supporting each other and supporting the residents.
“It was a testing time but it actually it brought the team together, bearing in mind the facility opened literally as everything was going into lockdown.”
The creation of the COVID-secure visitation suite is just one example of the creativity with which all at Inspire approach care, Michelle says.
By looking to build collaborations with other organisations, Michelle also hopes to share her hard-won knowledge, potentially becoming involved in research and training in the future.
Despite the upheaval of its first few months, the Inspire team has already achieved some successful patient outcomes.
One such success story is the case of Adrian, who came to the centre for specialist neuro-rehab following a car accident in which he suffered a severe brain injury. In the months that followed, Adrian’s journey enabled him to walk out of the service and return home to his wife and children.
(See Adrian’s story below – and read more here).
While the coming months may bring more challenges, as COVID lingers and vaccinations are rolled out, the Inspire team seemingly has the skills, approach and dedication to rise to whatever the future holds.
‘My brain trauma caused my head to turn 180 degrees’
Sarah Coughlin experienced the horror of her head facing backwards after sustaining a brain injury. Here she shares her recovery journey with NR Times.
“I was wondering why my windscreen had black lines across it – until I realised I was looking out of my back window.”
Sarah Coughlin recalls the horrific moment she realised her head had turned 180 degrees to face backwards, due to brain trauma she had suffered after sustaining a head injury.
In the immediate aftermath of the injury, Sarah recalls little seemed wrong aside from a persistent headache.
But five days later, when she woke up late and rushed out to her car, the extent of what had happened became all too clear.
“I could feel this searing pain through my shoulders and my back,” says Sarah, as she realised her head had turned around to look out of her rear windscreen.
“It was quite difficult to turn my head back around and keep there but after a while I managed it, though the pain did not go away.
“I thought I had just slept funny and once I had properly woken up the sore neck would probably calm down. But when I got to work I still felt awful.”
This began the long process of diagnosis, which took years to achieve.
“I went to A&E every week for three months because the pain wouldn’t go away and I was still getting neck spasms,” she remembers.
“I was told it could have been a slipped disc, a muscle injury or having slept awkwardly. It changed each time.
“I was in agony constantly, but I still wasn’t diagnosed for at least another two years.”
At first only Sarah’s neck and walking were affected, but over the course of a year she developed spasms, optical neuralgia, pressure on the occipital nerve which runs through the neck up into the scalp, causing tremors, fits, paralysis and fatigue.
Eventually, she was diagnosed with dystonia – a condition which causes involuntary muscle spasms and was the cause of her head rotating.
Doctors also told her she had a Functional Neurological Disorder (FND), a variety of medically unexplained neurological symptoms which appear to be caused by problems in the nervous system.
After her injury in 2014 and its consequences, Sarah could no longer drive, do her job as a teaching assistant – a role she loved – or take part in the same social activities as before.
She also lost touch with many of her friends and hardly left the house as she was scared of people staring at her and judging her for the way she walked and moved.
The 37-year-old, from Fazakerley, Liverpool, says: “I used to be quite fiercely independent – so to go from doing so much to not being able to do anything was the hardest transition.
“I felt a real sense of loss for the life I had when I was first diagnosed.”
In 2017, Sarah discovered The Brain Charity, a national charity based in Liverpool which provides practical help, counselling and social activities for people with all forms of neurological condition.
She made new friends by joining the charity’s craft club and received help getting carers allowance for her partner John and with finding a new home as she could not use stairs safely anymore.
One night in Autumn 2019, John woke up to find she had turned blue and stopped breathing as a spasm had caused Sarah’s neck to contort, closing her throat and airways.
The only solution was a specialist bed which cost £10,000, which was achieved through fundraising and grant funding. She managed to raise the money last year, and now has a bed which uses deep massage cyclo-therapy to improve circulation and reduce her symptoms.
Sarah is now a passionate supporter of The Brain Injury Charity for the assistance it has given, and is keen to encourage people to donate. The charity’s resources are currently under unprecedented pressure as a result of the COVID-19 pandemic, with a 70 per cent increase in referrals met with a huge decrease in fundraising.
“There’s lots of things I can’t do anymore but The Brain Charity has freed me from staring at four walls,” says Sarah.
“They helped me achieve goals that without them I wouldn’t have been able to do.
“It seems obvious, but the more money people donate, the more people the charity can give the vital support I found so important.
“I want other people to have that place that is safe and secure, in an environment with people who have had similar experiences.
“The Brain Charity has given me such incredible support and I’m so grateful for it.”
‘I’d never imagined using Zoom as part of my physio placement’
Every aspect of neurophysiotherapy has had to adapt with the onset of COVID-19, including how students prepare for a career in the profession. Here, student Tabitha Pridham discusses her experience of a pandemic placement.
Prior to the COVID-19 pandemic, the concept of physiotherapists routinely holding sessions with clients remotely was quite unlikely.
While used to some degree in a small number of practices nationally, telerehab, as it has now become widely known, was not on the agenda of many.
But due to its seismic rise during the past few months, with physios realising the potential of digital and virtual means to see clients when meeting in person isn’t possible, it seems telerehab is here to stay.
While it was never part of the studies of aspiring physiotherapists, they are now having to adapt to something that will most likely be part of their future careers.
“The very nature of physiotherapy is that it is hands on, so it seemed really strange to me at first that we would be using Zoom to do online physiotherapy,” says Tabitha Pridham, a third year student at Keele University.
“But I have seen how useful it can be, particularly for those patients who are very advanced in their recovery and maybe can take part in a few classes a week remotely. I think it can be valuable in addition to face to face treatment.
“I do believe it will carry on into the future, particularly in private practice, so have accepted that telerehab will be something I will be using in the longer term.”
For Tabitha, currently on a placement with neurological physio specialist PhysioFunction, telerehab is not the only big change from her expectations pre-pandemic.
“The use of PPE is something I have had to adapt to,” she admits.
“Every time you see a patient in person, you have to change gloves and thoroughly wash down equipment, to be compliant with the very high hygiene standards.
“This can be time consuming, and when you have back to back appointments I’ve found it can be quite stressful to ensure you’re doing everything you need to do in addition to your work with patients, but that’s something I’m learning as I go.
“Wearing a mask and visor isn’t always ideal for communication, but that’s something else I am finding gets better with time and use. Although it can be quite a juggle when you’re trying to treat a patient with one hand, and trying to stop your visor falling off with the other!”
Tabitha is based in the clinic four days a week, but has to work from home one day a week due to the need for a regular COVID-19 test, to ensure the safety of clients and colleagues alike.
“I have my COVID test every Monday, so I carry out consultations by Zoom that day, and providing my test comes back negative, I see patients in person Tuesday to Friday,” she says.
“I find the mix of telerehab and practical experience is really useful, especially as we are going to be using Zoom and the likes in the long term.”
Having had a previous placement cut short in April due to the pandemic, Tabitha is grateful she is able to get such experience, which accounts for vital clinical hours training for her degree course.
“Some of my year group were taken off their placements and have had to do everything virtually, so I’m lucky that I have been able to continue in a clinic,” she says.
“I’m still getting the same training, as aside from the PPE and new rules around social distancing, clients get the treatment they always have done so the practical work is the same.”
Tabitha is set to graduate in summer 2021 and has the experience of her studies, supported by three years of placements, to help her build a career in physiotherapy.
“In some ways this has been a really weird time to be working in physio, but in others it has been a very good time. This kind of experience prepares you for anything and everything, and the use of telerehab has shown me what it will be like in the future,” she adds.
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