Barrister Daniel Sokol on how failure to disclose a condition in childhood caused serious problems in adulthood, and led to a legal case with a large settlement figure.
In May 2017, a new bundle of papers landed on my desk.
As a barrister specialising in personal injury, I am no stranger to tales of despair and tragedy but nothing prepared me for this unusual case.
The potential claimant was a 62-year-old man, Mr T. Some months earlier, as part of an application to live in a council flat, Mr T had asked for his medical records. When he received them, he stumbled across a letter from a surgeon who operated on his undescended testicles when he was 13. The letter was addressed to his GP:
20th August 1968
This is a very curious state of affairs. Mr … [Consultant Surgeon] thought his lad looked a bit odd when he came in for his bilateral orchidopexy and we arranged for him to have a buccal smear. […]
Shortly after the operation we were informed that he is, in fact, a nuclear female, probably a Klinefelter, though this is by no means confirmed yet. […]
We had a discussion about this and I would have thought it probably best to say nothing to the parents or the patient at this stage as it can only lead to needless worry about an untreatable condition.
Mr T could not believe his eyes. Could this explain his hairless body, breasts, and feminine features? His micropenis and sexual problems? Could this be why he was picked on at school and beaten by his father? Could Klinefelter explain the terrible emotional, behavioural, and psychological problems he has had since childhood?
Mr T lost no time. He took the letter to his GP and asked to be tested.
In April 2018, nearly 50 years after the doctors suspected the condition, Mr T found out the truth: he had Klinefelter's syndrome. "It made sense to me," he said, "and made sense of everything that had happened before."
Around 1 in 600 live male births involve Klinefelter's and the extra X chromosome can lead to a female appearance, weak muscles, poor endurance, small testes and penis, infertility, learning difficulties, low self-esteem, and behavioural problems.
In 1968, as now, the main treatment was testosterone replacement therapy (TRT) to induce/enhance pubertal development, and/or treat hypogonadism in adults, and also interventions such as physiotherapy and psychotherapy.
I first met Mr T in person in June 2018. He was a tall, soft-spoken man with a notable lack of self-esteem. He repeatedly called himself a failure and felt his life had been wasted.
We discussed his childhood.
His school days were a painful memory. Socially awkward and unable to make friends, he was bullied at school by his peers and teachers and at home by his father and sisters. At school, when he went into the showers after football, he would be chased out by the boys for "being a girl". He had no muscle bulk, a tiny penis, and no signs of puberty. When he went to the girls' changing rooms, he would be chased out for being a boy. When he returned home, his knees still muddy, his father - a tough, authoritarian Irishman - would beat him.
Embarrassed by his son's unmanly demeanour, Mr T's father forced him to take up boxing. Mr T showed no talent for boxing and was invariably pummelled by his stronger, more aggressive opponents.
Even as a child, Mr T felt something was wrong. He felt different from everyone else but could not make sense of his difference. He found it easier to relate to animals than people and avoided social contact.
At 14, Mr T left school. He trained as an apprentice butcher before joining the Co-op as a trained butcher. He developed social anxiety and behavioural problems. He would enter into fits of rage and suffer debilitating panic attacks at work. He had dizzy spells and ringing in his ears. He could not hold down a job and fell into debt. He started drinking alcohol to give him the courage to leave the house.
So varied were his symptoms that Mr T became something of a medical mystery. Between 1980 and 2016, he had visited his GP more than 350 times with complaints ranging from palpitations to anxiety. In 1986, a GP referred him to a psychiatrist and wrote in his referral letter:
It is totally impossible to make head or tail of his symptoms, which are obviously aggravated by anxiety and depression if not caused by them.
The only clue I have to this awful mess is that in 1968 he was found to be probably Klinefelter's. Do you think this is the underlying problem?
Over the course of Mr T's adult life, GPs and psychiatrists noted the undisclosed Klinefelter's but no one chose to discuss this with him or refer him to a geneticist or endocrinologist.
The only person who showed any love and affection for Mr T was his mother. "She was the only supportive person I had," he said. But she too became exasperated by his erratic behaviour. In July 1999, she wrote a pleading letter to his GP:
My name is Mrs T. I am the mother of Mr T. I am writing to you in sheer desperation about him and his behaviour. He is on tablets for I'm not quite sure what, whether it's for dizzy spells, vertigo or what, for he won't tell me properly what is wrong, but sometimes I think he's schizophrenic. His father and sisters and me have put up with his tempers since 25 years ago and 2 of his sisters just have had enough and won't speak to him anymore because of how he's treated us, his parents and them also. I and his father have forgiven him a million times and let him back into our lives but this last month has been hell altogether. Thank you very much. I hope you've been able to read this and maybe help him as well as all of us.
Her letter went unanswered.
Mr T had very few sexual encounters. His penis was so small that penetrative intercourse was near impossible. He is convinced that his sexual inadequacies caused the breakdown of his intimate relationships.
In the early 1980s, he fell in love with a woman. The relationship did not last long but, in the course of it, she gave birth to a daughter. The baby's skin was far darker than that of Mr T or his partner. "I didn't really think about this," he told me, "I just thought it was one of these things." Mr T was unaware that he was infertile due to the Klinefelter's. The baby was not his. Mr T continued to support his partner's daughter even after the relationship ended.
In between periods of homelessness, Mr T hopped from short-term job to short-term job, at one time cleaning windows and patrolling farms with security dogs in exchange for cash. For years, he lived alone in a caravan.
One day, Mr T was approached by the Jeremy Kyle Show, a then popular TV talk show in which guests confronted each other about a controversial aspect of their lives. The show's producers wanted to conduct a paternity test and reveal it on air to Mr T and his daughter. Although desperate for money, he wisely declined.
When I left my consultation with Mr T, I felt utterly drained of energy but determined to get him justice. Although we could not turn back the clock, recover his lost years, or mend his broken relationships, we could get him some compensation. Daniel Thomas, my instructing solicitor from NewLaw, and I prepared a case in negligence against the doctors who knew about the diagnosis but said nothing.
We assembled a team of experts, including a GP expert who had practised medicine in the 1970s, an endocrinologist, a psychiatrist who could comment on the mental health aspects, an employment expert who could value how much Mr T would have earned as a butcher from the 1970s to the present, and a pensions expert to estimate his loss of pension.
We then sent the defendants a Letter Before Claim and waited for their response. The thrust of the argument was that, as far back as 1968, the doctors should have disclosed the possible diagnosis of Klinefelter's to Mr T (or, when he was a minor, his parents) and referred him to a suitable specialist. Those failures amounted, we said, to negligence.
If Mr T had been referred, he would have been diagnosed and treated with testosterone replacement therapy. He would have received counselling and would probably not have lost his job as a butcher in the early 1970s. He would also have realised much sooner that his partner's daughter was not, in fact, his biological daughter. In short, his life would not have been the turbulent, unhappy mess that it was.
Further, as a result of the untreated hormone deficiency, Mr T's life had probably been shortened by 5 years.
The Defendants' Response
About 10 months later, the defendants responded. They argued that there was no obligation to tell patients the truth about their diagnosis in the 1960s, 70s and 80s but accepted that the surgeon was wrong when he informed the GP in 1968 that Klinefelter's was untreatable. They conceded that, from the 1990s onwards, the doctors were obliged to tell Mr T about his diagnosis.
The defendants questioned whether Mr T would have engaged with the treatment and argued that earlier treatment of the condition would have made no difference to Mr T's psychiatric problems. We were unconvinced by the defence.
Although the defendants disputed some of our claims, they showed little appetite for a fight on the issue of negligence. The case was now about calculating damages or, more bluntly, how much money Mr T should receive as compensation.
When he finally discovered the truth, age 63, Mr T was in two minds about hormone replacement therapy. "I've lived my life now," he said. "It's too late to change."
I next saw Mr T in October 2019. His newly grown beard was proof that he had started TRT. It was the first time he had showed physical signs of puberty. He was a completely changed man, more confident and animated than before. Fortified by a newfound joie de vivre, he had even entered into a new relationship and was keen to point out, on several occasions, that "I have full erections and the sex is amazing".
According to the endocrinologist, the success of TRT in Mr T's 60s suggested it would have been highly effective in his early teens.
In May 2020, 3 years after the matter first landed in my inbox, Mr T accepted an offer of £700,000 in settlement of his claim. The bulk of this was compensation for a lifetime of lost earnings and pension. For the first time in his life, Mr T was financially secure.
Since Hippocrates, doctors have grappled with the question of whether to tell patients the truth about their condition. The most common argument against disclosure was that a grim truth could lead to harm. Mr T's story is a powerful reminder that withholding the truth, however benignly intended, can also cause great harm, damaging lives in countless and unpredictable ways.
Ken Darzy, consultant in general internal medicine, diabetes & endocrinology, gave expert evidence in the case. He summed up the clinical aspects for Medscape UK: "Delayed diagnosis of Klinefelter's syndrome into late adult life has been reported in the literature and induction of puberty through introduction of testosterone replacement therapy can still be achieved, albeit with concerns about the psycho-social and physical impact of delayed pubertal onset especially in older patients and those with certain co-morbidities. In this case, the physical health of Mr T and the support from his partner were crucial in achieving risk-free and very satisfactory sexual and physical outcomes.
"The improvement in Mr T's psychological health with testosterone replacement therapy points out that psychopathology and behavioural problems in patients with Klinefelter's, though primarily genetic in aetiology, can be exacerbated by testosterone deficiency. It is imperative that Klinefelter's syndrome is considered in the differential diagnosis of any patient with evidence for primary hypogonadism irrespective of age and pubertal stage, as some patients with Klinefelter’s syndrome may have enough testosterone production to take them through pubertal development before they develop worsening testosterone deficiency due to progressive Leydig cell failure later in life."
Daniel Sokol is a barrister and medical ethicist at 12 King's Bench Walk, London. He is the author of Tough Choices: Stories from the Front Line of Medical Ethics (Book Guild, 2018).
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Cite this: Daniel Sokol. £700,000 Klinefelter's Settlement: Why Honesty Matters in Medicine - Medscape - Jun 05, 2020.