A father who was on the verge of losing his home and contemplating suicide after doctors misdiagnosed him with ME while overlooking a treatable genetic condition for six years, says the NHS has treated him with “contempt”.
Peter King, 60, from Essex, found out in late 2018 he had haemochromatosis, often known as iron overload, a heritable disorder affecting as many as one in 200 people in the UK.
It causes iron to build up to toxic levels in the blood, potentially damaging the liver and joints, and can lead to cancers and liver disease.
Fatigue is one of the earliest signs, but when the black cab driver saw his GP in 2012 after he began falling asleep at the the wheel, he was sent away with a diagnosis of myalgic encephalomyelitis – chronic fatigue syndrome (ME/CFS).
“I said is there nothing you can do to help me? Medication or treatment? She said: ‘nope’,” he told The Independent.
“So I just left and this was my future as far as I understood, I had ME/CFS.”
However NHS guidelines specify that doctors shouldn’t diagnose ME/CFS without a six-month period of monitoring and testing.
To make matters worse, routine blood tests at the time showed elevated levels of iron in his blood, and the laboratory notes sent back to his GP at Deal Tree Health Centre recommended testing to rule out haemochromatosis if they remained elevated – but this did not happen.
Over the next six years Mr King, his wife Lisa and their two sons went from living a comfortable family life to surviving on benefits, doing paper rounds and odd jobs to make ends meet, and fighting to keep possession of their home.
ME/CFS is not currently treatable, and living with this knowledge and steadily deteriorating symptoms that would leave him confined to a chair for hours took a psychological toll.
“The anxiety and stress levels on me were enormous,” he said. “The potential for not recovering, as time went on, got greater and greater.
“I had to take antidepressants, and I still do. There was a point, a few episodes, where I was planning to commit suicide.”
Another side effect of his antidepressants was that he lost his libido.
“It’s financial, physical, emotional, everything – my whole identity has just been obliterated,” he added.
But despite this toll Mr King was only referred to an ME/CFS specialist, Dr Abhjit Chaudhuri at Queen’s Hospital, Essex, last year – on his therapist’s recommendation – and his world changed again.
“He examined me and said, ‘you do not have chronic fatigue syndrome / ME’,” Mr King said. “This was like a bombshell. I said it was ridiculous, ‘what are you talking about?’”
Referral to a haematologist finally confirmed his chronic fatigue was a symptom of hereditary haemochromatosis and he was immediately started on weekly venesections (the same process as giving blood) with his iron levels beginning to return to normal.
But this new diagnosis has rocked him again. He is again having therapy to come to terms with the last six years and venesections have – so far – not had a lasting impact on his other symptoms, thought this may take time.
The biggest factor though is the six years of pain, stress, lost earnings and family time.
“Had they done the right thing and referred him in 2012 … he would have been back to work in six weeks,” Lisa King said. “This was all avoidable.”
The family are awaiting an appointment for an MRI to see if there has been any impact on Peter’s brain and a complaint is outstanding with NHS England and the practice, but they say the response from the health service has been unsatisfactory.
“I’m not a bitter man,” Mr King said. “I don’t want to retain hatred and bitterness about what’s happened to me, but I find it inconceivable that professionals can make such an obvious and glaring mistake as this, with such dire consequences for us, and then they have treated it with contempt.”
A spokesperson for Deal Tree Health Centre said it could not comment on individual cases but patient care and wellbeing is “paramount”.
They added: “While haemochromatosis is a reasonably common genetic disorder in the UK, many of the symptoms of iron overload such as lethargy, weakness, sleepiness, joint pain, etc, can be caused by other medical conditions or attributed to stress or ageing.
“As a practice we have taken the opportunity to ensure that all our GPs are aware of the varied symptoms that may indicate this condition and the correct pathway for appropriate investigations.”
Haemochromatosis UK told The Independent that 200,000 people in the UK are estimated to have to have the genetic mutation that causes iron overload, but only 10,000 have a diagnosis.
“So there is significant underdiagnosis”, the charity’s chief executive David Head told The Independent. “This is in large part because the early symptoms like joint pain, fatigue, impotence is one, doctors won’t think of haemochromatosis.”
Research by the charity which surveyed 2,000 sufferers found 80 per cent reported mental health symptoms, from memory loss to severe depression.
“This is a cost to society,” Mr Head said. “It’s a cost to the NHS – from things not being diagnosed properly – and it’s a cost to individuals.”
The charity is working with the Royal College of GPs to develop a training programme for doctors, and with the National Institute for Health and Care Excellence (NICE) to standardise the diagnosis and referral process.
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