Kevin's mum, Margaret, recounts the beginnings of the tragedy in 1997, a year and ten months before Kevin died. During that year, 19-year-old Kevin presented on a number of occasions with persistent back pain. Without any improvement, he was referred to an orthopaedic consultant in the autumn. Blood tests revealed high levels of calcium (3.51m.mol/l). This level of calcium causes serious damage to health and is most commonly an indication of primary hyperparathyroidism or malignancy. Other parameters were also raised. All of these abnormal results were underlined in the laboratory report. When the consultant wrote to Kevin's GP, he noted his intention to see him again early in the New Year but underplayed the high calcium levels and ignored a plasma creatine level indicative of more than 50% loss of overall renal function. That letter is not on the GP’s file and the consultant’s intention to see him again was never conveyed to Kevin.
Kevin’s file contains a notation by the Consultant’s secretary following subsequent contact by Kevin’s Mum. “Telephone call from patient’s mother. She is extremely worried about her son. She wishes you to know that she thinks he may be depressed also. Failed his first-year exams, repeating and not doing well either, finding it hard to study. He is now remaining in bed a lot. She has arranged an appointment with Dr X (a psychiatrist) tomorrow and would like to have results of bloods, bone scan, etc for the consultation. She wonders if he really has a back problem. What can I tell the mother? She wished to speak to you. Results in file". The doctor’s response was "fax results to Dr. X" and there was no direct contact with the mother or the patient.
After this, Kevin had repeated consultations with his GP, physiotherapist and other services, but nobody diagnosed his condition. He spent the summer of 1999 in the US, and on his return attended his GP complaining of lethargy, occasional vomiting and continuing bone pain. Blood and urine samples were taken, with test results being telephoned to the surgery the next day and written on a Post-It note by the practice nurse, who drew attention to the high calcium level (now at 5.73m.mol/l). However, the GP did not mention this in his letter of referral to the hospital, focusing only on those elements of the blood test results which supported his own diagnosis of Leptospirosis, but he did send the Post-It with the letter.
When compiling the file in the hospital, the Post-It note containing those vital calcium results was stuck to the back of the letter and was not seen until six weeks after Kevin’s death. The standard blood test in that particular hospital did not include testing for calcium levels. So, throughout his time there they remained unaware of Kevin’s dangerously high calcium levels, and a diagnosis of nephritis was made.
At this time, even as his condition deteriorated rapidly, no medical personnel seemed to appreciate how ill Kevin was. He became dehydrated and described muscle pain and neurological problems – his medical notes quote him as saying “I have crazy thoughts coming into my head”. These notes also show advancing renal failure. Margaret says 'Two crucial days were lost during his stay in that hospital – further missed opportunities as yet another point of contact failed Kevin.'
Finally, Kevin was transferred to a tertiary hospital and it was there that the family first heard concern over calcium levels of 6.1m.mol/l. Kevin's care was left to be managed at Registrar level - senior personnel were not alerted and more aggressive treatments were not available at the weekend. Margaret cannot say if that would have resulted in a better outcome' but it would be nice for me, his mother, to know that he was given every chance'.
Margaret tells how Kevin tragically passed away at the hospital 'during Sunday, Kevin was lucid but very sleepy, giving a thumbs-up to his father before he left his bedside. At 3.30 p.m, just as the young SHO came to check on him, Kevin suffered a heart attack as his sister and I sat at the bedside. Sadly, attempts at resuscitation failed. Kevin had died right before my eyes.'
Margaret says 'Kevin's death certificate lists multi-organ failure, hypercalcaemia, and parathyroid tumour...but adverse events happen to real people. Kevin was more than a statistic, he was more than a medical condition. He was a real person, a young man, full of life but above all, he was my beautiful boy – handsome, strong and carefree...'. That was the end of Kevin’s patient journey, a journey which could and should have been much less prolonged, and with a happy ending if only the obvious had been properly flagged and appropriate interventions made during his various contacts with GPs and Consultants over the two years before he ended up in the hospital.
Even worse was the apparent lack of learning from the tragic events. Margaret recalls a chance meeting with the SHO, six weeks after Kevin’s death. 'He said “Kevin was very unlucky” – that was all he brought away from the tragedy. What a waste of an opportunity for learning and self-growth for that young man. The organisation took the easy way out and left him with a superficial perception of what had happened.'
This is despite the fact that the family have a special memory of that young SHO on the afternoon of Kevin’s death. As Margaret recounts '...Kevin’s friends started to arrive at the hospital – they were confused, bewildered and in a state of shock, many of them sitting on the hospital corridor floor with their backs to the wall, heads in hands. That SHO passed by, stopped, took off his white coat (the barrier), rolled it up, placed it on the ground and, saying nothing, he just sat with them – a most wonderful spontaneous demonstration of solidarity. He showed himself to be a decent, empathic and insightful young man. He deserved better than a superficial explanation.'
Margaret and her family were in shock and left with so many unanswered questions. 'Nothing or no one had prepared us for this – we had no warning, we never considered his life to be in danger and no one had intimated that this was the case. We had questions and we needed answers. How can a twenty-one year old young man be admitted to hospital on Thursday and die on Sunday? What went wrong? What we encountered was closing ranks, lame excuses, muddying the waters and protestations of loyalty to colleagues.' In the immediate aftermath of Kevin's death Margaret says '...there were initial honest and humane reactions from individuals, especially the nurse, for which I will always be grateful.' This was soon replaced by a process of damage limitation. One doctor described his dilemma as an issue of “loyalty to colleagues”.
Because their confidence in being able to find the truth through honest dialogue was shattered, Margaret and her husband were forced to go the litigation route. 'For ordinary people, like ourselves, it is a David and Goliath experience. Until the 11th hour every effort was made by the defendants to settle without admission of liability – a wearing-down strategy that lacks compassion and consideration for heart-broken people.' Still, Margaret and her family stuck with it. Almost five years later, they were vindicated in the High Court where medical experts stated (and the judge agreed) that Kevin's condition should have been clearly evident and, properly treated, '... Kevin would have had surgery to remove the over-active parathyroid gland. He would have been cured and would still have been alive today.”
There was a financial provision, but Margaret says '...monetary compensation was never an issue for us as a family... we donated the settlement figure to two charities.' Two GPs, a private consultant, a hospital consultant and a hospital all admitted liability. They expressed their regret at Kevin’s death and sympathised with the family. Sadly, this was done through legal representatives and not in person, something that would have provided credibility and acceptance of individual and corporate responsibility for the tragic outcome.
Margaret's call for open disclosure, her call for reporting and learning are all grounded in the fact that: 'I was present at Kevin's birth. I know every detail of that birth. I was also present when he died. As his mother, I needed and deserved to know everything relating to how that came about. Over and above that, it is essential that I be assured that lessons will be learned, that those lessons will be disseminated - all in the hope of preventing recurrence.'