Tuesday, January 16, 2007
By ISLA WHITCROFT
A father's 11-year nightmare struggle to be diagnosed with MS has exposed the scandal of how consultants withhold bad news:
On a cold December night, PC Gary Dimmock finished his shift and drove to Beachy Head. He had often spent time talking people out of jumping from the notorious suicide spot, but this time he wasn't there to save anyone - he was thinking of taking his own life.
'It would have been the end to all my problems,' says Gary, 42. For ten years, he had suffered from a range of debilitating symptoms that left him barely able to function.
Despite this, his GP and a number of specialists refused to acknowledge there was anything seriously wrong with him - one even accused him of making it all up.
'In the early stages, it had been easy to dismiss each symptom as bad luck, but by that night in 2002, I was in a terrible state,' says Gary.
'I was dropping things and dragging my feet. I suffered from dizziness and double Ovision, as well as agonising pins and needles in my legs. Sometimes they went numb and occasionally when I got out of bed I would collapse in a heap.'
He'd also suffered chronic urinary infections and was losing weight rapidly - in one month alone, he lost two stone, despite eating up to 5,000 calories a day. 'I was so tired I could easily have slept for 24 hours at a time,' he recalls.
'I was too exhausted to give my best at work - and once or twice even fell asleep when parked in a police car. My colleagues commented on how gaunt and ill I looked. I was starting to take time offsick and though my bosses were supportive, I felt guilty.'
Gary was often too unwell to play with his toddler son, Kian, while his tiredness, irritability and worry about his health was putting a strain on his marriage to Lisa, now 41.
In an increasingly desperate search for a diagnosis, Gary consulted his GP, a consultant neurologist and three consultant ophthalmologists. All insisted his symptoms weren't linked and there was nothing seriously wrong with him. Gary and Lisa, a former WPC, then turned to the internet, where they dis-covered he had the classic symptoms of multiple sclerosis.
'But when I raised the issue of MS with a GP locum in early December 2002, he called me a cyberchondriac - someone who uses the internet to misdiagnose themselves. I left feeling as if I had a psychological problem,' says Gary.
'By the time I drove to Beachy Head, I was worn down. No one seemed to believe me and I even began to wonder if I was subconsciously malingering or going mad. But as I sat in my car, I saw sense. I thought of my children: Sophie, then 12, and Kian. They needed their dad - whatever physical state he was in.
'I know from my job how much collateral damage suicide can inflict - I simply wasn't prepared to do that to my family. So I turned the car around and went home, determined to get to the bottom of what was wrong with me.'
As Gary and Lisa had suspected, he was suffering from the neurological disease MS, which affects around 85,000 people in Britain. It is caused by damage to myelin, the protective sheath that surrounds the nerves which make up the central nervous system. Messages between the brain and the body become scrambled, resulting in a variety of physiological symptoms.
For the 11 years from 1992 to 2003 that Gary went undiagnosed, it is clear from his medical notes that the doctors who investigated his recurring symptoms had strong suspicions he had MS, but decided not to tell him. Nor did any of them recommend he had the final tests - an MRI scan and lumbar puncture - which would confirm the diagnosis.
This delay not only caused him great mental distress, it meant he was unable to take medication which could have alleviated or slowed down his symptoms. It's not only a story of personal anguish, but one which highlights an extraordinary anomaly - that at a time when we talk of patients' rights and openness, doctors are still able to withhold vital information.
As far back as 1992, Gary's GP had written 'impression MS?' on his notes. Three years later, in a letter to the GP, a neurologist suggested Gary could be in the early stages of demylenation - this refers to the destruction of the myelin sheath around the nerves, indicative of MS. In the same letter, the neurologist says that if more symptoms occurred, then Gary should be investigated more fully for MS - something that didn't happen until 2003.
In 1997, an ophthalmic surgeon, who had seen Gary after yet another episode of double vision, wrote to the GP saying the most likely underlying diagnosis was 'disseminated sclerosis'. From 1992 until Gary's diagnosis in 2003, the correspondence between various doctors is littered with similar references to the first stages of MS.
In some letters, some of the specialists express a reluctance to carry out an MRI scan because they would then, as one wrote, be 'duty bound to confess the diagnosis'.
By 2003, yet another ophthalmic surgeon wrote to the neurologist high-lighting his suspicion that Gary had MS.
The specialist wrote back saying he considered it very likely that Gary was suffering from the condition, but because no conversation about the subject had taken place between him and the patient, he had 'left it unsaid'.
Gary saw three types of specialists, some up to ten times, but all seemed oblivious to the suffering their silence was causing him.
And as well as keeping him in the dark about his probable diagnosis, they continued to treat each symptom individually.
Gary had to undergo a series of unnecessary and often unpleasant tests, including rectal examinations for prostate cancer and barium meal X-rays for irritable bowel syndrome. The tests came back negative.
By June 2003, Gary's symptoms had worsened: he was exhausted, tormented by pins and needles and worried whether he was going to wake up in the morning with double vision, a dragging foot or both. His GP made yet another appointment with a neurologist, who finally referred Gary for an MRI scan.
'The neurologist said he thought it was about time we found out what was going on and I just accepted this because I had been told so many times there was nothing wrong,' says Gary.
After a lumbar puncture, Gary and Lisa were finally told that he did, indeed, have MS. 'Though it was obviously devastating and frightening, it was also a relief,' says Gary.
'It meant I wasn't going mad and that at last I knew what I was dealing with and could start to help myself.
'For the first time in years, I felt in control of my body and health. It meant that Lisa and I could start to plan our future together as a family dealing with a problem.
'She has said that from that day on, my personality changed and I became happier - more like the old Gary I was before I became ill.'
When, a few weeks later, Gary confronted his neurologist with the fact the specialist had known all along that about the illness, the response was unequivocal: 'I didn't lie to you. I just didn't tell you the truth.'
Gary and his wife were stunned. 'Lisa asked him to repeat what he had said,' he says.
'I felt like punching him - and I am not a man who agrees with violence. There was a long silence and then, hand in hand, Lisa and I walked out of the room and out of the hospital.'
The consultants' actions may seem extraordinary, but they can be explained by the little-known Therapeutic Privilege. This is a legal phrase used to describe the action of withholding medical information from a patient.
'Until recently, it was relatively common for doctors to withhold vital information from patients,' says Dr Daniel Sokol, a medical ethicist at Keele University.
'It was partly a cultural issue - the notion of paternal benevolence was rife among many doctors and patients - but it also had a practical basis.
'In the past, cancer, for example, was pretty much a death sentence, so doctors often worked hard to keep the news from their patients for as long as possible.
'But over the past 40 years, as survival rates from cancer increased and treatments became available, oncologists began to follow a policy of openness.
'Though they will be careful about how and when they disclose information, they pretty much tell you the truth as they go along.
'Now "non-disclosure" is more of an issue with neurological disorders such as MS because these are the diseases which are hardest to diagnose and carry devastating long-term consequences.'
It is true MS can be difficult to identify because it has symptoms in common with other conditions, and there is no single test that gives a cast-iron diagnosis.
'The official advice is that someone should be told as soon as a diagnosis of MS is considered reasonably likely - unless there are overwhelming patient-centred reasons for not doing so,' says Dr Lee Dunster, head of research at the MS Society.
'While there are patients who say they are grateful they weren't told immediately, the majority seem to favour being told as early as possible, so they can take decisions about lifestyle changes and therapies they might try.'
The British Medical Association advises its members not to with-hold information from patients.
'We encourage them to be active partners in decision making. If patients are not given sufficient and relevant information about their condition, the validity of their consent to any treatment is questionable,' says a spokesman.
According to Sharon Burton, senior policy adviser on ethics for the General Medical Council, there are only rare occasions when it would be appropriate to withhold vital information from a patient.
'This would be when the patient was clearly not in a fit emotional or mental state to be able to assimilate and deal with the information,' she says.
'In this case, the doctor should work with the carer or relative to find the best time to break the news to the patient.'
Crucially, Sharon points out that this situation should not be considered a long-term measure.
'Withholding information for the right reasons has a legal and ethical basis in very exceptional circumstances and not over one, two or more years.'
Last week, Gary Dimmock won a £10,000 out-of-court settlement against the East Sussex Hospital Trust. It has apologised for 'not sharing with him at an earlier stage that his symptoms may be attributable to multiple sclerosis'.
As part of the preparation for the legal case, Gary was given his medical notes.
'By the time I finished reading them, tears were running down my cheeks. There in front of me was 11 years of suffering, all the needless and unpleasant investigations I went through and the anxiety and worry I and my family suffered. I was sad and also very angry.
'If I had known about the MS earlier, then I would have done things very differently. Before 2000, we only had a daughter. Though I love my son to death and would never be without him, if I had known I had such a serious, life-changing ill-ness, we might have chosen not to have another child.
'My illness has moved on from the relapse/ remittance stage to the progressive stage. Though I am relatively well now, things could change tomorrow. So who knows what kind of father I will be in the next few years?
'In addition, we moved house and took on a much bigger mortgage. As the breadwinner of the family, I have no idea how much longer I will be able to pay it, so that is another worry.
'Perhaps most importantly, I would have approached my health differently. I would have started a regime of treatment which might have alleviated my symptoms.
'The first thing I did when I heard I had MS was to tell my boss, who was brilliant. He took me straight offshift work, which has greatly reduced my fatigue levels.
'This meant I was able to start a regime of gentle exercise, which is an important part of my treatment. Now I know what I am dealing with, I am far more positive and less irritable, which in turn means a happier home life.'
Gary is under the care of a new consultant who is very open - but he still finds it hard to trust him.
'Those doctors made a decision to deceive me and their decision put me and my family through hell,' he says. 'They didn't trust me to deal with my own health properly. It will take me a long time before I can trust doctors.'
Since the news of his settlement, Gary's solicitor, Gillian Solly, of Russell Jones & Walker, has received numerous calls from MS sufferers around the country who have struggled to get a diagnosis.
'I am not able to say that the practice of withholding medical information is commonplace, but there is certainly a need to get a debate going around the issue,' says Gillian.
'I don't believe that guidelines are the answer. Doctors should admit it goes on and start to talk openly about it so that everyone - including the patient - knows where they stand.'
As Gary puts it: 'In this day and age of medical awareness and diagnostic medicine, there is no reason why people shouldn't be told the truth as soon as possible.
'No one has the right to deceive you, especially about something as important as your health.'
Gary Dimmock is raising funds to pay for a mini-bus for the Eastbourne MS Society. To make a donation, call Freephone 0800 100 133. For more information about multiple sclerosis, contact www.mssociety.org.u