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Path to diagnosis of Parkinson’s disease
The process of managing the diagnosis and treatment of illness in the NHS has always been divided between the primary care team (the GP) and...
It is very hard to imagine what it would be like to be told that you are suffering from a condition which, so far it may have little impact on your life, is going to be there for life and may drastically affect the quality of your future.
Anyone reading this account of patients’ experiences of receiving their diagnosis may feel annoyed that the doctor giving the diagnosis did not do more to comfort, inform or generally reassure them about the future. Maybe they did. But for the person being told the diagnosis the memory of it includes their initial impression and the information that they went on to uncover about what someone describes as their ‘unwelcome guest’.
The doctor may have had to break such news many times before, but it may still be something which is not easy to do right. Some people mentioned how difficult it must be for a doctor to deliver such a ‘daunting’ sentence.
Many people we talked to felt that their diagnosis had been delivered quite brutally, that the significance of what they were being told had not been made clear.
Tom complained about the use of long words like idiopathic, substantia nigra and cogwheel rigidity. Others supposed, hearing the word disease, that this was a fatal illness, even that they might not have long to live.
Certain things said in Gaynor’s first consultation stuck in her mind – ‘You and I are going to get to know each other well over the next few years if we don’t fall out or you don’t move’; and to ‘explain’ why she should have developed Parkinson’s disease that it was ‘the way the dice has fallen’. Her doctor also advised her to join the Parkinson’s UK.
When Rachel was told when she was 71 that she had mild early Parkinson’s disease she was advised ‘to regard it as a nuisance and not a tragedy,’ which she thought was a very good piece of advice.
But for many people the news came as a complete surprise, producing stunned disbelief.
One reason for refusing to accept the diagnosis was a belief that Parkinson’s disease affected only old people. Also their symptoms were at this point a long way from the image they had of people with the condition.
Some people refused to believe that such a diagnosis could apply to them because they had always been so fit and healthy. In the case of two people who had been enthusiastic runners, their running may have helped the early discovery of their disease, as their first symptoms were problems with running.
“I walked out of his office and I was sort of stood in this massive corridor in an old Victorian building and there was not a soul in sight and nobody to talk to and nowhere to go. And I just had to walk home on my own with this in my head until I got home.” David.
The process of managing the diagnosis and treatment of illness in the NHS has always been divided between the primary care team (the GP) and...
After learning their diagnosis, people had to decide who else to tell and how to tell them. Some people told others straight away, others did...