Movers and Shakers: Bedside Manner
This week’s episode of the podcast about living with Parkinson’s is all about the subject that crops up time and again in our mailbag - the poor bedside manner of many doctors, particularly at the time of diagnosis. We start with some horror stories, which may make difficult listening for doctors, but we then hear from some excellent members of the medical profession with some ideas on how to improve matters.
Some of the stories we hear about cold, impersoal treatment in the ealy stages of Parkinson’s defy belief. A senior barrister, a very clever man, told me that when he asked a question during his second appointment about why his medication had been increased his eminent neurologist said first he did not have time to explain, and second the barrister would not understand anyway. Then there was the woman still waiting for a follow up appointment six months after initial diagnosis - very common - having been given no instructions on when to take her medication or that it should be taken on an empty stomach. She, like a number of others, said our podcast was a much better source of information than the medical professionals she had encountered.
We start with the Movers and Shakers sharing their own bad experiences. Judge (retired*) Mostyn relates how at diagnosis he was told it was “likely” that he would be in a wheelchair in five years. When asked “how likely” the innumerate neurologist said there was a 20% chance. The exasperated judge pointed out that added up to “unlikely” and got himself a new doctor.
Gillian Lacey-Solymar also sought a second opinon after an unsatisfactory appointment with a neurologist with a poor bedside manner. Ths second doctor “threw me out after 10 minutes, though she was very sweet. But after 10 minutes, she said ‘we have no more time,’ when I had loads of questions.”
What the Movers and Shakers have in common however is sharp elbows and we have mostly ended up with a pretty good standard of care. That does not appear to be the case for the majority of Parkies. Our first guest, Gillian’s current neurologist Professor Tom Warner, says that things have improved since he was a medical student with a good bedside manner now an important part of training programmes for young doctors:”But it's hard to teach empathy to people who aren't empathetic.”
He admits that care across the health service is patchy and says the crucial problem is time - the frequency and duration of appointments. He believes that an annual appointment with your neurologist is insufficient, especially if there has been a change in medication, and a first diagnosis meeting should last at least 30 minutes.
The trouble is that we just don’t have enough neurologists, with far fewer than in much of western Europe: “Take Norway -they have one neurologist for 14,000 population. In the UK it's one per 97,000 population.” That is not going to change in a hurry but Professor Warner does see scope for a broader spectrum of care with patients given access to Parkinson’s nurses, physiotherapists and dietitians.
Our second guest Dr Ed Newman from the University if Glasgow is, as well as being a top neurologist, closely involved in training medical students. He says there is a great emphasis on empathy: “The students get to meet patients very early on, they get taught that the most important thing that we do is learn how to take a history from a patient. So just learn how to actively listen to the symptoms that they're telling you. And then as they progress through the years of the medical school, they get more increasingly complex scenarios to do such as breaking bad news.”
We end by meeting a medical student just three years into his training. Oscar was inspired to go into medicine by having a mother with Parkinson’s and having himself been in and out of hospital as a child: “I saw just how much of an impact a good doctor or a bad doctor can make on your life. So I thought that if in any way I can go into it and make some people's lives better, that is definitely something I should do.”
He says older generations of doctors had a more “stiff upper lip” approach to medicine and he hopes his generation, more used to talking about their feelings, can offer a more holistic approach to patients.
The aspiring doctor’s full name is Oscar Lacey-Solymar and I hope his mum is very proud of him.
*By the way our friend Judge Sir Nicholas Mostyn retired this week and was given an amazing send-off in a courtroom at the Royal Courts of Justice packed with judges and presided over by the new Lady Chief Justice. Mark Mardell has written a brilliant account of the event on the Movers and Shakers Facebook page.
Please let us know what you think of the podcast - email us at feedback@moversandshakerspodcast.com
I would love to read Mark's account of the Judge's retirement - but I'm not on Facebook. Could it be reproduced here??
On the subject of PD nurses, my Parkie husband and I recently took part in a PD UK organised PD Excellency network conference. We were there to tell the healthcare professionals present how important getting involved in a research interest group has been for us. While there I heard that there is one member of staff at Parkinson’s UK in London who is currently working full time on a UK wide survey of the number and workload/work pattern of PD nurses in all NHS regions. The charity will be using the results of this survey to identify the areas with highest need for immediate increase in the number of nurses - good news for all of us, my 84 year old dad who’s PD is quite advanced now and he has seen his PD nurse once in 7 years. At the excellency conference we heard some wonderful accounts of multidisciplinary clinics where newly diagnosed patients have an appointment after diagnosis and see the PD nurse, a physio, an occupational therapist (for practical aids etc) and a speech therapist - how fantastic is that! Going forwards they see the PD nurse alongside their consultant allowing the nurse to follow up any of the questions/concerns arising during the consultation.