Delivering the PD Diagnosis: 76% Received No Training on How to Tell People
I have just finished reading a new study from France (University of Toulouse) published in July 2024, detailing the perspectives of patients, primary carers, and health care professionals on the “Parkinson’s Disease Diagnosis Impact,” i.e., delivering the news.
I was not surprised by the findings, but one statistic screamed out at me, despite not actually being surprised by the result: Of the 120 health care professionals taking part in the study, 76% answered that they had not “received any specific training on the announcement of Parkinson’s disease diagnosis and the possible reactions of patients following the announcement.”
This is a population in which the vast majority of those surveyed—81%—had delivered the news more than five times, and 33% more than 20 times.
I have heard from many fellow patients, and I know for myself, how pivotal the meeting is and how it sets the scene for the future journey. It seems to me that this key moment should come with some degree of training or awareness on how to deliver the message, what to say, how to deal with the likely response, and how to summarize and help the patient and caregiver move forward with the next steps. (It is worth noting that 80% of patients remember receiving no leaflets or paper documents).
I am not suggesting additional time be given, as I know how little time doctors have, but to have no training seems to me such an opportunity for improving the initial setup for the patient—to guide them towards source material, to show them where to go next, and to make sure they have a phone number or email to contact.
I look back at the moment I was given the news. It was a real shock, done without my wife present (my son was with me), and I was given no material or outline of next steps. This is in no way a criticism of the medical team, as I was actually hospitalized at the time and had been in for eight days or so and was desperate for information.
I think this is something that seems to be an obvious win/win. A guide, protocol, or training course on how to handle a patient would make life easier for both the medical team and the patient and would help the smooth flow of the patient into the treatment protocol and world of PD.
That’s my thought, and I’d love to hear other people’s ideas. Some may say that I am being too soft/cuddly but this I think should and could be addressed so quickly. As a partner of a consulting firm, this seems to me something that would be considered a ‘quick win’.
Couldn’t we make a change on this one small aspect of the journey? Thoughts? Suggestions?
2 Responses
Hi
I was diagnosed 12 years ago when I was 48. I received the same awful experience at diagnosis.
In 2024 I worked with Parkinson’s UK to try to address this.
We now have in place in Kent and East Sussex a system whereby a PUK nominated volunteer supplies the Parkinson’s nurse in their region, with the newly diagnosed packs and keeps a check on stock. The neuro physios and the neurologists secretaries also have a supply.
We are also working on including a link to the PUK newly diagnosed information in the clinic letter following the diagnosis appointment.
I agree with your request for the healthcare professionals to be trained in how to deliver the news to the patients.
In reality I think this could happen but it will take a while. PUK have recently made 6 x 15 minute videos called Parkinson’s Essentials to train healthcare workers in their individual roles.
In the meantime if we can ensure that the newly diagnosed packs are handed out at point of diagnosis then that will be a start.
thank you for this very useful insight and thanks for your work on it