By Dr Peter Fletcher, Academic Director
Welcome to the 2019 edition of Moving On, the in-house on-line newsletter of our Parkinson’s Academy. Last year (December 2018) I opened with the line “Uncertainly reigns as the year draws to an end”. We may have had a general election but can anyone tell me where we are miraculously going to find 500 more GPs and thousands and thousands more nurses and allied health professionals? Meanwhile our patients continue to worry over the security of supply of their medication. Business as usual then.
Much of what I wanted to say about our MasterClasses and other educational offerings in 2019 was covered in our summer newsletter. Let’s look to the future.
Some years ago the British Geriatrics Society Movement Disorders Section (BGS MDS) proposed as a title for its annual essay competition, Parkinson’s disease in 2020. We are almost there!
The title was supposed to be slightly cryptic with 2020 also read as 20/20 (as in vision). But 20/20 is [only] normal vision and as we look forward we should think of vision as meaning something novel, imaginative and much more farsighted.
Every couple of years a group of our Faculty sits down with Sarah to review our MasterClass curricula in the context of what is happening in the world of movement disorders, the NHS and the world of clinical education. This year we did just that at the end of May.
Clearly there is much that we wish to retain. However as we move from paper to almost exclusively digital materials we will also move the presentation of some fact-based less contentious subject matter from being taught live, to being taught through the participants viewing recordings on-line before the MasterClass.
We are trying to create space within a time-defined programme and for 3 reasons. First new subject matter, for example the experiences of younger people with Pd and people with Pd in nursing homes. The second reason is that there is a frequent need flagged on the needs analysis which we have not adequately addressed, namely research.
Participants certainly want to know the results of the most recent research and indeed in the second module of the Advanced MasterClass we discuss research that is still at Phase II, work that is not quite at publication and examples of the sometimes off-the-wall (‘preliminary work’) abstracts popping up as posters at international conferences.
What participants want is a steer towards what might help them become research-active. This is not about gaining a higher degree or being a Principal Investigator necessarily (at least not at first). Clinicians know that their patients are keen to join research programmes so clinicians are keen to help close the gap between what is happening ‘up their’ and what goes on in the clinic. We have speakers who are and/or have been research active and can start to close that gap and as Emily Henderson puts it, through collaboration and team working. Sound familiar?
The third reason is that the between-module project work just gets better and better. This is in particular around service development, as research and audit become interwoven under the banner of quality improvement. We need to give more time to support participants in presenting this work. Moreover I want to see an unbroken transition of much of this work not just into practice and services but being submitted to the BGS MDS and other meetings as abstracts to inform a larger audience. In reality some projects might be considered at least in part research. Both Emily and Ed Richfield have pointed out that groups of participants could collaborate on shared projects. Back to collaboration and team working.
Meanwhile how many of you have current [research] Good Clinical Practice (GCP) training? (see: www.nihr.ac.uk/good-clinical-practice).
It’s a starting point and we will put the link on our website and in ‘suggested reading’. Moreover I am keen to see our speakers introducing a research ‘angle’ when they speak. What needs doing here and how can we inspire front line clinicians to ask the questions that need answering.
Meanwhile new therapies remain elusive. However in 2020 exenatide will move to phase III and Phase II trials of other existing licensed medications eg simvastatin and ambroxol will be published. More to come on terazosin and of course GDNF perhaps? Meanwhile we are keenly observing what is happening with disease modifying treatments and in particular various types of monoclonal antibodies in multiple sclerosis and Alzheimer’s disease. So targeting the immune system and activation of inflammation; is there anything here for Pd? I suspect 2020 will tell us whether there is (as in MS) or is not (results more mixed in Alzheimer’s disease).
So hold on tight, whether 2020 or 20/20 once Christmas and New Year have passed we are back on the runway, fully fuelled with all engines running. I just hope that 12 months from now in December 2020 I will not be writing “Uncertainly reigns as the year draws to an end”. Fingers crossed.
Have a happy, peaceful and relaxing Christmas and New Year.
Posted in: The Academy