MBE Alistair Newton
Advisor Dystonia Europe
A local medical school
In my home town, St Andrews in Scotland, we have an ancient university with a fine medical school. A few years ago, the tutors created a Patient Partnership group, inviting local people with several different types of illness, to meet students in special tutorial sessions.
These sessions are based on questions from the students about the patient and his/her symptoms, family health history, lifestyle, etc. There is no physical examination and the tutorials have continued by Zoom during the Covid 19 pandemic.
Students are very interested to meet patients, of course, especially when they discover that the medical condition is unusual and has interesting features, such as the many different types. https://dystonia-europe.org/about-dystonia/types/ .
How this can promote interest in dystonia
A consultation with a patient is often an opportunity for the doctor to learn about an unusual illness, which they may not have seen before. Yes – like dystonia! And the bizarre symptoms of dystonia attract the attention of intelligent and interested young people like medical students. They will also remember the symptoms if they see them again!
So – a tutorial can help the students to learn how to deal with patients in the clinic, but it is also an opportunity for the patient to help a group of young trainee doctors to learn and remember a few basic points about dystonia……. It means that more young people in the medical profession will hear about dystonia, actually talk to a dystonia patient and see the symptoms.
Then there is a greater chance that more new dystonia patients in the future will receive a faster diagnosis and better treatment.
Other interesting aspects the patient could mention, such as:
– The ‘geste antagoniste’ or ‘antagonistic gesture’ in cervical dystonia – where, by touching the chin or some other point on the head or neck, the
dystonic movements will reduce or even stop temorarily. https://pubmed.ncbi.nlm.nih.gov/11499637/
Holding a pen or pencil in the hand can sometimes have a similar effect in hand dystonia/writer’s cramp. Singing or humming a tune has also been shown to reduce or even stop symptoms temporarily for some patients, in some types of the illness. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4747630/
Background information about the illness
The students usually ask for more detail about the illness, such as cause, symptoms and treatments. https://dystonia-europe.org/about-dystonia/treatments-dystonia/ It is useful if the patient can provide some general background information for this little-known illness, but not too much detail. For example: Studies suggest that more than 500,000 people in Europe have some form of dystonia.
Researchers believe dystonia results from an abnormality in or damage to the basal ganglia or other brain regions that control movement.
In most cases, the cause is unclear. Cervical dystonia is the most common type. Genetic links have been identified for some, but not all types of dystonia.
The response of the students and tutors
Students and tutors respond positively, and tutors (many of whom are local doctors or researchers) say that this is new information for them.
Many medical schools in Europe already have tutorial programmes like the one in St Andrews. If you feel that you are able to help students in this way, you can contact your local medical school and ask them if they have a similar programme.