I am a Writer for ‘Parkinson’s Road’ global support community.
One of the subjects that people with Parkinson’s have both experience of and opinion about is that of side effects caused by medication. The possible side effects of short and long-term medication use are well listed within the information leaflets found within medication packs. Side effects are also well listed and, more importantly, described on the web site of most leading Parkinson’s charities, nationally, around the world.
What I hear from fellow people with Parkinson’s, however, is that their medical support teams rarely discuss the subject of potential side effects within treatment review meetings.
What treatment/progress reviews are offered to a person with Parkinson’s?
Following diagnosis, the decision to begin taking medication is, for many, life changing and quite daunting. There is a realisation that doses of medication will have to be taken at various intervals each and every day, for the rest of life. This almost always involves numerous medications at each dosage time.
The medical teams, led by either a Neurologist or Movement Disorder Specialist, will usually take great care in assessing their patient through a combination of physical examination/observation, questioning and anecdotal evidence provided by their patient. These activities, alone, usually take up the 15-30 minute appointment that the person with Parkinson’s is offered for treatment/progress/diagnosis review.
In the UK, clinical governance around the diagnosis and treatment for people with Parkinson’s is provided by:
- In England, Wales and Northern Ireland, by The National Institute of Health and Care Excellence (NICE).
- In Scotland, by The Scottish Intercollegiate Guideline Network (SIGN).
Here is an excerpt on this subject, by Parkinson’s UK (Support Guidelines):
“Parkinson’s guideline recommendations
NICE has identified the recommendations below as priorities.
Referral to an expert for an accurate diagnosis
People with suspected Parkinson’s should be referred without delay and untreated to a specialist with expertise in the differential diagnosis of the condition.
The diagnosis of Parkinson’s should be reviewed regularly (every 6 to 12 months).
Personalised care and treatment
A person with Parkinson’s should have the opportunity to discuss their individual circumstances including symptoms, preferences and goals before starting any treatment.”
It is highly likely that the Parkinson’s specialist, conducting the regular reviews, will be assessing for any potential for medication side effects to be manifesting, but people with Parkinson’s commonly describe being uncertain about which of their symptoms are the disease and which are medication side effects. This has certainly been something that members of Parkinson’s Road global support community (find us on Facebook) bring to my attention and does not seem to be limited to any particular country, in terms of local practices. It seems to be a global perception by people with Parkinson’s; though this perception would need to be researched and scientifically measured, if not already done.
What needs to be done?
My concern, for my fellow community of people with Parkinson’s, myself included, is that there seems to be a common consensus that, where medication side effects are concerned, people with Parkinson’s who are taking prescribed medication, need:
- Greater education about potential side effects, prior to the commencement of our prescribing regimen.
- That such education would be provided not just in literature/handouts or online but through repeated in-person discussion/teaching.
- That pre-designed self-monitoring tools are provided so that each patient is taught how to self-monitor for symptom change/development.
- That patients are taught how to explore and evaluate their treatment options; for example, how to evaluate the choice between medication and a potential/manifesting side effect vs living with the disease symptom untreated or treated by a alternative medication/therapy.
Parkinson’s knows no borders:
People with Parkinson’s are forming global support communities, online. Our experience is a shared one and we are not divided by borders, any more than the disease itself is.
Those responsible for Clinical Governance would ideally do better to serve people with Parkinson’s, by creating a universal approach to diagnosing and treating the disease, to designing the prescribing regimen, educational support and self-help tools (some of which I have described above) for all people with Parkinson’s.
My closest friends with Parkinson’s are in the UK, USA and Canada and we run a global support community called Parkinson’s Road; a Facebook located support community which knows no geographical border. We are one community.
If you are a person with Parkinson’s, please speak up about your concerns or questions regarding medication side effects, at your regular treatment reviews.
(C) Dean Parsons. March 2018.