Here at King’s College London we host a research advisory group, the Stroke Research Patients and Family Group. This group meets every six weeks and we invite researchers and stroke patients to discuss stroke research. One of our longest standing members has written a short story about the experience of stroke and being a member of this group.
PATIENT INVOLVEMENT: TOO MUCH TO ASK ?
There is an essence driving the human body, some thing that makes it more than the sum of just its physical parts.
However, as the ‘e-world’ has expanded through the 21st century, there has been an ever-growing trend to reduce humans to a cluster of tick boxes. We have been transformed into a software package containing an infinite number of permutations awaiting exploration. The health worker can select the cluster of deficient or corrupted functions, ticking the boxes relevant to the existing problem, and presto! up pops a window on the screen of the e-device, listing actions for resolving the matter: ‘Ah, I’ve assessed that the fault is the result of (blah). I will locate the patch, check for updates. After installing, all will be right again:
Fix malware: Stroke Event version 2016. Select patch: medication A, B and C. Updates should include: indicated physiotherapy; changes in diet; adjustments to lifestyle. Also available in pdf: leaflets outlining the what/ how/ why of Stroke Event….. Next please!’
Away hobbles the person who unwisely or inadvertently downloaded the malware.
Never mind that the patch itself may require further patches (side effects). Never mind that the leaflets use medical terms unknown to the reader, or give inadequate or over-simplified explanations that result in more questions. Never mind that although the ‘fixes’ might well contribute to improvement…the stark reality for that individual is this:
Following the downloading of Stroke Event version 2016, for days/ weeks/ months/ years that person confronts the consequences of that malware: constant reminders, adjustments and challenges. How best to deal with the now-obligatory replacement Operating System: New Normal version Rest of Life…?
Oh dear, this new techie stuff is like science fiction to someone like me. But I’ll try to have a go: Perhaps an online search will produce other options to consider? Hmmm, this entry on the results looks interesting: the South London Stroke Register….
Those of us who consented to having our names added to the South London Stroke Register are regularly interviewed on a long-term follow-up basis. This detailed collection of data is then used for research purposes by a wide variety of individuals working from different perspectives. It also has great value for devising the patches and updates necessary for addressing the effects of the malware. Our participation in this process is our legacy, our contribution towards better understanding the bigger pictures of treatment, care and management of the event….
Many of us also choose to attend regular meetings of the Stroke Research Patients and Family Group. We can interact with others who know, who understand, the reality of living with the New Normal. We exchange experiences, discuss solutions, share information.
The atmosphere of the meetings is welcoming and comfortable. We don’t feel self-conscious about using a walking stick; or speaking in a different way; or pausing at length to locate an elusive word to continue a remark; or slopping our drink as we raise it to our lips: each of us has succumbed to similar malware. We feel at ease with one another, bonded by our shared experience.
We know that we have ‘permission’ to interact with the guest speaker, to ask questions, raise points: we have been given a Voice.
These speakers come to tell us about research projects, active or pending. As well as being informative, this also creates the opportunity for any of us to participate in some additional way: share an experience, complete a questionnaire, or participate in the speaker’s research study.
Other speakers come seeking our feedback, our input about creating a document: points to include or exclude, terms suited to the lay person, contents that are clear and easily understood.
For those who have memory problems (and who are often grateful for printed handouts from the speaker!), and for those whose level of concentration can vary, the SLSR thoughtfully posts Minutes to those who attended the meeting, highlighting topics covered and providing contact details for the guest speakers.
The SLSR produces a twice-yearly newsletter, ‘Forward’. Its features are interesting and thought-provoking. Here also we have a Voice, as we are given the opportunity to submit articles for inclusion in the newsletter.
The energies of the SLSR and its Group meetings have resulted in creating a community: one that gains the opportunity to learn about research and projects; that gives feedback/input about creating information for lay people; one that is listened to, heard and acted upon. Our community has a Voice.
We -the Patient Participants- are the ‘essence’ that is absent from the current software programs….
What an excellent option to find on my web search results!
Final task: compose Outgoing email.
To: Health Workers, All Sectors
Subject: Update Urgently Required
Contents (mirroring a recent tv advert) :
We live the malware. You do not. You need HELP!
(press): Send All