MDS Community Conversations Advisory Team: Victor Fung, MBBS, PhD, FRACP; Kelvin Chou, MD, FAAN; Maria Stamelou, MD, PhD, FEAN; Catalina Cerquera-Cleves, MD; Oluwadamilola Ojo, MD; Woong-Woo Lee, MD
Prepared by Sarah Wahlstrom Helgren, PhD
Globally, all health professionals have been faced with a rapid pivot from in-person medicine to a telemedicine approach. In our first addition of MDS Community Conversations, Victor McConvey, Parkinson’s Clinical Nurse Consultant, shares with us his experience and learnings as a member of the Movement Disorders Allied Health Professionals community. In addition to this conversation, our Health Professionals Special Interest Group has prepared a globally relevant resource page.
For additional Telemedicine Resources, please see the step-by-step guide prepared by our Telemedicine Study Group.
Parkinson’s Victoria, Clinical Nurse Consultant
What is the biggest challenge of using telemedicine for movement disorder patients by allied health professionals right now?
McConvey: Telehealth had always been an element of practice in the service we deliver to people living with movement disorders (in Victoria Australia) It allowed patient living hundreds of miles away to access a service quickly and without having to travel. When the COVID 19 pandemic and restrictions started to impact we pivoted all our services to 100% telehealth and started video consultations to complement the phone consultations. The biggest challenge has been getting both the professionals and the patients familiar with using a different way of communicating and managing anxiety around this and the existential anxiety of living in an altered world. Reassuring people that you can’t break the internet and recognising frustrations has been key to keeping patients calm.
Telehealth has often meant that we have missed out on seeing the patient walk from the meeting room to clinic and observing when they aren’t aware of being observed, and those subtle signs of carer strain which may be identified in conversation. Not being able to physically touch someone has made assessing rigidity impossible and we have all had to become better at watching someone move and looking for fine motor changes.
Making telehealth effective has taken a multidisciplinary approach, to help, in guidance about what people should wear, how to establish a safe environment if we are going to ask them to move or exercise and optimise communication. Understanding that consultations often take longer, and we are all getting used to the technology has been a key way of supporting successful telehealth visits.
What kind of support are movement disorders patients in need of at this time?
McConvey: Reassurance and understanding! Most patients have an increased level of anxiety which is multifactorial. They are scared of contracting COVID 19, they are desperate to return to exercise groups and for a normalization of life, many relationships are strained as lives are lived in isolation, and many are deeply saddened that research toward better treatments and a cure has been suspended. Supporting our patients to use telehealth has been important, letting them know what to expect and how to prepare for their consultation has been important. Using tools such as wearing off and Non motor symptom questionnaires before the telehealth session have also helped to support an effective session.
What is the detriment to patients who are unable to be seen in the clinic by allied health professionals?
McConvey: We are so used to physically working with our patients, many of the assessments we are familiar with rely upon us touching someone, especially when it is our first encounter with a patient and use of telehealth still leaves us with some gaps in assessment.
The incidental communication does not occur as easily via telehealth, a patient mentioning that they think they see things occasionally or are voicing a concern about a coalescing impulse control disorder may result in a crisis which earlier identification could have mitigated.
Can telemedicine fill these gaps?
McConvey: We all need to get better at using telemedicine and grow our skills, which we are successfully doing the more we use it. Sharing practice tips, tools, and information about the various platforms available for telehealth is important in filling practice gaps.
A significant gap has been with our older patient group who do not have access to the internet. Using phone based consultations has been an essential skill to ensure continuity of care, for these patients who are often our most vulnerable.
Are there any positives that you weren’t expecting?
McConvey: It has increased access by removing the need for people to travel, this is a big positive and has enabled many people to participate in programs and in patient groups who previously would not have not been able to travel to a physical location.
Are neurologists still sending patients your way?
McConvey: Neurologists are still referring patients, and many have let us know that they still see Health care professionals as integral to supporting patients, and trust that we will be delivering effective care, even if it is using a different mode.
How are patient needs evolving over the course of the pandemic? What were their needs at the beginning vs. now?
McConvey: Initially patients became confused, all the world was changing rapidly, exercise and peer support groups were cancelled, and life contracted into a small space as we were all told to isolate. There were concerns about medication shortages which caused anxiety in Australia. The sudden dislocation from normal routines created a sense of bewilderment and anxiety which has slowly abated as a “new normal” emerged.
Like Health Care Professionals’ patients have started to learn new skills and how to navigate telehealth, many proficiently and many appreciating the ability to access a health care professional with out the need to attend an appointment.
Have allied health professionals been able to adapt? What tools have been specifically important?
McConvey: During this extraordinary time, Health care professionals have adapted and utilized what resources were available to adapt practice and provide ongoing care. The view it is “better to do something than nothing” has triumphed. For most of us we have been mindful to incorporate governance requirements, such as using a video consulting/telehealth platform which meets data-protection requirements into our practice.
A key driver of the rapid adaptation has been the willingness of colleagues to collaborate and share information and tips about how they have responded, with many local, regional and global communities of practice’s sharing and supporting each other.
Do you think you will continue to use telemedicine (or other new tools) in the post-COVID era?
McConvey: Without a doubt, the changes to clinical care delivery brought about by the response to COVID 19 have forced us to incorporate telehealth into our daily routines identifying the value of telehealth in clinical practice. While face to face consultation will always be essential the power and convenience that Telehealth affords both patients and professionals will see it become a permanent feature of our care into the future.
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