Without any doubt, COVID-19 has changed the way we do almost everything in our daily lives. Around the world people are adapting and learning new ways of staying connected, working, teaching and even shopping. For those living with a chronic or long-term disease like MS, they’ve had to adapt more than most, as the healthcare landscape becomes almost unrecognisable.
Since Coronavirus became part of life, telemedicine has transformed MS healthcare provision, with many appointments now taking place virtually. Healthcare providers have had to quickly adapt to this new technology, embracing a combination of phone calls, video calls and app platforms. Telemedicine has proved particularly helpful in assessing those who need to be seen immediately, whilst avoiding unnecessary exposure to COVID-19 in emergency rooms for those who don’t.
Of course, telemedicine cannot replace MRIs or physical neurological assessments, but can it offer a more seamless way of managing routine appointments? Or will it cause more issues than is solves?
We asked four of our patient advisors at MS One to One to give us an insight into their experience of virtual appointments during the COVID-19 pandemic, focusing on the positives, negatives and how they prepare for their own virtual appointments.
Barbara has been living with MS for eight years. Here’s how she’s found care in the time of Covid-19.
“Considering most of my MS support comes from online forums, Zoom groups, Twitter and blogs, I feel quite comfortable embracing the idea of virtual healthcare, to a point. But over the last few months I’ve had both positive and negative experiences with such appointments.
The first positive one was the follow-up to a blood test I had. Pre-pandemic, I would have waited a week for the results, then potentially months for a referral. However, my GP called the day after, had a chat about the results and she promised to email the hospital rather than write a referral. The very next day, she’d already spoken at length with the specialist and relayed the information to me in a clear, precise manner. Within the comfort of my own home the matter was resolved within 48 hours. Compare this to hospital trips, the endless waiting and the days off work, it was perfect, and my mind was at rest.”
“However, on another occasion, I was concerned about a dramatic flare-up and I left a message for an MS nurse to call me back. Unfortunately, I was called by someone I hadn’t met before and with a large case file as most of us with MS accrue over the years, it was difficult to explain exactly why I was concerned. We both ended up frustrated and her advice was of little help. Perhaps a face-to-face video call would have worked better on this occasion as I could have easily shown her my symptoms.
None the less I prepared for both appointments in the same way I would do for physical appointments, with questions and symptoms jotted down and all my previous medical papers to hand. Something which I find essential to do, whatever the format of the appointment.”
Whilst Jacobo embraces the need to adapt, he finds many aspects of virtual care frustrating.
“In my case, throughout the pandemic I have continued to do the things essential for my wellbeing, such as physiotherapy. I have learnt to do these sessions through videoconference with a professional, which whilst effective and convenient - as I haven’t had to leave my home - it has felt a little weird doing them on my own! I’ve also found it frustrating that I had to delay a blood test by two months due to the pandemic, and even though I’ve received my results, I’m still waiting to hear from the doctor with regards the next steps. So, all in all I’m finding that despite these new systems being in place, there is still a lack of communication.”
Birgit discusses one of the most important needs of the MS community. The need to talk.
“Being able to talk with the doctor, to ask questions, to keep informed and to discuss our needs is vitally important. It’s all about maintaining a good patient/doctor relationship in order to keep adherent and safe in uncertain times. Therefore, I feel virtual online consultations with the doctor are greatly needed and very beneficial on a number of levels. It reduces face-to-face contact and also the risk of infection. It helps patients stay informed and gives them the chance to ask any questions they might have. It helps keep prescriptions on track. It saves time and energy having to get to the surgery and wait around for your appointment.”
“Of course, online consultations are not the universal remedy. Not every test can be done online. You can’t test reflexes or take blood for example. But all in all, they are a great option which if we prepare for ahead of time, have the potential to keep us connected with our medical team on a level we haven’t seen before.”
Joao leaves us with some excellent tips on how to be prepared for telemedicine; if and when you need to use it.
Call your doctor’s office, or hospital, to get a better understanding of how telemedicine works at their clinic. Staff can usually take you through the steps of creating an account and logging into the patient portal you’ll be using.
Familiarise yourself with the device you’ll be using (phone, tablet, or computer) before your virtual appointment. Seek help from a family member or friend if you need additional support.
Ask questions and advocate for yourself. Telemedicine visits are new to a lot of people, and it is okay to not know everything.
If you do not have access to digital devices or the internet, it’s important to make your healthcare providers aware so that they identify and overcome foreseeable challenges.
To conclude, I’m willing and able to embrace telemedicine or virtual appointments, it’s safe, less stressful and can provide more proximity with HCPs. Remember, it’s going to be all right! Stay safe at home. There is always someone here to help you.
Whether you find telemedicine more convenient or less, one thing is for sure, it’s here for the foreseeable future. In fact, a recent Ipsos survey found that 54% of HCP appointments and 75% of MS Nurse appointments have been conducted virtually since lockdown measures. Whilst 80% of respondents were mostly satisfied with their virtual consultations with their HCPs during the pandemic 59% of HCPs said they preferred personal interaction with their patients.
By continuing to prepare for every virtual appointment, by asking questions and making the necessary calls, you can continue to get the essential care you need, when you need it.
For extra support and advice on having the right conversations with your Doctor, download our Talk to Your Doctor Guide. Now more than ever, it’s vital to keep all lines of communication open.