Personal Insight: Exploring how COVID-19 has impacted my MS care and support
By Barbara Stensland
MS can be isolating at the best of times, so during a global pandemic we could have been pushed to the limit. And yet as the world shut down, it also gathered together.
My routine MS appointments were transferred to telecare and I had much more contact with my GP than previously as many of the MS team to whom I would normally turn had been redeployed elsewhere within the NHS. Having known my GP for several years, telecare was a positive experience for me as my doctor was aware of my medical history. I was able to speak openly with him and at no time did I feel rushed. In fact, at the end of the consultation he asked about my studies and recommended several books he thought could be useful, an unexpected bonus.
In addition, as a working person with MS it was an ideal way to factor in an appointment which would normally necessitate at least half a day off work. Before the pandemic, I often requested a call-back rather than take up a valuable appointment as I knew the issue could be easily resolved over the phone within minutes.
Blood tests were swiftly organised and the results relayed back to me quicker than normal, prescriptions were sent remotely to the local pharmacist and delivered to my house, rather than finding time (and energy) to pick them up from the surgery and then handing in at the pharmacy. This speed was no doubt due to a reduced number of patients visiting the surgery and possibly more patients were also presenting at pharmacies and dealing with minor issues in a way GPs have been advocating for years.
A yearly consultation with my neurologist has been rescheduled as a telecare appointment in October and for now, that should work. I am sure that if he felt there was a need for a further physical examination or tests, this would be arranged.
MS charities released incredibly detailed and always up-to-date information, responding to a rapidly evolving situation. They covered not only the virus itself and our risks with possibly compromised immune systems, but also employment rights, benefits, mental health and how to stay connected during such an uncertain time. Not only that, one had an MS nurse on call, available to answer pressing medical queries.
"For many of us, social groups where we can get together for a coffee, or a yoga session are vital in maintaining community links."
Again, MS charities came to the fore and quickly set up online sessions offering everything from mindfulness, general chat and even book binding. I took part in one of the chat groups and found it such a relief to talk with other people with MS during this strange time. I spoke to the organiser afterwards and offered to run a couple of creative writing courses online – it was great to use my skills to connect and encourage people to discover their unique talents.
I have also noticed an increase in Twitter queries from other people with MS, reaching out, asking questions they may have waited to ask their MS team. It’s heartening to see so many tweeters reply to them, sharing their own experiences and highlighting other sources of information. Knowing others have been through the same is reassuring and I remember this well from using online forums when I was going through the diagnostic process.
"Finally, as someone who has been resolutely reluctant to ask for help, the pandemic has made me realise that sometimes I just need to."
My friends and family have been amazing, especially in the early days. When we experienced food shortages and a dearth of online shopping slots, my boss and best friend would drive around finding quieter shops for me, then pick me up and take me to them, helping me navigate through the entirely new system of arrows, queuing, security guards on the door and blocked aisles. Since March, my sister has been delivering home-cooked meals to me every week, wrapped in a cool-bag and tucked under a bush just outside my house.
So many friends and family have offered their help and support with shopping, phone calls, visits through the window, I’ve been wonderfully overwhelmed. A surprising outcome has been people’s new understanding of how it feels to be isolated, at home.
Of course, as we move out of the first wave and enter an uncertain future, there is a downside to this positivity. Charities are being decimated, numerous staff members in MS organisations such as the MS Society, are losing their jobs and with it, we will be facing a reduced service.
We face an uphill struggle, both in coping with the pandemic and the seismic after-shocks. Now, more than ever, we need to continue to look out for each other.