The COVID-19 pandemic has affected all aspects of “normal” life. How we socialise, how we work, how we shop, how we exercise, how we travel….
For those of us living with one or more chronic illnesses like MS, “normal life” includes regular access to healthcare – whether it’s related to treatments, ongoing monitoring, managing changes in our condition or diagnosing something new.
I live in the UK, where we have a National Health Service which, for the majority of services, is free at the point of use. It’s a massive system, which can be complicated to navigate even under normal circumstances.
So how has the pandemic affected things? Has accessing healthcare become easier or more difficult? What have I learnt about managing my healthcare?
It’s definitely been harder managing medical issues during the pandemic. It’s been scary going out in public. In fact, I’ve not actually travelled beyond my back garden since 6th March 2020. However, a pandemic doesn’t mean that other health issues disappear. I live with several chronic conditions, including MS, that still need to be managed. Since the pandemic started, I’ve had health issues emerge that have needed to be dealt with.
The idea of going to the GP surgery or a hospital at this time makes me anxious. Particularly at the start of the pandemic, when we knew less about the transmission of the virus, I was filled with doubts about what safety measures would need to be taken to protect patients and healthcare workers. However, I was always clearly informed about whether appointments were being delayed, cancelled or switched to a telephone consultation and everyone was always very understanding and patient.
Now, I’ve had several telephone appointments with clinicians. I prefer it! It saves me time and energy, particularly as some of my care is based a long way from where I live. It’s a five-hour round trip to see some of my consultants. With a phone call, I can be finished within 20 minutes!
I understand that this may not be suitable for all types of appointments or for everyone. That is where good quality information about what to expect and the rationale behind telemedicine is important.
Accessing treatment and care
Many people I know have had their treatment stopped or put on hold during the pandemic. This has caused a great deal of worry and anxiety about how this will affect their conditions. In MS specifically, an MS Society and MS Trust survey shows that the pandemic is clearly having an effect on how MS services can meet the needs of people living with the condition.
I’m lucky because I’m able to get all the medications that I require for my various conditions from my GP. They set up an electronic form on their website so even people who aren’t registered for online services have been able to request repeat prescriptions. There’s been supply issues with certain medications but the pharmacy has always been able to offer alternatives. Sometimes it’s taken longer to have the prescription filled because the pharmacy is over-worked, but they’ve allowed people to submit their requests earlier to compensate for this.
My sister lives with ulcerative colitis, which has required her to go to hospital for her treatment, as it’s an IV infusion. She spoke with her medical team at the start of lockdown and they were able to delay her infusion for a few weeks. This gave the hospital more time to arrange stringent safety protocols, including conducting infusions in a building separate from the main hospital.
It was still a nerve-wracking experience though, particularly as it involves an 80-mile round trip and my sister was worried about having to use a public toilet on the way – a real possibility when living with inflammatory bowel disease.
However, once she was there, she found the process very reassuring. Staff were wearing protective equipment and so was she, her temperature was taken, she had an individual cubicle in the infusion room (and she didn’t have to stay any longer than necessary. I also know of people who have had their hospital infusions moved to their homes.
There are some areas for improvement though. More information is needed beforehand to make patients aware of what to expect if they do need to go to the hospital. This would provide a degree of reassurance. A video or detailed information that walks someone through the new way of attending appointments would be useful.
Another improvement would be a point of contact other than your consultant or specialist nurse for information specific to a treatment. Healthcare professionals have been very difficult to contact during the pandemic and sometimes weren’t able to answer questions about the long-term practicalities for specific medications.
The national patient associations didn’t necessarily have this information either and getting information from the company that makes the medication is made complicated by the regulations governing how pharma companies are allowed to interact with members of the public. There is a definite need to look at how we can address these breakdowns in the lines of communication.
Knowledge is power
The need for complete and clear information about managing healthcare during the pandemic has been a constant. It has been particularly important when I found out my neurologist, like many other clinicians, was being redeployed to help on COVID-19 wards. I had to ensure I knew how to contact someone in my MS team if necessary. I also made sure I knew what I needed to do and who I needed to inform if I was to catch coronavirus. My GP was particularly helpful with talking me through the processes.
This is where being an informed patient became really useful. I believe that healthcare isn’t only about the care I receive from clinicians, it’s about being able to look after myself too. I armed myself with as much information as possible about MS and COVID-19, from research blogs, charity and patient association websites, the NHS website, the World Health Organisation, and medical journals. I also ensured I was signed up for alerts so that I was staying as up-to-date as possible.
Despite being armed with information and being able to manage as much of my healthcare as possible from home, my anxiety about visiting clinics and healthcare settings hasn’t disappeared. I’ve received letters informing me of appointments in several months’ time but no information about whether they will be in-person or over the phone. If I don’t need to be examined, I’d much rather have the appointment on the phone. Anxiety about lockdown being lifted, a possible “second wave” and no idea about when a vaccine or effective treatment for the virus might become available has meant I’m reluctant to leave the house.
How can I manage this anxiety in the long term? I can’t avoid hospitals and clinics forever! This type of anxiety is definitely something that needs to be addressed – chatting to others on social media, it appears I’m not the only one feeling like this.
There have been many facets to the challenges caused by the COVID-19 pandemic. Accessing healthcare has been a major one that I believe will have lasting consequences for many people. There’s already been lots in the UK media about what the effects of delayed diagnosis, delayed treatments and reluctance to access healthcare will have on the long-term health of the population. Things won’t change overnight so, as someone living with a long term condition, I believe I need to stay informed, keep in touch with my healthcare team and keep addressing my anxiety!
NPS-IE-NP-00010 August 2020