Managing a chronic illness can be stressful, regardless of a global pandemic. Here, Robert Joyce explains how COVID-19 has impacted his healthcare routine.
Managing the health of a nation is difficult. There are so many stakeholders. First you have the patient – who I believe we should be at the centre of every healthcare system. Then you have healthcare professionals, NGOs and charities, administrators, manufacturers, government decision-makers and regulators, insurance companies, and many other organisations who are in the public and private sector.
Since February, healthcare systems around the world have had to adapt to prepare for all the COVID-19 patients. This has put massive pressure on individuals, healthcare services and the support systems that surround them to provide the care needed to save lives.
Their work is hard and it has not stopped yet.
Unfortunately, the focus on dealing with the pandemic has meant that other services have been reduced or even withdrawn. I have experienced this first-hand and I know many other people who are waiting for treatments that are on hold to resume.
In this post I want to highlight some of challenges, but I also want to share some of the positives that have surfaced as a result of this pandemic.
Around the world healthcare systems were largely unprepared for a pandemic of this scale. One area of major concern was the lack of capacity in hospitals to handle a sudden and continued surge in patients. Most hospitals had been operating at or over capacity. In many cases the equipment needed was not there, and PPE (Personal Protective Equipment) was not easily available. There was often no spare capacity or supplies of necessary equipment.
In the crisis, many governments acted quickly to implement new laws and secure funding to increase capacity where really needed. It has not been perfect, but now we know that we can complete monumental tasks if necessary. Now, we should use this to fix the other problems.
This, in my opinion, has been one of the biggest risks of this pandemic. There are people who require ongoing treatment for new and existing illnesses that has nothing to do with coronavirus, which have stopped in order to help prevent the spread of COVID-19. In some cases, it is unknown when treatments will restart.
This is a massive risk and concern to those living with potentially life-threatening illnesses, who are facing delays in their treatment. We do not know how long this pandemic will continue – it could be years if a vaccine is not developed.
I believe the system still needs to treat these other illnesses. Other conditions have not disappeared and they are still affecting people's lives. Should there be safe havens for people who are immune compromised so they can continue their treatments?
Getting an X-ray, MRI scan or even a blood test is taking much longer than usual. Many illnesses are time-sensitive and the longer you wait to be diagnosed and treated, the more severe the illness might become. Some illnesses that are treatable during the early stages can become fatal if left to develop.
I had personal experience with delayed treatment. In February, my walking took a turn for the worse. The decline continued into March and I was really concerned I would not get treatment for this new exacerbation. It wasn’t until late April that I could go to hospital to get help. I couldn’t help feeling like this was too little too late. I have not recovered to where I was in January, but at least I got the treatment I needed in the end.
If I had stayed at home and not sought medical advice, there is a good chance things would be much worse now.
Chronic illness is stressful. There are so many unknowns about the progression of your illness. It can take a long time to develop the mental strength to live with a chronic disease and not everyone gets there. This can lead to stress, anxiety and depression.
Similarly, this pandemic has increased the burden on our mental health. Many people who have never needed this type of support are now struggling. The simple task of buying food for your home, or sending a card to a loved one, is now a journey strewn with risk. If I leave my home, I need to see everyone as a potential carrier of the virus.
The mental burden is immense, on top of the burden of chronic illness.
There are various ways to access therapy online or telephonically, so if you feel you need professional support, reach out to your primary healthcare physician for tips on how to access this.
This topic is very close to my heart as I work part time as an Assistant Researcher. My role is to be the voice of the patient. I am embedded in the research, often called upon to give an opinion on some question the researcher has raised. Because I am there most of the time, I can see the ways the research could change to make the result better for the patient.
The level of PPI in new research, especially in connection with treatments for COVID-19, has dropped from the usual level. Now more than ever, the patient's voice must be heard, and not just in medical research. New policies are being planned by governments and the impact of these on us, the patients, and the public are seismic.
Our voices must be heard.
We have implemented data protection rules around the world to protect our privacy and data – an important consideration for all of us. However, at the early stages of this pandemic some of these rules were quickly found to be a block to getting effective treatment.
One example is prescriptions. Living in Ireland I have to get a paper prescription from my doctor and physically bring it to the pharmacy to ensure it meets privacy regulations. Now this can be done using secure e-mail, but this is a temporary measure and might be withdrawn once the crisis passes.
This online system saves people like me, who may be immunosuppressed, from having to risk exposure to other people and I think this should become the default. We just need to find a more secure way of doing it. Once an electronic health record (EHR) is developed for a country, paper prescriptions should be a thing of the past.
Travelling to see a doctor can be a big difficulty for some people. Often because of the travel time and cost (it takes one hour and twenty minutes to drive to my neurologist and public transport isn't a viable option), or for other medical reasons.
To be able to meet my doctor online and get advice and treatment plans, all from the comfort of home, saves so much effort, and it becomes a less stressful encounter. For example, I am currently using video calls for my sessions with my psychologist. This was always a tough visit because of the travel time and its impact on my pain levels and fatigue. Now it is a much better experience.
At the start of this post I said the medical system is complex. And like any complex system, at times of stress, it highlights its weaknesses. There have been problems, some more easily solvable than others. But there have also been some good outcomes.
I believe we should take this opportunity to use creativity, focus and determination to make lasting changes in order to future-proof our healthcare systems so that we can face the next crisis with more preparedness.
NPS-TPE-NP-00017 May 2021
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