Patient Perspectives

BMJ - How we coped with COVID-19 - and Silver Linings (10/12/2020)

The perspectives of 1,720 patient groups during the Covid-19 pandemic

The survey aggregates what patient organisations have learned about how various communities of patients are coping during the pandemic—patients with different medical conditions, in different countries. Judging by the feedback and commentaries from respondent patient groups, fear is a dominant theme among patients. Read Full Survey

EPF Member Patient Perspectives

Bettina Ryll, Melanoma Patient Advocate (Sweden)
"COVID-19 is ravaging through our societies. We already see how it affects cancer patients. In the last weeks, we have seen in our Melanoma community that our follow-up appointments and control scans are postponed while patients have been switched to treatments that are less effective but have fewer side effects, can be taken orally instead of IV or are completely taken off treatment. Clinical trials are closed, leaving patients whom all other therapies have failed out off options while Stage 4 cancer patients are not being given permission to self-isolate at home 'because they had no COVID19 symptoms.' Some patients on forums do not recognise the need to self-isolate and feel that 'cancer was already enough to worry about' and we all possess a high level of anxiety and uncertainty especially when facing rampant levels of incorrect or unhelpful information. We have no reason to believe that this would be different for other cancer communities." 

Read full testimony>>>

Young woman with Hydrocephalus (UK)
"I have not checked if my local doctors are greatly affected but am due to order a repeat dose of anti-epileptics soon. My pharmacy is located in a supermarket a 5 minute walk away and I do not know further measures from the government will impact my ability to obtain medication for my epilepsy and any other unrelated conditions. I have never been in a situation where I have been out of medication for more than a day or two which has not been a problem. I do not know how long it would take for tonic clinic seizures to occur if I did not have my medication to hand."

Mother of a young woman with spina bifida and hydrocephalus (Sweden)
"I don't think we will be out of medical supplies that are necessary for people with SBH as those supplies are sent by transport companies so you don't have to go out to get them. The medical supplies that our country is lacking are masks within hospitals so the staff could be safe (and also other equipment they might need to be safe from the virus)."  

Marcus, Spina Bifida patient (Ireland)
"As someone who has had a disability since birth, I am no stranger to hospitals and my healthcare system. I have had several operations and many more hospital stays due to spina bifida related issues. I have always received a very high standard of care in the Irish health service HSE, despite it's limited resources. 

I would like to thank the doctors and nurses in Ireland who are doing everything they can to make sure that we can limit the spread of coronavirus as much as possible. They are working very long hours in an extremely stressful atmosphere against a deadly virus, potentially putting their own lives at risk in the process. They really are our true heroes in our time of need."

Ania Henley, UK-Ireland Representative for EIT Health Ethical, Legal and Social Issues (ELSI) Board
"My young friend physiotherapist received a letter from our National Health System (NHS) England stating that she is in the High-Risk Group of patients and therefore will have to stay off work for the next 12 weeks.  She and another 1.5m high risk patients were detected thanks to the collection of data kept by NHS Digital.  This data can be used by the government in case of emergencies such as the COVID-19 pandemic.  High-risk patients will be able to receive, if needed, essential food and supermarket supplies, social care and they will be contacted if not heard from to ensure they are not sick alone.  The collection of the data involved a great number of staff who tirelessly executed the task within 48hrs, having to source the information from prescribed medicine, hospital diagnosis etc, to protect the most vulnerable.  This makes us appreciate that Data can really save lives and the very important work of all staff who work on data."

Declan Groeger, MS Patient (Ireland)
"I've been communicating with my neurologist via email and it's working just fine."

Joan Jordan, MS Patient (Ireland)
"Calling my pharmacist in advance so medication is ready for pickup. Not visiting my GP in person to stay safe."

Carine Besselink Berendsen, Kidney Transplant Patient (Netherlands)
"As a transplant patient (happy owner of a new kidney), I care a great deal for good hygiene, especially the proper method of hand-washing, as I used to work as a nurse. To keep my distance from other people seems like a small price to pay to avoid the dangerous spread of the COVID-19 virus. The real challenge is to keep the faith on issues like: are there enough medications available on the long run, can I rely on the continuation of doctor appointments in the hospital? A regular check up nowadays is a bit of a necessity because I happen to be pregnant! So a bit of hope in this time is needed to lighten up every step of the way, as miracles do happen even when time seems a bit desperate."

Cassandra Alexis, Lupus Patient (France)
"One of the discussed medicines for the treatment of COVID-19 is chloroquine and my basic treatment is based on chloroquine. I use hydroxychloroquine in my daily life to treat myself and stabilize the activity of my disease. Without it, much more alarming symptoms might touch vital organs. People who are not sick and or contaminated have gone to drugstores to buy those medicines without any prescription to self-treat themselves without medical advice and stock for emergency measures. I know several lupus patients and others with chronic conditions cannot find Plaquenil in any pharmacy in France. We must stay confined to be safe, but we also must venture outside to ensure we have enough medicine to follow our treatment and stay healthy. As a result of this constant fear, I am plagued by stress, anxiety, insomnia and fatigue, and I hope these will not lead to more aggressive symptoms. This is how the COVID-19 pandemic is affecting my daily life and I hope that other chronic condition patients are not facing a similar scenario."

Borislava Ananieva, Kidney Transplant Patient (Bulgaria)
"As an immunosuppressed patient, with two kidney transplantations, I feel very worried but also relieved, seeing the changes that society is making to keep all of us safe. The current restrictions we are facing are something that many young patients are actually used to doing, during flu seasons, after an immunosuppressing treatment or daily, according to their condition.

I think that the young patient community is very much used to hearing something in the lines of 'You need to do this and this, in order to remain healthy and for your condition to be stable,' and we immediately act on it, because we know what it’s like to be endangered. That’s why I wouldn’t say that the current restrictions are that hard to follow through and I absolutely understand why they are necessary.

As I mentioned, working from home, social distancing, constant hygiene maintenance and trying to keep physically and mentally healthy, while not leaving the house are nothing new or extreme for a young patient with a lifelong chronic condition. I hope that people without chronic conditions take a second to think about how they’re feeling right now and approach people with chronic conditions with a bit more understanding next time."

Ivett Jakab, Liver Transplant Patient (Hungary)

“When I had a liver transplant, my life was completely turned around. Besides being grateful for staying alive, I had to get used to being closed behind the walls of the hospital, and later the walls of my home. Not meeting my friends or relatives I was not living in the same household with. Washing hands, washing doorknobs, washing everything that may come near me. Wearing a mask and being frightened about anyone who may cough or sneeze near me. Does this sound familiar to you?

But the good news is, it got better. Slowly, gradually, but it did get better. One day I could go out to the street at night for a walk while avoiding people. Sometime later, I could meet my friends outdoors. A couple of months passed and I could even go into a mall, a cinema, and eventually go back to high school. Life will never be the same as before. And I am so glad it will not, because I learned to appreciate these little things much more.

I know it is a lot to process now. All the constraints you never had before, having to think through everything once was natural. But I can assure you: It. Will. Get. Better. Be patient. Keep the rules. Life will go on, and if we are fortunate enough, we will remember to appreciate the small thing we wish we had now.”

Niamh Costello, Auto-immune Condition (Ireland)

“Isolation, quarantine and social distancing; these are all new words that have been introduced into our vocabulary the past few months. Words we may never have had to use so frequently in conversations up until now.

The whole world has pressed pause to try to contain this terrifying virus. We are all waiting for the next time we can see members of our family and friends, sing along to our favourite band at a concert, go to the cinema, go out for a meal, meet someone for a coffee, go to a swimming pool, gym, class, lecture and some of us are even missing going to work!

All of these things mentioned above were taken for granted up until now. We did not know that the last day we met our friend for a coffee in a crowded café that it would be the last coffee date for a very long time. It is true to say that most people do not understand something until they have experience of it themselves.

However, it is ok, soon the world will get back on its feet and back to normal once again. The chances of a similar global outbreak happening soon is very slim. You will be able to get your normal life back one day. For a person who has a chronic illness this is our life!

For me, I am used to using the words ‘social distancing’ when someone has a normal cough or cold. I am used to meeting up with a friend and not knowing whether I will be able to see them again tomorrow. I am used to self-isolating at home while my friends go to concerts. I am used to missing out on things that I love doing.

For a person with a chronic auto immune condition, this is the norm. We are very much used to taking serious measures to protect ourselves, as our immune systems are weaker than everyone else’s. We cannot be around people who are coughing or sneezing because if we catch that cold or flu we could end up seriously ill in hospital, as our bodies are not conditioned to fight this regular flu on its own.

We are very familiar with having to stay at home and miss out on things we love doing because some days our bodies just aren’t strong enough to physically get out of bed due to pain, stiffness or fatigue.

During these unfortunate times, you have now all stepped into the shoes of someone who has a chronic condition. You have experienced what we experienced on a daily basis. Try to remember this the next time one of your friends or family members cannot meet up with you. Think of all the things that you could do instead to make them feel included such as phoning or skyping them, offering an alternative day to meet up instead or even a simple text such as ‘thinking of you’ can go a long way to someone who is fighting a chronic condition.

If we can take one thing from this horrible pandemic, I hope it is the action of social distancing. If you have a cough, cold or a virus, remember to keep your distance from vulnerable people. We may not be able to fight it as quick or as well as you can. For you it may mean a day or two off work and you can then go about your normal day. For me it means having to come off my biologic treatment for my illness for up to two weeks, which means my illness may flare up while also experiencing the simple flu that you had in a more severe way.

Let us try to consider these measures when the world is back to normal!”

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