My name is Sue, I am living with non-Hodgkin lymphoma, which following surgery to remove my spleen is in remission, and I have had the lower right lobe of my lung removed due to the presence of a non-small cell lung cancer. I recently spoke with Josh and Stephen at Aurora about how COVID-19 has impacted my life as a patient and how I think we can work together to make the most out of the situation we find ourselves in.
Every person is different, there is no “one size fits all” when it comes to healthcare. This is going to become increasingly apparent as COVID-19 continues to change how people access their care.
To adhere with social distancing guidelines, physical appointments with your doctor or nurse may no longer be possible, which may raise concerns for many people. However, I do believe there are positives to be drawn from the situation we now find ourselves in and ultimately the changes being made now, out of necessity, may benefit us all in the long run.
For these changes to be successful, it is crucial that we assess each patient’s situation on a case-by-case basis, and provide that person with the necessary support, before making decisions regarding the future management of their healthcare.
My diagnosis experiences
In 2006 I was diagnosed with non-Hodgkin lymphoma. I was told in-person by the consultant that, the worst-case scenario for my type of non-Hodgkin lymphoma, was a prognosis of about two years, even with a stem cell transplant. This was swiftly followed by “I’m running late in clinic; I need to see the next patient.” It was an extremely abrupt experience.
When I was diagnosed with lung cancer however, it was confirmed over the phone. Taking this call in the comfort of my own home, with the support of my loving husband, was a much better experience. I didn’t feel as though I had to keep it together in front of the consultant, I didn’t feel rushed to come to terms with the diagnosis and I wasn’t worried about the stupid parking meter. I had time to truly process it. I was also immediately called by a cancer nurse specialist, who gave me all the information I needed.
Whether it’s in person, or virtually, people should be supported in their conversations with their healthcare professional
I am not saying that virtual consultations are for everyone, as I appreciate the value in face-to-face meetings. However, I do think that if they are managed correctly, this type of consultation could benefit many patients and reduce the workload of the NHS. COVID-19 doesn’t seem to be going away any time soon so we may see virtual consultations become standard practice.
We must realise that the “new normal” will be different for everyone
As we try to shape this “new normal”, it is essential that patients are given guidance about the kind of questions they might like to ask during the consultation, whether it is in person or virtual. Often the anxieties, stresses and worries that are truly burdening a patient do not form the basis of the consultation, but rather arise at the end (the hand on the doorknob moment) or don’t arise at all.
I consider myself very fortunate, as I have trained as a nurse, and have a PhD looking at integrated working in healthcare, so feel that I am well equipped to have these difficult conversations with my healthcare professional. However, I appreciate that not everyone may feel confident about discussing their condition with their doctor. Healthcare professionals also have the skills to create an atmosphere where people feel comfortable communicating openly and honestly with them.
As we slowly transition back to normality, I think that we should assess the needs of the patient before making decisions about the management of their healthcare.
Healthcare professionals need to know whether their patients are equipped, both physically and psychologically, to handle the transition to a virtual world. This could include ensuring that they have friends and family to support them, the phone number of a MacMillan nurse for further information or support, or by providing them with technical support.
Turning COVID-19 negatives into positives
Of course, there will always be the need for physical appointments. However, I do believe that we can take some of the negatives that have been brought on by COVID-19, specifically in relation to healthcare, and turn them into positives.
This is an opportunity for growth and I sincerely hope we can look back and think we did the right thing.