During the pandemic, many patient organisations have grappled to adjust to new ways of working and priorities. National Voices, the coalition of charities that stands for people being in control of their health and care, have identified an opportunity to hear and learn from people’s health experiences during the pandemic. They set up OurCOVIDVoices; an online platform which encourages people to share their experiences, covid related or not. These experiences include accounts on the impact covid-19 and lockdowns have had on people’s physical and mental health.

National Voices analysed many of the submissions, identifying common themes between the experiences. This covered concerns about food, housing, and money, but they particularly focused on topics related to people’s health. Topics included frustration about the communication or information sharing relating to their health, individual levels of risk, concerns about access to medications and health services, and experiences of remote care. Using the identified themes, national voices created eight I-statements to summarise what matters to patients during the pandemic. 

The eight I statements are:

1. I am listened to and what I say is acted on.
2. I make decisions that are respected, and I have rights that are protected.
3. I am given information that is relevant to me, in a way I understand.
4. I am supported to understand the risks and uncertainties in my life.
5. I know how to talk to the person or team in charge of my care when I need to.
6. I know what to expect and that I am safe when I have treatment and care.
7. I am supported and kept informed while I wait for treatment and care.
8. I am not forgotten.

You can find the statements here: National Voices I-statements

One of the main aspects of care that these statements cover is a need for good communication. This seems even more important during a pandemic when patients are worried, and many have felt forgotten. Knowing how to contact health services and what to expect when we enter healthcare services can help alleviate some of these concerns. Another stand out aspect of these statements is the importance of providing patients with all the information available, in a way they can understand and use. Being kept informed is also particularly important during a pandemic as information and services have changed so much for patients. Having continued communication and open conversations can help patients feel more at ease and support by healthcare services, despite the many uncertainties and changes. 

For me, these statements highlight that what patients want during a pandemic is what we have always wanted. To feel listened to. To feel included and informed. To feel our decision and preferences will be followed.

Covid-19 has hugely changed the delivery of healthcare which heightens worry and concern for many patients. As patients, we aren’t looking for health professionals to have all of the answers. What is more important is for us to feel included and listened too. Often saying ‘I don’t know but I will keep you informed’ is just as reassuring for patients during these uncertain times.

Emma Doble, Patient Editor, The BMJ