Messages for healthcare professionals about Long Covid

The people with Long Covid who we have spoken to in 2021-22 had often struggled to understand what was happening to them. It was hard to accept that because it is still a relatively new condition, healthcare professionals did not know how to treat it, or even how long it might last.

On this page we focus on what messages children and teenagers, and their parents, had for health professionals. They talked about two main issues:

  • the way that healthcare professionals deal with patients with Long Covid
  • the way that healthcare services are organised

Interactions between people with Long Covid and health care professionals

The newness of Long Covid and its wide range of unpredictable symptoms has left many people with Long Covid living with great uncertainty. They have not known when, or even whether, they will get better. A very important aspect of people’s experiences was the importance of feeling listened to and believed by healthcare professionals.

When Evie was asked what messages she would like to give to health professionals, she said “more than anything just listen.” Lucy talked about being upset when her paediatrician didn’t believe her symptoms were caused by Long Covid.

Evie needed her doctors to ‘really listen’ to what she was struggling with and not to ‘brush her off.’

Daisy, a teenager with Long Covid, said doctors need to “acknowledge that there’s something wrong.” She contrasted the way ambulance staff and paediatricians had made her feel.

Daisy praised the way that the ambulance staff treated her, but she was frustrated because she felt some paediatricians thought her pain was caused by anxiety.

Lucy A also cautioned that doctors need to be “mindful” when they were talking to children and teenagers because “they’re still kind of developing their self-image.” She gave an example of the paediatrician talking about her gaining some weight “a lot” and how that was a “good thing.” But this had the effect of making Lucy feel self-conscious and that she needed to lose weight.

Gracie’s mother and other parents wanted doctors to be aware that other family members were also affected when someone had Long Covid. Lindsey, whose child had Long Covid, thinks healthcare professionals should be more open and support people with Long Covid in raising people’s awareness of the condition.

Gracie’s mother appreciated it when a healthcare professional believed her daughter’s experience of symptoms and also recognised that it was hard having a family member with Long Covid.

Organisation of health care for people with Long Covid

It is known that Long Covid can affect many different bodily systems at the same time. One of the most common things that parents told us about was the need for Long Covid healthcare to be more joined up.

Sara, whose child had Long Covid, said a joined-up approach would help because Long Covid is “so complicated,” and people need “some cross-discipline proper observation.” When Daisy’s mother was speaking about her child’s care, she said “You have to wait so long for different scans when they could all be done at once. You know, surely it’s more cost-effective to have Daisy in for 24 hours, scan everything that needs to be scanned and then come to a conclusion.” She thought health professionals “are working on traditional pathways” but for Long Covid “From what I’ve looked into, we need to be thinking outside the box.”

As a doctor and a parent of a teenager with Long Covid, Catherine recognised how important it is to be seen at a Long Covid clinic early on. She said the service is still evolving “they’re building the aeroplane while it’s flying.”

Catherine, a doctor and parent, said it was important to be seen at a Long Covid clinic as soon as possible. Beth, whose child has Long Covid, thinks that a multidisciplinary team should include a specialist who could help children and teenagers who have any mental health problems as a result of their Long Covid.

Danie, whose child has Long Covid, agreed about the need for specialist services for children. She praised the staff in the paediatrics unit, and said they were “absolutely amazing,” “very understanding,” and “easy to communicate with.” But Danie also said that it had been “awful” when her child needed to go through Accident and Emergency services at a general hospital.

Danie was frustrated that she couldn’t take her daughter straight to a children’s hospital, instead having to go via Accident and Emergency. This process put her off seeking help.

For more information on health professionals see Consultations with GPsConsultations with specialists and Long Covid clinics.

You can read more here about the messages that adults with Long Covid had for healthcare professionals.