While many of the people we talked to had been trying to manage alone with their Long Covid, or with help from their GP, some had been referred to specialists. In this section we discuss their experiences.
These specialists included paediatricians, cardiologists, neurologists, psychiatrists, fatigue specialists, and specialists from the pain clinic. We asked young people with Long Covid and parents caring for young people with Long Covid about what it was like seeing specialist health care professionals.
Although a few described positive encounters, many described having more negative experiences. A common reported experience, especially for those who were unwell in the early days of the pandemic, was of feeling dismissed or not believed, that “no one wanted to acknowledge” or engage with Long Covid.
Sasha says that she felt no one wanted to acknowledge, engage with or take ownership of her child’s Long Covid. She says she felt “rather belittled and fobbed off for the whole journey.”
Initially, little was known about Long Covid and some of the people we talked to thought that the specialists seemed to be more concerned with ruling out problems and other health conditions than trying to help manage the symptoms of Long Covid. Parents had sometimes been told that children couldn’t get Long Covid and felt that they had to really struggle on their child’s behalf. For those who had Long Covid themselves this was particularly exhausting.
Michelle feels dismissed by doctors. She says it took a very long time for them to accept that her son’s symptoms could be related to Long Covid.
Richard and Cecilia are both doctors who have children with Long Covid. They talked about trying to access specialist care for their children. Richard, who also has Long Covid himself, says it’s given him a “fantastic insight” into what patients have to go through.
Richard said the pain clinic team were “vile and patronising” to his teenage son.
Beth is happy with her daughter’s paediatrician and felt reassured that someone was actually taking her health problems seriously. As Catherine noted, doctors varied, not least because increasingly some had personal experience of Long Covid in their own family. While Emma said that an appointment with a psychiatrist was one of the most negative experiences of her entire life, she says another doctor was “a lot more compassionate.” Richard praised the cardiologists who saw his son.
Emma A said it felt really awful not to be believed. However, she describes another doctor who was “a lot more compassionate.”
Colin says the cardiologist (who had had Covid himself) was really good. He spoke directly to his daughter rather than to him.
Lucy A says that the paediatrician made her feel that he didn’t believe her. The therapist she sees for her anxiety has been helpful.
Jake really likes his fatigue specialist and has had a very positive experience with her.
Gracie was impressed when she saw the community paediatrician in 2020. She said that she was really good and “As soon as we saw her, she was like, ‘That’s Long Covid,’” and, you know, so that can take quite a while, but it was really quick and I’m very thankful.
By 2021, specialists, GPs, and the public were all better informed about Long Covid and more services were set up – see Long Covid clinics where we describe the experiences of Long Covid hubs and clinics. As a result of this growing awareness, fewer people we talked to in later 2021/22 felt that they were not being taken seriously although frustration with the lack of treatment options remained.
For more healthcare experiences, see Consultations with GPs.