This section explores children and young people’s experiences with accessing specialist Long Covid clinics. These included both virtual and in-person clinics. They often involved a team of clinicians, including physiotherapists, occupational therapists, psychologists, and sometimes a paediatrician or other doctor.
This section includes the following topics:
- Challenges accessing Long Covid clinics
- Experiences of the Long Covid clinic
Only a portion of families we interviewed had attended a Long Covid clinic. Many said they had experienced difficulties getting a referral to a clinic.
Challenges accessing Long Covid clinics
Although Long Covid clinics for children were set up in June 2021, they were not available to all families across the UK. This lack of coverage made it difficult for some families to get appointments. When we were talking to people for this study (2021-22), there were no Long Covid clinics for children in Scotland, and while there were Long Covid clinics in Northern Ireland, it was unclear if they would be available for children.
Colin was concerned about the lack of specialist care available for his 16-year-old daughter in Northern Ireland.
Daisy (14 years old) was frustrated that she was unable to get an appointment because of where she lives.
The families we spoke with felt that the burden was often on them to find the clinics in the first place, rather than their GP suggesting a referral. Daisy (14 years old) said that she and her mother had tried to get referrals for a Long Covid clinic, but that her doctors had said, “We don’t know how you could get access to them.” Daisy felt that her family “had to do a lot of digging ourselves.”
Families also reported feeling as if it was up to them to maintain contact with services so that they didn’t get ‘lost in the system.’ They described this as a ‘battle’ to get to the right people and eventually get an appointment with a Long Covid clinic. Lindsey recalled, “We’ve been referred to that, but we don’t know where that referral’s gone…it’s probably something that we need to push again.”
Colin and Jana both expressed frustration at having to coordinate their children’s care pathways themselves, making sure that referrals had been made and being on top of things. Colin reflected that he would have found this almost impossible if he had had Long Covid himself.
Colin had to ring several different people in his local trust before finding someone who could tell him about the upcoming Long Covid service for children.
Parents described feeling as if they had to ‘prove’ the seriousness of their child’s situation to be granted a referral. This was distressing and required a lot of additional time and effort over phone calls and emails. Emma B. said, “Our experience with the Long Covid clinic after a long, long wait and lots, probably over 20 hours of phone calls was horrific, not one I enjoyed.”
Michelle had to explain her family’s story over many emails before they were taken seriously. She said the GP had been resistant to the idea that children could get Long Covid. She also has Long Covid herself, which made navigation of referrals and appointments for her 4-year-old son Vinnie much more difficult due to her fatigue and brain fog.
Michelle thinks that some doctors don’t believe that young children can get Long Covid. She said she struggled to get her GP to believe her child was experiencing it and refer her son to the Long Covid clinic.
Emma A and her 10-year-old daughter had been seen in a Long Covid clinic but had heard nothing about when the next appointment would be. She said, “I should have pushed but I’m tired of being characterised as this pushy parent, you know, but equally it’s been eleven weeks now and she hasn’t walked and we’re really trying to live in the moment, because it’s really difficult to think that my daughter hasn’t walked for eleven weeks, and I’ve got no idea when she’ll walk again.”
Some people had simply decided not to request or go forward with a referral. Claire said she had heard that their local Long Covid clinic focused on respiratory symptoms, like breathlessness, which her 12-year-old daughter had not experienced. Francesca decided that the referral wasn’t necessary anymore as her daughter’s symptoms had improved.
Francesca said that her daughter was referred to a Long Covid clinic, but they had decided that it was no longer needed.
Several people we talked to were unaware that Long Covid clinics existed, such as parent Sonal, who said, “Is there a Long Covid clinic? I’m not aware of that…I think all they’re doing is focusing on my diabetes. Their attention is just there, I think.”
Experiences of the Long Covid clinic
Once they were able to get an appointment with a Long Covid clinic, some people were disappointed by the lack of help available. When we were talking to people in 2021-22 there was very little available in the way of treatment for Long Covid, and the condition was sometimes not well-understood by clinicians (see ‘Talking to others about Long Covid’). While people appreciated having someone listen to them, the focus was on managing symptoms, which was demoralising for some families who were expecting testing, investigations, and treatment.
While Catherine felt relieved that the team at the Long Covid clinic spent time listening to her 17-year-old son’s story, she was disappointed at the lack of treatment available.
While some families had been offered follow-up support with an occupational therapist or physiotherapist, not everyone had been offered these therapies.
Sasha’s daughter was not offered any follow up support after the Long Covid clinic appointment.
Emma A was eventually offered occupational therapy and physiotherapist support for her daughter but was concerned that the psychiatrist did not believe Bella’s symptoms were physical.
Other families felt that there was too much focus on psychological causes of Long Covid. Like Emma A, Emma B believed that the clinicians thought Freya’s symptoms were ‘in her head.’
Emma B was expecting more help from the clinicians, who questioned whether Freya’s physical symptoms were ‘learned behaviours.’
However, families also had positive experiences with Long Covid clinics. Some appreciated being seen face-to-face at their Long Covid clinic and liked that clinic staff checked up on them between the scheduled appointments.
Abigail (13 years old) recalled how her doctor spoke to her kindly and respectfully, like an adult.
Some families were referred on for further investigations. Jake (16 years old) was referred to some peer support group therapy with other teenagers around his age, where they could talk to each other about their experiences.
They also received advice and assistance on managing their illness at home, including building a daily routine and plans for managing school.
Lucy A (14 years old) has made a plan with her doctor at the Long Covid clinic for managing her symptoms at home.
Overall, families found it most beneficial when clinicians took a holistic approach, were up to date with research, and checked for other health conditions.