Sources of information and support for Long Covid
In this section we cover how parents and young people found information about Long Covid, what helped, and where there appeared to be gaps in...
Like others with lasting symptoms after Covid, young people had consulted with their GPs in the hope of some advice, tests, treatment, or referrals to specialists. Here we discuss:
Young people with Long Covid rarely had much previous experience of accessing care from the GP and were often guided by their parents about whether and when to consult. A couple of the young people we talked to said that they had not consulted a GP but thought that their parents had done so on their behalf.
Ben, a 14-year-old, noted that the GP talked more to his parents than to him. Kiran had not needed to see the GP because her symptom flares tended to only last for around a day.
Parents were sometimes at a loss about where to get help, especially when, as Lisa explained, her 17-year-old daughter was ‘on the floor.’ The GP practice was closed and although a paediatrician was involved in her daughter’s care, she did not know who to call.
Some people, like parent Diane, were reluctant to talk to their GP about some symptoms as they were concerned about wasting the GP’s time.
Shakila, a parent with ongoing Covid symptoms, had found it really difficult to see a GP in person. Although she was interviewed in June 2022, she thought this was because face-face appointments were not being allowed due to the pandemic.
The young people we talked to, and their parents, often described their own GP as ‘lovely,’ ‘helpful,’ and ‘trying to do their best.’ Those who had a GP who was sympathetic and (importantly) appeared to believe them when they explained how they felt, often described feeling that they had been ‘lucky’ with their care, compared to other people they had heard from in the media or in support groups.
Young people and their parents wanted to know that appropriate investigations and referrals had been made and appreciated GPs who took the initiative, followed up on referrals, and checked in on how they were managing.
While everyone wanted an explanation and a treatment for Long Covid, people recognised that GPs did not yet know how best to treat the condition. Some parents, like Deidre, acknowledged that the GP had a very difficult job when new information about Long Covid was emerging slowly. The GPs who saw Jasmine, and also Jake, explained that there was still so much that was unknown about Long Covid. In the meantime, while waiting for better evidence, help with managing symptoms such as pain and insomnia was needed and appreciated, when it happened.
In the early days of the pandemic there was uncertainty about whether Long Covid could affect children. Young people we talked to, including Evie and Amira, were told by their GP that they would recover soon and were often advised to rest, take things easy and use painkillers to help control some of the symptoms.
Others were given inconsistent advice about whether or not it was a good idea to pursue sports or graded exercises.
The nature of the advice from GPs and the investigations they ordered varied considerably. For example, Amira was told that she would get better on her own while Daisy was repeatedly sent for blood tests that were never conclusive. This variation in investigations was probably influenced by the nature of the symptoms and how unwell the young person was but is also related to the state of emerging evidence on Long Covid and how much support, time, and energy they (or their parent) had to pursue investigations and referrals.
People we talked to understood that GPs were often ordering lots of tests to rule out other potential causes for the symptoms, including heart disease, lung disease, and cancer. This was sometimes well-received but could appear unhelpful if the young person or their parent felt that it just delayed recognition of Long Covid.
Teenagers had sometimes been referred to a paediatrician, a children’s hospital, or a specialist paediatric Long Covid service. Waiting times for referrals varied and some parents who could afford it paid for tests to try to speed things up or consulted privately.
There were also regional differences in the availability of paediatric Long Covid clinics. Although there wasn’t one available in their area, Lucy A’s GP eventually managed to arrange a referral to an adult Long Covid clinic (also see Experiences of ‘Long Covid clinics’).
Young people were often surprised that the care system seemed inefficient and not joined up. Daisy and others did not understand why GPs could not access tests that had been done in other NHS settings. Lucy was amazed that, during online consultations with GP locums who were working remotely, they had been unable to access her notes. Rosie and others also expressed frustration and found it exhausting to see someone different every time and to always have to explain everything again.
Another frustration voiced by some of the young people was the feeling that they were not being taken seriously by their GP, were not believed, or that stereotypical assumptions were being made about what had caused the problems.
Not everyone who had Covid ever had a positive test, especially in the early months of the pandemic. School children started to be tested regularly from Autumn 2020 but those who had been infected earlier had often not been tested. There were some frustrations when services asked for confirmation of a positive Covid test. For example, Rosie was referred to a physiotherapist who insisted that if there was no positive Covid test, there could be no Long Covid.
Some parents said there had been confusion about referrals to hospital and specialist clinics when the procedures were relatively new and staff weren’t familiar with the forms. Catherine said the GP, the paediatrician, and the cardiologist had all been reluctant to prescribe her child a medicine used in hospital care.
Feeling that they knew more than the GP about Long Covid was another source of frustration, especially when the GP seemed reluctant to listen to their experience and ideas. Richard is himself a doctor and was distressed to hear about his son’s experience of seeing a GP.
Lastly, it was of course disappointing that, as a newly emerged condition, there was a limit to the help that the GP could offer. Felix commented that it was nice that people were trying to help but that there wasn’t much that anyone could do, and Jake said that the GP was okay but just didn’t really know what to do. James‘s mother also had Long Covid and after her experience of going to the GP, they concluded there was no point in him going as well.
In this section we cover how parents and young people found information about Long Covid, what helped, and where there appeared to be gaps in...
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...