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:
- Accessing care from the GP
- What young people saw as good GP care for their Long Covid
- Advice, treatments and referrals from the GP
- Frustrations and disappointments about GP care
Accessing care from the GP
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.
Claire explained that she did not often call the GP, with whom she has a good relationship, but did so when her son developed the ‘frightening symptom’ of blackened toes.
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.
Mehjabin is a young carer for a parent with Long Covid and described the difficulty of trying to get care through eConsult and feeling bounced between 111 and A&E.
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.
Diane had not spoken to the GP about her loss of taste, as she didn’t think it was ‘serious enough.’
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-to-face appointments were not being allowed due to the pandemic.
Shakila hasn’t really been able to talk to a doctor about her symptoms. She says they are ‘not interested’ in Covid and prescribe paracetamol. She has stayed home for much of the past year.
What young people saw as good GP care for their Long Covid
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.
Hannah described her lovely GP who listened, was helpful, and never made her feel as if she wasn’t believed.
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.
Gracie’s mother Claire said that they have a ‘fantastic’ GP, who was the only professional who checked in on how she was managing, as the mother of a teenager with Long Covid.
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.
Sally and Ricky’s young daughter complained of a ‘bumbly tummy’. They found it challenging to know whether their young daughter was experiencing Long Covid symptoms, as she couldn’t voice her feelings like an older child.
Advice, treatments and referrals
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.
Ben was expecting a quick recovery which didn’t happen.
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.
Lucy A says the GP took the Long Covid seriously and made referrals to both a psychiatrist and a paediatrician.
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.
Her GP was not very helpful but Eleanor managed to see a doctor who specialised in Long Covid via a contact in her church.
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’).
A doctor speaks – Helen Salisbury discusses when to see your GP
Frustrations and disappointments about GP care
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.
Daisy was surprised that the GP just kept ordering more blood tests, which appeared wasteful.
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.
Jasmine felt that the GP was simply not listening when they suggested that the reason she had insomnia was that she was reading her phone at night.
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.
Richard was very upset that the chest pains experienced by his very fit teenage son were not taken seriously by his 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.