Catherine

Catherine’s youngest son caught Covid at school in December 2020 just before his 16th birthday. Initially he wasn’t particularly ill with Covid but in the following months was admitted three times to hospital and was seen by a number of different consultants, both privately and in the NHS, unfortunately they felt none of those appointments had been very helpful and some of them had been the exact opposite. Even though, as a GP, Catherine is used to navigating the health system, it was 9 months before her son was seen at a Long Covid clinic, where they did feel listened to but didn’t feel there was any treatment available that would help. They are considering going to Germany for private apheresis treatment. Catherine was interviewed in December 2021.

Catherine’s youngest son caught Covid at school in December 2020 just before his 16th birthday. Before Covid he was very healthy, fit and active, loved to mountain bike and had lots of friends and was doing well at school.

Initially he wasn’t particularly ill with Covid but had a loss of taste and a cough. A few weeks after he complained of dizziness which got worse to the point of not being able to stand up or walk without falling. In January he suddenly lost power and sensation in one arm, and was admitted to hospital. Following some brain scans he was diagnosed as having a migraine, his arm took a month to recover, and the dizziness improved. In February he was still short of breath but attending school though he had not returned to riding his bike. He then developed a really high fever, headache and rashes and was admitted to hospital again overnight. He still continues to have a fever of 38 most days 10 months on.

After his admission to hospital Catherine’s son continued to feel unwell and became very lightheaded when standing causing him to faint and by the end of March 2021 he wasn’t able to go to school and was admitted again to hospital. Catherine is a GP and had noticed her son’s heartrate during this period was doubling when standing up and she suspected PoTS (Postural Tachycardia Syndrome- an abnormal increase in heart rate that occurs after sitting up or standing), but this wasn’t acted on by her son’s health professionals until he was admitted to hospital at the end of March 2021 and he was diagnosed and started on some medication. She said, “I was shocked and appalled at the treatment we received from the NHS at one point. And I just could not understand why my colleagues were not able to hear what I was saying. I felt like I was speaking in another language. And why they didn’t seem, I just felt like we’d been abandoned essentially.”

Catherine, a single parent, was juggling working as a GP, managing hospital appointments and looking after her son, it became a very stressful time for her.

As her son’s symptoms “just got worse and worse”. Exertion of any kind physical, social (talking) or involving too much noise could cause her son to crash making his symptoms worse for days and weeks afterwards. They saw private specialists including one who knew more about POTS and gave them a treatment plan, but local doctors were reluctant to prescribe the drugs in the plan as they had no knowledge of PoTS. During this time her son was not attending school and she was worried about her son managing or fainting on his own at home so tried to work half days where she could. His older brother returned home from university and looked after his brother over the summer holidays allowing her to continue to work full-time. Catherine was hoping that her son would improve enough to return to school at the end of the summer, but brain fog, concentration and memory problems along with his physical symptoms made returning, even online, to school impossible.

At this time Catherine felt very stressed and worried about her son and felt that her patient’s care was being compromised so took some sick leave, but she has since returned to work but on reduced hours as a temporary solution. The long-term impact of caring on her work and finances is of great concern to Catherine. A year on Catherine says it’s still “very up and down, it fluctuates. So, I think you know even day-day and if he’s having a good day, haircut and he’s had a shower, that was a lot for him in one day at the moment.” Catherine and her son find the uncertainty of how to deal with what’s happening difficult “We don’t know how long it’s going to last and what the likelihood is of recovery whether it be a full recovery or not. We just don’t know the answers to any of those questions.”

Although they have a supportive GP and have now been seen at a Long Covid clinic, where a least they felt listened to, they didn’t feel there was any treatment available that would help. At the time of the interview, they were considering going to Germany for private apheresis treatment (where the blood is passed over a heparin filter to filter out unwanted lipids and proteins, a process it says reduces the stickiness of the blood and improves microcirculation) but the uncertainty and cost of the treatment and the risk of her son catching a virus while travelling was a worry for Catherine.

Of the helpful advice given Catherine feels that pacing and rest are really important and a very slow increase in activity when you’re able. She feels professionals need to stop psychologising Long Covid, listen to patients and their carers more and stop dismissing the physical symptoms of the condition.

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.”

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Catherine is taking her son to Germany for apheresis, a private treatment that’s not available in the UK – she says she may even need to re-mortgage her house to fund it.

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Catherine said there were so many uncertainties about her son’s illness and future. She has found it helpful to accept that the situation won’t resolve quickly.

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Catherine says she didn’t find it easy to navigate and access care for her child. She says some clinicians are “more on the ball with it than others.”

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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.

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Catherine’s son tried to start sixth form but it was quickly clear that he wasn’t going to continue because of his difficulties sleeping, fatigue after activity and brain fog.

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Catherine finds it especially emotionally hard when her son has a relapse. She doesn’t have a social life anymore as everything is taken up by her son’s needs.

Age at interview 53

After time off work with stress, Catherine worked reduced hours. She passed up opportunities for promotion and wondered if her long shifts were hindering her son’s recovery.

Age at interview 53

Catherine is considering re-mortgaging her house to cover her family’s expenses, which has included travelling abroad for treatment.

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Catherine’s eldest son helped care for her younger son so she could work during the summer.

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Catherine described a period of “really crazy juggling” of work and her son’s hospital appointments.

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Catherine feels that if young people’s symptoms don’t fit into “an easy box with a label” doctors have a tendency to put it down to anxiety or chronic fatigue syndrome.

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Catherine’s son’s symptoms ‘fluctuated’, and too much exertion made his symptoms worse. He was learning to pace himself and spend more time resting.

Age at interview 53