During the first months of the pandemic, people were strongly encouraged to use NHS online and phone services (including 111 and 119) unless they were very unwell or there was no longer term improvement. The GP was usually the first port of call when seeking an appointment or a referral and many of the people we talked to had contacted their GP about their Long Covid. This page covers:
- Getting an appointment with the GP
- Care from the GP for Long Covid
- Frustrations and disappointments
The people we interviewed said how important health professionals’ responses were when they sought help for their Long Covid symptoms, especially because Long Covid was a new and sometimes confusing condition. At the time of some of the interviews, many health professionals did not yet know how best to support people with Long Covid symptoms, and several people had not had access to specialist Long Covid clinics. You can read about people’s experiences of Long Covid clinics and messages people had for health care professionals.
Getting an appointment with the GP
General practices are able to decide which type of system to use to offer appointments to their patients and there are many different models used around the country. Access differed greatly between practices. Some people had to ‘battle the phone system’ to get an appointment while others had a very prompt call back from the GP after they had left a request on an online system or talked to a receptionist.
Esther explains how difficult it was to make an appointment with her GP, although she thinks that if it had been really urgent there may have been another way
People whose practices made appointments available ‘on the day’ told us that they had to log into a system, sit in a telephone queue, or keep trying to call from the moment the system opened in the morning. This was particularly frustrating when all appointments were booked up well before 9am. Vonnie sat for ages in a phone queue. When her phone call was eventually answered she was breathless and could not speak immediately and the call was disconnected.
Shakila said ‘no one sees you anymore’ at the GPs.
Lyn wanted a face-to-face appointment with her GP so he could see for himself how serious her symptoms were.
People we talked to were often aware that their GP practice was understaffed and struggling and said that they were careful not to ask for a consultation unless it was really necessary. Reception staff were sometimes criticised but Fiona A, who was otherwise very unhappy with the care from her GP, said that the receptionist was brilliant at taking her worries about a “spike” in her blood pressure seriously. She said, “the receptionists at my GP surgery are amazing [and] said to me, ‘Tell me what your readings are,’ and within about an hour and a half a doctor phoned back.”
Care from the GP for Long Covid
Awareness about Long Covid only started to grow in the later months of 2020, as it became obvious that some people were not recovering from Covid as expected. At the time of writing (September 2022) there are few options for treatment for Long Covid apart from rest and help with managing symptoms, such as pain and insomnia (trouble with sleeping). Susan’s GP was supportive and prescribed something that helped her insomnia “my GP was quite good at prescribing me something fairly early on when I was describing it. So, I didn’t have to put up with it for too long”.
Fiona B said her GP set up a treatment plan immediately and referred her to a Long Covid clinic.
GPs tried to reassure people that they would get better, but that it could take a while. Sometimes they had also been able to make a referral to a Long Covid clinic, though some people waited several months for an appointment.
People we talked to often expressed sympathy for GPs and recognised that it was still ‘early days’ and so accepted that little is known about Long Covid, including how long it might take to recover. As Esther X said “what else is she going to do? It’s not like she can say like wave a magic wand and go, ‘I’ve fixed you.’” Several others including Zubair and Jennifer commented that the GP was nice, sympathetic, and tried to be helpful but that there was little they could do.
If they did consult, it really mattered to people to feel they were believed and taken seriously by the GP. It was appreciated when GPs showed that they were listening and interested and that they wanted to understand more about Long Covid. Some took the time every few weeks to check in on how the person was managing, which helped people to feel they had not been abandoned. Being able to talk to the same doctor saved time and energy, which was really important for people with Long Covid.
Ben said his GP had been ‘absolutely brilliant’. She had been very flexible. They have become ‘co-experts’ on his Long Covid symptoms.
Adele said that her GP was ‘amazing’ and kept in touch with her regularly. Even so she didn’t mention some of her more unusual symptoms, in case the GP thought she was ‘mad’.
Helen said that there was just something about her conversations with the GP that made her think that she was being taken seriously.
Several people we talked to (Vonnie, Golda, Claire and Poppy) said that they felt ‘lucky’ that their GP believed them and did not try to dismiss their symptoms. This was especially when they compared themselves to other people’s experiences that they had read about in the media or heard about through online support groups.
Paul was referred when his symptoms suggested he might have had a stroke. He thought there is a lack of understanding of the need for more holistic support.
Ricky and Sally commented that even though their GP had not been ‘dismissive,’ they had shrugged and confirmed that no one really knows what to do about Long Covid. Hazeem told us that he had chosen not to consult because there was no treatment, while Diane said her symptoms were not serious enough. Christian – who had access to specialist care – said there was no need to consult the GP. Robert had not asked his GP for help because he thought there would be nothing they could do for his long-term loss of taste and smell.
Frustrations and disappointments
Especially in the early days of the pandemic, people had sometimes experienced confusion (or even chaos), hold-ups, and errors when trying to get a referral from their GP to a Long Covid clinic (in areas where these were available). Judy found the NHS care pathways for people with Long Covid confusing. It was unclear to her if there were plans or policies for how people with symptoms of Long Covid should be dealt with after they have seen their GP.
Helen X was frustrated that her GP offered no plan of care or follow-up.
It was exhausting and distressing for people with Long Covid to have to re-tell their history of Covid and all their symptoms every time they saw a new health care professional. People found it hard to believe that the system wasn’t better joined up and that test results sometimes did not appear to be available to the doctor, if for example a temporary locum GP was doing appointments remotely online or on the phone. Fiona A, a semi-retired nurse, said: “I’m frustrated [and] hugely angry at…my doctors that have taken no responsibility at all for me…I have done DIY GP-ing [but for] people that don’t have any medical knowledge it must be awful.”
Sophie said she felt frustrated and angry because she got no support or follow-up from the GPs at her practice.
There were also some frustrations trying to work out whether the symptoms were indeed due to Long Covid or something else, including existing issues such as going through the menopause, past mental health issues, or diabetes which complicated the picture and made it hard to be sure what could be attributed to Long Covid. Sofia, who had an underlying health condition, commented “There’s not even any point going to the GP. First of all, they don’t even see you. And secondly, because of my condition they always refer me back to my specialist.”
People also sometimes worried about whether their GP had started to see them as over- anxious or demanding due to Long Covid. Some said that they knew that their anxiety could get consultations with GPs off on the wrong foot. Helen, a health researcher who had a long list of symptoms, was concerned that she might be branded the ‘hypochondriac lady’ when she phoned her practice.