People who experienced Long Covid in the early years of the pandemic have often found it difficult to get the right healthcare to support them whilst their lives were disrupted by Long Covid and to help them recover. Read about people’s experience of seeking help from GPs here and our section on seeking help from healthcare professionals. Here we talk about the messages that people had for healthcare professionals.
This page covers messages about:
- Organisation of health care for people with Long Covid
- Being listened to and believed by health professionals
- Honesty and openness in healthcare interactions about Long Covid
- Willingness to learn about Long Covid and to support those with it
Organisation of health care for people with Long Covid
It is known that Long Covid can affect many different bodily systems at the same time. One of the most common things that people told us about was the need for Long Covid healthcare to be more joined up.
Vonnie said that people needed information about Long Covid at an early stage and services should be ‘one-stop’ and brought together ‘under one umbrella’.
Xanthe summed this up by saying, “the issue is that everything is broken up.” Many people wished they could go to one service to see a whole range of specialists. They thought having a multidisciplinary team in one place would make it easier to access the right services for them and reduce waiting times for different specialists and tests. They pointed out that a joined-up service could also help to save precious energy and resources when people are already struggling to cope with the impact of Long Covid, including extreme fatigue and brain fog. As Xanthe said, people wouldn’t need to “waste more energy finding resources” or have to explain themselves “again, and again, and again”. Sara said a joined-up approach would help too because Long Covid is “so complicated”, and people need “some cross discipline proper observation”. Vonnie wanted a one-stop service and better information.
Grayson said it is important that people with Long Covid were not left to “fend for themselves”. He thought hospitals and GPs should have special Long Covid clinics.
In some parts of the country, people had been able to go to Long Covid clinics which have tried to bring care together in this way, but at the time of writing this was still not available everywhere. You can hear more about people’s experiences of Long Covid clinics.
Helen and Megan raised other issues about the organisation of care for people with Long Covid. Helen stressed how important it was to have at least some face-to-face appointments. She had found it difficult to only have remote consultations with her doctors and said, “it would be really nice for someone to just clap eyes on me in person”. Megan pointed out that “you’re not going to pick up a phone and ask for help if you don’t know how” and thought there were “loads more people like myself sat out there who don’t feel comfortable reaching out”. She suggested that more follow up from healthcare professionals was needed – “might need somebody just to pick up the phone and be like ‘How you’re feeling? It’s been a week’”. She said this would have helped her – “I’d have been like ‘actually no, I really need your help’”. Fiona B agreed that it would be good if doctors could “keep an eye on people’s health afterwards… there’s people I know who won’t go back to the doctors”.
Being listened to and believed by health professionals
The people we interviewed said how important it was to feel that they were being listened to by health professionals. For example, Anthony’s first piece of advice to healthcare professionals was to take people with Long Covid “seriously” and Ellen said, “I think it’s just having a better understanding and listening, because it is real and there is going to be more out there… going forward”. They also said people with Long Covid needed to be treated with kindness and compassion and that it was very important to feel that health professionals believed them, even when they were experiencing strange symptoms. They knew the NHS was under pressure in the early stages of the Covid-19 pandemic, but they also needed help when they felt that their lives had been turned ‘upside down’.
Tom said he appreciated the pressure the NHS has been under during the pandemic but said the lack of medical support had been ‘galling’.
Emily said it was important for healthcare professionals “to listen to the whole picture”. She used to take a list of symptoms to the GP and said she did not envy the positions GPs were in during the pandemic.
Adele stressed how important it is to be treated with compassion and to feel that people believe her when she talks about her symptoms.
Like Adele, Annabelle described how important it was for people with Long Covid to not to feel dismissed. She said “being listened to could be the most important thing. Listened to and not dismissed. Yeah, not being dismissed”. Charlotte said patients have “got to be listened to about their symptoms”, and Hannah wanted healthcare providers to be understanding, “accepting the fact that [their problems] are real, even if it doesn’t seem as bad to them and make sure you don’t dismiss them and listen to everything they have to say”. Lily thought “there’s a big cohort of medical professionals who maybe don’t believe in Long Covid as a thing”.
Our interviews suggested improvements over time in how healthcare professionals responded to people with Long Covid, reflecting greater awareness among doctors and other healthcare staff as the pandemic moved toward the end of its first year and beyond. Susan, who got Covid in late 2021, said she was ‘really grateful’ that her GP had been supportive and had kept in regular contact with her. Others appreciated health professionals diagnosing Long Covid quickly and following this up with a clear plan.
Iain felt that his GP was knowledgeable on Long Covid. He kept up to date with research studies and professional guidelines. He went through a flowchart with Iain to diagnose Long Covid.
Fiona B, who had help from her GP practice in January 2021, said their supportive and proactive response was crucial to her at that time. They recognised the signs of Long Covid immediately.
Sarah appealed to healthcare professionals to “not assume that one Long Covid patient is going to be the same as the next…it’s all about listening to that individual, what they’re experiencing and how they’re coping with it or not coping with it or whatever”. Susan appealed for “empathising and understanding” from healthcare professionals because living with Long Covid symptoms was “hard for people. And it really is a struggle”. Fiona B had felt fortunate that her young GP had listened to her right from the start. Susan, like many others including Ben, pointed out that people’s symptoms “vary so much”.
Fiona B said people’s Long Covid symptoms are “not one size fits all” so GPs “need to listen” and remember that “lots of people take a long time to go and see somebody”.
Ben’s messages for healthcare professionals included the importance of seeing people as individuals, having good communication between healthcare professionals, and explaining to patients why particular decisions were made.
Honesty and openness in healthcare interactions about Long Covid
In our interviews people also highlighted the importance of healthcare professionals being honest and open, even if this meant them being upfront about having limited knowledge about Long Covid or honest about limited treatment options. Lily, a doctor with Long Covid, summarised the difficult situation that patients with Long Covid have been in. She said, “We’re in a horrible situation with a thing that we don’t really understand that no-one really understands, that we didn’t know about two years ago, that we don’t have any treatment for or any prognosis for”. Adele’s message as a doctor with Long Covid was that “it comes back to compassion… and having an interest, wanting to understand what is going on, rather than just put things in boxes that [already] exist”. Faatimah and Jennifer thought that doctors needed a very open mind about Long Covid.
Faatimah’s most positive experience was with a doctor who listened and was “really open … just trying to help me go through the journey, trying to figure out what was wrong”.
Jennifer believed doctors need an open mind about the therapies and treatments that could help people with Long Covid because “it’s not a normal thing. It doesn’t fit in their boxes”.
The newness of Long Covid and the wide range of unpredictable symptoms it can cause has left many people with Long Covid living with great uncertainty. They have not known when, or even whether, they will get better. Lily said, “It’s a hard situation to be in as a patient because… you don’t know how things are going to pan out… you don’t know what five years’ time, ten years’ time, twenty years’ time looks like… and that’s a really strange situation to be in”.
Several people told us it was important that doctors and healthcare staff were honest about what they knew and did not know about Long Covid. People didn’t expect all doctors to be expert in Long Covid yet because the condition is still new. Frances said, “If you don’t know, say you don’t know and try to point to people who might know”.
Judy had very positive experiences with the occupational therapist she had seen. She listened and gave practical advice and was very willing to learn.
Shaista appreciated her GP explaining that Long Covid affects everyone differently. He gave her clear advice on how to manage her fatigue and referred her to a Long Covid clinic.
In the face of all the uncertainties about Long Covid, some people were looking for reassurance from their doctors. Frances thought it “must be really hard as a health professional to not have the tools to be able to fix stuff”. She still thought that it was helpful to offer some hope “just saying ‘Other people feel like this, and it will get better’” is helpful. Lily recognised that a doctor might feel “really bad” at not being able to offer help and would “probably find it quite a lot harder” to deal with a “massively unknown quantity”. On the other hand, people didn’t want ‘false’ reassurance or promises.
Anthony thought it was hard for doctors to get the right balance between being realistic about the limited options for treating Long Covid, but still “offering hope to people”.
Golda appreciated a cardiologist being straightforward about not being able to have answers for her. She didn’t want doctors to make false promises in their efforts to be reassuring.
People often talked about how important it was for healthcare professionals to recognise that being ill with Long Covid could have a bad effect on people’s mental health, but not to assume that all their symptoms could be ‘just’ put down to anxiety or depression. Michael said healthcare providers needed to show they believed something was wrong, even if they didn’t understand what it was.
Michael, a young man in his 20s, said doctors need to believe there is a biomedical cause for how people with Long Covid are feeling. They also need to have the confidence to be honest and say, ‘I don’t know what’s wrong.’
Lily added “understandably quite a lot of people are quite low about it”. They needed healthcare professionals to recognise that Long Covid was a physical illness.
Felix said the most important thing for him was for healthcare professionals to recognise Long Covid as a physical illness, whilst understanding that having the condition could make people feel really depressed.
Jennifer found a GP at her practice with a special interest in Long Covid. She said it was important that health professionals were not dismissive of Long Covid or keen to attribute symptoms to other causes, such as anxiety.
A doctor speaks – Helen Salisbury discusses what health professionals can do
Willingness to learn about Long Covid and support those with it
People also said it was important that health professionals were curious about Long Covid and interested in helping people with it. They felt that they should be supported by the health services and not left to deal with their symptoms on their own. Ben had a very positive relationship with his GP, and he described himself as “working with the GP” and “co-experting” – with Ben as the expert in his own symptoms while his GP knew more about how to treat them.
Similarly, people also said it was important that health professionals were open to the possibility that new symptoms or conditions had been caused by Covid. Annabelle believed that changes in her thyroid function started when she had Covid, but her GP had not acknowledged this, which she said “[didn’t] feel particularly supportive”.
Grayson wanted doctors to be “professionally curious” about Long Covid. Because Long Covid is still “relatively uncharted territory”, he said “it’s OK to say you don’t know”.
Judy thought that healthcare professionals may need to stress the importance of taking time to get better, “maybe saying ‘Hey this is a thing which might hit you quite hard and it’s worth taking time off…. Take time, recover, try and recover as much as you can’”.
You can read more about the messages that teenagers or the parents of children with Long Covid had for health care professionals HERE (CROSS REF TO LCIF MESSAGES FOR HEALTHCARE PROFESSIONALS).