Experiences of long Covid clinics and other specialist services for Long Covid

This page covers:

  • The availability of Long Covid clinics
  • Getting referred to Long Covid clinics
  • Experiences of attending Long Covid clinics
  • Other specialist services for Long Covid

The availability of Long Covid clinics

Many of the people that we interviewed said that Long Covid clinics should be available to everyone with Long Covid in all parts of the UK. They thought that people with Long Covid symptoms should be able to go to a service which includes a range of specialists. One of the people we interviewed, who was a doctor herself, thought that this should include specialists in neurology, cardiology, respiratory medicine, physiotherapy, occupational therapy, and psychology.

Jennifer was using private healthcare services to create her own version of a Long Covid clinic because there were no long Covid clinics in her area.

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.

Getting referred to Long Covid clinics

Some people we spoke to lived in areas where Long Covid clinics had been set up. Often people had been referred by their GP, but a few had been able to self-refer. In some cases people were told they needed to have had their symptoms for at least 12 weeks to be referred and waiting lists for Long Covid clinics could be very long. For example, Shaista’s GP had referred her in January but when she was interviewed in June, she was still waiting for an appointment.

After having symptoms for 12 weeks, Ellen was able to self-refer to a Long Covid clinic in her area. It had a very long waiting list and she wondered whether she would ever get an appointment.

People also told us about having to chase up their referral because they had been waiting for several months for an appointment. When people got their appointments, some told us about breakdowns in communication which meant their first appointment didn’t go ahead. Golda waited three months for an appointment and, after asking about the wait, was given a time for a telephone consultation. When no one called her at the appointment time, she felt really stressed – “I literally almost had a nervous breakdown” – and then very angry to learn that “patient no-show” had been added to her records.

Golda said she had to “push her way in” to a Long Covid clinic and the process had a negative impact on her mental health.

Razia’s Long Covid clinic referral had not been a smooth process and due to misunderstandings in communication she missed her first assessment appointment.

The Long Covid clinic called Faatimah when she was asleep and didn’t leave a number to call back. She hoped to rearrange an appointment but doubted the clinic would be able to tell her anything new about managing her fatigue.

Access to Long Covid clinics can depend on where you live. Despite being referred to a clinic by several health professionals, Vonnie said she’d had to write to her MP before she got an appointment. She felt that there were others who had “only been ill a few months [and] they’ve got themselves onto a Long Covid clinic” and she wondered if this “was a postcode thing.” Poppy said it was “frustrating” that she lived so close to the “best Long Covid clinic anywhere” but couldn’t be referred to it because she lived “a few feet the wrong side” of the city.

A doctor speaks – Helen Salisbury discusses why people might like to attend a Long Covid clinic.

Experiences of attending Long Covid clinics

We heard from people about a mixture of experiences of going to Long Covid clinics. Richard said his expectations had been low: “I didn’t see the point [and thought] this is a waste of time.” But after he had been to the Long Covid clinic, he described himself as being “really quite impressed” by the physiotherapist and occupational therapist he saw. He said they “knew a lot about the research.”

We spoke to people who found their appointments useful. Xanthe said the health professionals at her clinic were “very nice, very understanding and have not gas-lit me at all.” Kate said that a “good outcome” of her Long Covid clinic appointment was meeting four other people with Long Covid. She had been keeping in touch with them online every week. People appreciated having access to a range of specialised tests through the clinic. Sara said, “They did a proper lung function… at least they managed to find… something measurable, [and the lung specialist] found me the right inhaler.” Some were referred on to other services by the Long Covid clinic. Others, like Sarah below, had not been referred anywhere else and had not had any more follow-up after an initial telephone consultation.

Anthony had 3 or 4 telephone consultations with a Long Covid clinic. He described these as “really helpful” because they introduced him to ways of coping with the condition by managing his energy levels.

After an initial triage call with the Long Covid clinic, Fiona B was then referred to a clinic to help her deal with brain fog. At the time of interview, she was waiting for an appointment with them.

Sarah described her first telephone consultation with the Long Covid clinic specialist nurse as cathartic. However, there was no follow-up appointment or referrals and her GP suggested that chasing this up wouldn’t be worthwhile.

Others were less positive about their experiences. Poppy said, “They’ve done the basic blood tests… but they’ve not looked any deeper.” Lucy was diagnosed with PoTS (Postural tachycardia syndrome – an abnormal increase in heart rate that occurs after sitting up or standing) through the Long Covid clinic and referred to a physiotherapist who knew very little about the condition. This left her feeling like she had little support. Lily, a doctor herself, felt the Long Covid clinic she was referred to was designed to be “as non-medical as possible” because they could not refer her to get her heart symptoms investigated. She was told “We can refer to dietician and chronic fatigue service and do some in-house rehab,” but Lily felt that wasn’t a useful service.

Lily felt she only got the medical conversation that she wanted from the Long Covid clinic because of her medical background and because she “pushed and pushed and pushed.”

Other specialist services for Long Covid

As well as telling us about Long Covid clinics, the people we interviewed spoke about their experiences of other specialist services which had been designed or adapted to help people with Long Covid. Michelle praised a Long Covid self-management course she had gone to: “It’s like, ‘You understand Long Covid, you understand me, now you see what I’m going through,’ and they just, kind of, got it, and it was like a curtain had been lifted.” Judy had attended an existing NHS service which was accepting patients with Long Covid. She told us how this had helped her. Susan was referred by the Long Covid clinic to a rehabilitation programme. Lynne had a very negative experience when she saw a Long Covid specialist who travelled to her area to see patients.

Judy had very positive experiences with the occupational therapist she had seen. She listened and gave practical advice and was very willing to learn.

As part of a Long Covid rehabilitation programme, Susan was in contact with an occupational therapist. She hoped that they would help her to arrange her return to work with her employers.

Lynne was “devastated” when a consultant from a Long Covid clinic suggested her difficult respiratory symptoms were “all in her head.”

Lily’s workplace, a hospital, had set up a rehab programme for employees but Lily felt the usefulness of this varied depending on who was running the sessions and how much they understood about Long Covid and the impact of over-exercising. Hannah’s clinic had referred her for workshops designed for people with Long Covid, but she didn’t find them helpful for a number of reasons.

Lily experienced an absolute crash after pushing herself too far in a physio-led rehab programme session.

Hannah felt she already knew what she was told in the Long Covid workshops but needed to keep attending so she could say “These didn’t help at all; what’s next?” Some advice wasn’t helpful because of her age.

Others we spoke to had attended a free but privately run gym-based programme which was developed for people with Long Covid. Maria said she saw “notable improvement” in her strength and fitness as a result of the programme and meeting other people on it had validated her experiences.

Ben described the trial gym programme which helped him to make progress with some of his physical symptoms. He benefitted from the one-one support and individualised goal setting.

Lynne said the gym programme “made a big difference” to her. This was because it helped her to see improvements that were happening.

Christian and Anthony were positive about taking part in a programme called Breathe which was run by the English National Opera. This programme is designed for people who are still experiencing breathlessness after having Covid.

Anthony benefitted from taking part in the 6-week English National Opera Breathe programme. It helped him relax and manage his breathing.

You can read more here about the messages people had for health care professionals.