This page covers:
- Being referred to specialist NHS services
- Using private health care to access specialists
- Further investigations that people would like for Long Covid
Read more about people’s experiences of Long Covid clinics.
Being referred to specialist NHS services
Several people told us about being referred by their GP to have symptoms investigated by specialist NHS services, such as cardiology (for heart conditions) or neurology (for conditions affecting nerves and the brain). They said there could be long waiting lists for tests and the results of tests were not always clear or helpful. Sometimes they were left uncertain about what was wrong and how to manage their symptoms.
Judy spoke of long waiting times for tests. She realised that she needed to contact her GP for test results and found this unhelpful alongside managing her symptoms.
Iain felt both relieved and frustrated when he received numerous negative test results.
People said that they were often referred to specialists so that they could have tests which would hopefully rule out other illnesses and to “double-check… there’s nothing else going on” (Grayson). Being referred to specialist NHS services was generally seen as positive but could make people concerned about what tests might show. When people had to go separately to several different specialists, they could feel like they weren’t being treated in a coordinated way.
Sarah’s GP referred her to a neurology specialist “just to check there’s nothing else going on”. Although her GP was reassuring, Sarah said she was concerned by them checking if anything is wrong with her brain.
Michelle was referred to several specialists. She felt they were dealing with symptoms individually rather than treating them together as Long Covid.
It was often only after getting several negative test results that people were told they were likely to have Long Covid or that their symptoms were due to damage caused by Covid-19. Grayson, for example, experienced ongoing hip pain since his Covid-19 infection. He said that among the specialists he had seen “the general consensus, in the absence of any other theory, is that [the inflammation] remained in the [hip] muscle sheath from my Covid infection”. Similarly, Shaista’s GP told her that she had “post-infectious Covid” after her tests (x-rays, blood tests and a heart scan) were all normal.
Few people were prescribed treatments as a result of specialist investigations and tests, but Laurie was prescribed a drug after attending a cardiology clinic for her tachycardia (faster than normal heartrate). She said that her symptoms improved after being vaccinated for Covid-19 and she was able to stop taking this drug.
Using private health care to access specialists
Some people had used private health care to get access to specialists or tests, although not everyone could afford to do this. Sometimes this was arranged through people’s work. Going privately helped people to see specialists more quickly but didn’t always mean that people got answers or a treatment plan. Jennifer used her healthcare insurance to see a cardiologist, a breathing specialist, a rehabilitation physiotherapist and to attend a course about how to balance activities and resting, often known as pacing. Tom had seen several specialists privately. Judy found a private fatigue specialist.
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.
Tom had been able to see specialists using private medical insurance through his work. He had mixed experiences with the specialists he saw but praised the occupational therapist that he had been in touch with through work.
Judy said she felt like she had been on a confusing rollercoaster with her Long Covid. Seeing a chronic fatigue specialist had given her hope and a belief that she will get better in time.
People wondered how long they would have had to wait for specialist help, especially when the NHS was under so much pressure, and they knew that other people may have had to wait much longer. Annabelle recognised that she may need to pay for private health care to get more detailed investigations into her thyroid hormone levels. Charlotte felt that the private consultants had more specialist knowledge of her PoTS symptoms (Postural tachycardia syndrome – an abnormal increase in heart rate that occurs after sitting up or standing) than the NHS doctors she had seen.
Annabelle was planning to pay for a full set of thyroid blood tests and she was considering seeing a specialist in hormone-related conditions privately.
Charlotte compared the NHS and private doctors that she had seen. She felt that private consultants had “been more willing to put their neck on the line and say, ‘I think it’s this’”.
Xanthe estimated that she had spent around £6,000 on private healthcare, including paying to take a private “brain training programme… about understanding the relationship between the brain and the nervous system [and] very gently helping it to rebalance”.
Further investigations that people would like for Long Covid
In our interviews people talked about investigations that they would have liked for their symptoms but hadn’t been able to get. A few people were very specific about what investigations they wanted, and others spoke more generally about how it would be reassuring to have a full post-Covid check-up.
Fiona A was a semi-retired nurse whose medical knowledge meant she had an understanding of blood test results. She wanted her kidneys to be checked because of changes she had noticed in her blood results.
Sophie wanted a “body check” to investigate her lingering symptoms and reassure her that it is safe to increase her activity levels. She doubted that this would be available through the NHS.
Mahabuba was in favour of full check-ups for people who have ongoing symptoms after Covid and she thought this could be cheaper for the NHS than lots of individual visits.
You can read more here about the messages people had for health care professionals.