Clare Rayner is a retired occupational health doctor who caught Covid-19 in March 2020. Clare has since worked with medical colleagues to raise awareness of their concerns associated with prolonged symptoms, also referred to as Long Covid. They have also contributed to the NHS England (NHSE) Long Covid Taskforce as patient/patient group representatives.
One year on from her initial infection, Clare draws on personal and professional insight to explain why people living with Long Covid continue to feel let down, abandoned and frightened.
Unable to access hospital care and tests
Between March and September 2020, there was blanket NHS order to hospitals, ambulances, GPs, 111 not to admit anyone to hospital unless they were ‘blue around the lips’ or unconscious. If you talk to people with Long Covid, you will find many were very ill during this time but turned away by all health services. This led to many being inaccurately labelled ‘mild' because not admitted.
At the start of the pandemic, testing was not widely available and evidence showed a high false negative rate. Despite this awareness, many people suffering long term symptoms have been told that they could not have had Covid if they had not had a positive test result. Consequently, many people with Long Covid have since faced numerous barriers when trying to access medical help. Some have had multiple A&E attendances with frightening symptoms like chest pain and fast heart rate, to be told they were suffering from anxiety.
The announcement of Long Covid clinics brought hope
In September 2020, the Royal College of General Practitioners called for a national network of "post-Covid" clinics to be set up. In October, NHS England released a 5-point plan for Long Covid.
The announcement stated that Long Covid clinics would:
“…involve each part of the country designating expert one-stop services in line with an agreed national specification. Post-covid services will provide joined up care for physical and mental health”.
In December, an NHSE press release stated that 69 clinics were already operating.
Many people were very ill, developing new problems, and had been unable to access a health professional. But the announcement gave them a sense of hope, and relief that their experience was finally being recognised and responded to.
Back then, it was estimated 60,000 patients would need to use the service. The latest statistics (April 2021) from the ONS indicate there are now more than 1 million people living with Long Covid in the UK.
Reality of ‘clinics’: not as promised
In January 2021, NHSE renamed the clinics ‘assessment services’ and since then, much of the hope sparked by the initial announcement has faded for a number of reasons.
- A patient survey (presented to NHSE by Long Covid Support), has found that 74% of Long Covid patients struggled to secure referrals to assessment services since publication of the clinical guideline and list of clinics
- Many were offered only a telephone call (with no medical examination), or a physiotherapy referral - neither of which reflect the full spectrum of symptoms or the original promise of a ‘one-stop’ service
- Many patients without a positive test result or previous hospital admission have been denied referrals (despite guidance clearly stating neither should be a requirement)
- Some areas have no Long Covid support service at all, despite the original terms of reference stating the services would be available in ‘every part of the country’
- Two clinics listed as open have been admitted in writing that they are not.
The virus affects every organ in the body by causing inflammation in blood vessels. As in hospital patients, there are blood clots, oxygen lack and inflammation. Some of the common problems are heart-related, cognitive and neurological (including pain). There is a big hit to autonomic nervous system. People are more debilitated than with other viruses and seem to need much slower rehabilitation.
We are concerned about serious problems which have been missed. Shockingly, blood clots in lungs and brain, and heart inflammation are being discovered at 13 months post initial infection, after months of pleading to be seen. We are worried about possible long-term effects of late diagnosis and the failure to give known treatments for symptoms.
Devastating impact on lives
The impact of these prolonged symptoms on people’s lives is enormous. Those living with Long Covid have difficulty with daily activities, due to viral effects on the brain and body. Many are unable to work or to look after themselves or their children. These are huge daily concerns for people. Many know something is very wrong in their bodies and are frightened that their level of functioning is not improving.
Too many people living with Long Covid do not feel they have been offered any support, and are distressed, frustrated and confused from being sent pillar to post. This seems particularly cruel as most people with Long Covid have some cognitive impairment.
They feel duped; the clinics promised have not materialised. This affects trust. They feel abandoned by the health services, and angry at being told that it is all anxiety. People accepted (to their detriment) the initial ban on attending hospital but not the continued blockages since.
What needs to happen?
People who are ill need urgent ‘one-stop’ shop assessment services, to be screened for Long Covid problems and red flag symptoms.
- Access to relevant specialists should be straightforward.
- Patients should no longer face disbelief or labelling.
- Symptoms which can be treated (eg pain, high heart rate, angina) must be treated early to relieve suffering.
- Blood clots need to be identified and treated urgently.
- GPs and specialists need urgent education, including how to manage autonomic problems.
Early treatment leads to earlier recovery and prevents complications. This can also help people to return to work. It is a duty of all healthcare professionals to stop early damage becoming worse.
One year later, we are still saying the same things. Who is listening?