'Abandoned by the health system': Long Covid patients speak out

A woman blowing her nose

People living with Long Covid in north London has spoken out about the way the illness has affected their lives - Credit: PA

A major new study has found that north Londoners living with Long Covid are finding it hard to access health care support. 

Local Healthwatch groups from North Central London (NCL) teamed up to conduct the research, which captured the experiences of more than 300 Long Covid patients.

One of the largest surveys of its kind in London and the south east, this research follows figures recently released on this issue by the Office for National Statistics (ONS).

The ONS data showed that one in every 37 people has had Long Covid - a post-viral syndrome which can persist for weeks or months after an initial bout of Covid.  

The survey - conducted by Healthwatch groups in Camden, Haringey, Islington, Barnet and Enfield - found that 51 percent of sufferers experienced difficulties in accessing support. 

People in the UK with self-reported long Covid for at least a year. See story HEALTH Coronavirus Lon

People in the UK with self-reported long Covid for at least a year - Credit: Press Association Images

One Camden student, Emma, described feeling like a "nuisance" after developing the illness. 

Despite her symptoms leaving her unable to leave the house or complete university tasks, Emma's blood tests came back normal and doctors were reluctant to look further into her case.

Most Read

Using her own research, the student has since found ways to manage her Long Covid.

However, she feels let down by the professionals: "Everyone should have a doctor who would test, refer and explore everything."

Meanwhile, the survey revealed how it took four months or longer for more than half of respondents to receive a diagnosis. 

Forty eight pc felt their GP had little or no knowledge of the symptoms and effects of the condition, while 73pc claimed they had to do their own research. 

Beeja, a north London resident in her 70s, said she felt "abandoned by the health system" after developing Long Covid. 

“[The doctors] would say we don’t know enough about it, there’s not enough research.

"But I know there is research, at least to the point where they can recommend some basic advice like vitamins. They had no tools in their toolbox."

Healthwatch groups are now calling for action to improve care and treatment for people with the ailment.

People with the condition report a wide range of symptoms - including fatigue, shortness of breath and brain fog - which can persist for months.

List of Long Covid symptoms

People with Long Covid suffer from a wide range of symptoms, which persist for weeks or months after contracting Covid - Credit: Archant

The illness also affects mental health, said respondents, many of whom reported having lower self-esteem and confidence, increased anxiety, low mood and depression. 

“I have become a shell of a person,” said one Camden resident.

Some of those questioned had to reduce their working hours or even give up their jobs entirely. 

Others were made redundant, with one Islington resident losing their job after 25 years. 

Nitish Lakhman, manager of Healthwatch Barnet, said: “NHS staff have had to learn about this new condition quickly and under incredibly difficult circumstances due to the pressures of the pandemic. 

The manager described how a Long Covid patient pathway, developed by the North Central London Clinical Commissioning Group (NCL CCG) has aided the recovery of many people experiencing the illness. 

"However, the data we have gathered shows there are lessons to be learnt from the experiences of Long Covid patients, who have had to become experts by experience, to help them on the road to recovery," Ms Lakhman added. 

The NCL Healthwatch are making a series of recommendations, including increased training and support for GPs so they can be better informed.

Dr Katie Coleman, clinical lead for Primary Care Network Development, responded on behalf of the NCL CCG. 

She said: "We are proud of the work that our colleagues across NCL have done to set up holistic Long Covid services in such a short space of time, and of the commitment to patient care shown by staff working in these new services.

"However, as this report reminds us, we have more work to do to make sure we provide the best possible care."

To read more about the experiences of five Camden residents with Long Covid, visit this link.

A list of Long Covid symptoms can be found here

Support is available at yourcovidrecovery.nhs.uk or gov.uk/guidance/find-help-and-support-if-you-have-long-covid