300 local people talk to Healthwatch about their experiences of the condition
By Nitish Lakhman, manager Healthwatch Barnet

Long COVID is having a massive impact on the lives of local people.

Here at Healthwatch Barnet we have just completed a major new report into the condition and its effects. We worked jointly with Healthwatch colleagues in North Central London – Healthwatch Camden, Healthwatch Enfield, Healthwatch Haringey, and Healthwatch Islington, with more than 300 people with Long COVID sharing their experiences.

The report reveals a devastating impact on local people’s mental, social and financial wellbeing as well as long-term effects on their physical health.

Alongside recognised symptoms such as fatigue, ‘brain fog’ and shortness of breath, respondents described feeling increased anxiety and low mood, and depression: “I have become a shell of a person” one interviewee told us.

Some of those questioned had to reduce their working hours or even give up their jobs because of the effects, while others were made redundant. One respondent to our survey lost their job after 25 years.

Their problems were exacerbated by difficulties accessing the healthcare system, with challenges in receiving diagnosis and referral, and a lack of knowledge of Long COVID among GPs common:

55% of people questioned reported it took 4 months or more to receive the diagnosis
48% of people questioned felt their GP had little or no knowledge about the symptoms and effects of Long COVID
73% of people questioned had to conduct their own research into the condition
51% of people questioned had difficulties getting appropriate healthcare support for Long COVID, e.g., referrals to community teams, hospitals and the specialist Post COVID Clinic

NHS staff have had to learn about this new condition quickly and under difficult circumstances due to the pressures of the pandemic. The Long COVID patient pathway, developed by the North Central London Clinical Commissioning Group (NCL CCG) has aided the recovery of many people experiencing this debilitating illness. However, the data we have gathered shows there are lessons to be learnt from Long COVID patients, who have had to become experts by experience.

We are making a series of recommendations, including increased training and support for GPs so they can be better informed on Long COVID and its symptoms. We want patients who are diagnosed with Long COVID or referred for further support to be given immediate access to self-care and self-management resources. We are calling for better awareness of the condition and the available support through a communications campaign.

We look forward to working with the NCL CCG Long COVID teams to improve the experiences of patients with Long COVID.

Dr Katie Coleman, clinical lead for primary care network development, says that the feedback and recommendations in the report will be important in helping them provide the best possible care for all NCL residents. She says: “There is still much we don’t understand about Long COVID, and we know that for people affected, this uncertainty can be hard to deal with. We also recognise that for many, getting access to support, a diagnosis and clinical care, at a time when clinicians are still learning about this new condition themselves, has been difficult.”

Dr Coleman adds: “For health and care staff, the uncertainties of Long COVID, how many people it affects, and how to best care for them, have also been challenging. We are proud of the work 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 for all NCL residents.”

You can read the North Central London Long COVID report in full on the Healthwatch Barnet website.

No news is bad news

Independent news outlets like ours – reporting for the community without rich backers – are under threat of closure, turning British towns into news deserts.

The audiences they serve know less, understand less, and can do less.

If our coverage has helped you understand our community a little bit better, please consider supporting us with a monthly, yearly or one-off donation.

Choose the news. Don’t lose the news.

Monthly direct debit

Annual direct debit

£5 per month supporters get a digital copy of each month’s paper before anyone else, £10 per month supporters get a digital copy of each month’s paper before anyone else and a print copy posted to them each month. £50 annual supporters get a digital copy of each month's paper before anyone else. £84 annual supporters get a print copy by post and a digital copy of each month's before anyone else.