Long COVID patients speak out to Healthwatch Barnet and their North Central London colleagues

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Healthwatch Barnet has published a major new report into Long COVID and its impact.

The team worked jointly with Healthwatch colleagues in North Central London – Healthwatch Camden, Healthwatch Enfield, Healthwatch Haringey, and Healthwatch Islington and more than 300 people with Long COVID shared their experiences.

The report reveals a devastating impact on their 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 long-term effects on their mental health including lower self-esteem and confidence, increased anxiety and low mood, and depression.

“I have become a shell of a person”

said one interviewee.

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 Islington resident lost their job after 25 years.

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

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

Nitish Lakhman, Manager of Healthwatch Barnet, says:

“NHS staff have had to learn about this new condition quickly and under incredibly difficult circumstances due to the pressures of the pandemic, and 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 the experiences of Long COVID patients, who have had to become experts by experience, to help them on the road to recovery.”

Healthwatch Barnet and their colleagues 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”

says Lakhman.

“We are calling for better awareness of the condition and the available support through a multi-platform communications campaign. We look forward to working with the NCL CCG Long COVID teams to improve the experiences of patients with Long COVID.”

On behalf of NCL CCG, Dr Katie Coleman, Clinical Lead for Primary Care Network Development said:

“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. For health and care staff, the uncertainties of Long COVID, how many people it affects, and how to best care for them, has also been challenging. 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 for all NCL residents. The feedback and the recommendations in the Healthwatch report will be an important tool to help us do this.”

Download the full report:  North Central London Long COVID report

 

 

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