Haringey Long COVID report highlights challenges of accessing health and care services

Long COVID has had a huge impact on people’s physical and mental health . We heard from Haringey people about the challenges of living with Long COVID, and the difficulties of getting a diagnosis and accessing appropriate health services and support.
Lonely Woman

Recent figures from the Office for National Statistics (ONS) show that the number of people living with Long COVID now stands at its highest level since records began to be collected, with as many as two million people, or 3.1% of the UK population reporting symptoms.

We aimed to capture local people’s experiences of Long COVID:

  • To identify any gaps in current service provision.
  • To improve local services to better help and support local people living with the condition.
Our report includes data from 21 Haringey residents who filled in an online survey, and 1-2-1 interviews with four Haringey residents who completed the survey.
I can’t exercise as my heart rate goes up and I get chest pain and feel so exhausted after a short amount of slow walking. I am so down a lot of the time, feel guilty for not working and sad about missing so many of my usual social activities. My relationship is suffering as I’m so down and not at all fun.
— Haringey Resident

Key findings and recommendations

Employment and finances

Findings

  • 15 out of 21 respondents (71%) said Long COVID had impacted on their ability to work or the number of hours they can work.
  • Two people were made redundant and one accepted voluntary severance (along with others in their firm who also had Long COVID).
  • Seven out of 21 respondents (33%) said their finances were affected.
Recommendations
 
  • Statutory services (Haringey Council, NCL CCG, and NHS Trusts) should model being a good employer for people living with Long COVID. Their HR departments should ensure reasonable adjustments are made, and flexible working arrangements explored, to ensure people can keep their jobs and continue to work.
  • Information, help and support should be provided to people living with Long COVID to ensure they are able to access any benefits they are entitled to.

Physical health

Findings
 
  • 16 out of 21 (76%) respondents said their physical health had been impacted by Long COVID.
  • They reported significant, wide ranging, multiple and severe physical health impacts. These included fatigue / exhaustion, stomach problems, heart palpitations, headaches, brain fog, aching limbs, insomnia, pain in muscles and bones, severe back pain, joint pain, decreased mobility, and loss of taste and smell.

Mental health

Findings
 
  • 14 out of 21 respondents (67%) felt an impact on their mental health and their ability to do things they enjoyed.
  • People reported feeling depressed and suffering from anxiety. This depression and anxiety was triggered by the illness itself as well as the consequences of the illness, such as reduced ability to work and earn money or access benefits.

People’s experience of Long COVID in Haringey

The problem of diagnosis
 
Findings
 
  • Looking at national trends, there should be more than 3,000 Haringey residents diagnosed with Long COVID. But currently there are only around 900 and most appear to be in the West of the borough. This points to a real problem of undiagnosed Long COVID in the more deprived East of the borough.
  • Some people experienced difficulty getting a diagnosis of Long COVID from their GP or clinician.
  • Seven of the 15 respondents (47%) stated their GP / Clinician had little or no knowledge about Long COVID. GPs lack of knowledge about Long COVID was a recurring theme.
  • Six of the 21 respondents (29%) had not sought medical care for their Long COVID symptoms. Reluctance or inability to seek help from the GP has been a general feature of the pandemic for many patients.
Recommendations
 
  • Explore and address the issue of undiagnosed Long COVID amongst Haringey residents, particularly focusing on the more deprived East of the borough.
  • More training for GPs so they are able to recognise Long COVID symptoms, provide a diagnosis, provide the patient with good quality information, and refer on appropriately.
  • More training for GPs so they can support Long COVID patients appropriately within primary care by giving them information about self-management techniques, helplines, local support groups etc.
  • Develop effective communications around Long COVID for the general public, raising awareness of what it is and encouraging them to seek medical advice and help.
Getting the right healthcare
 
Findings
 
  • People identified a need for better access to health services, both at primary care through GPs and at secondary care through Long COVID clinics.
  • 13 of the 21 respondents (62%) had experienced difficulties in getting appropriate healthcare support.
  • Self-management was found to be the single most helpful healthcare intervention. Self-management included diet, exercise (e.g. yoga), rest, fatigue management and pacing.
  • Most people found out about self-management techniques themselves. Only two people received information about self-management techniques from a healthcare professional. 7 People’s experience of Long COVID in Haringey
  • 15 of the 21 respondents (71%) had to do their own research on Long COVID. Patients did their own research due to the lack of support from the NHS, including unsympathetic GPs, ineffective advice, long waits for diagnosis and long waits for the Long COVID clinic.
  • There were very long waits for the Long COVID clinic or other services. In some cases people were waiting several months for a first appointment with the Long COVID clinic.
  • Some patients were not confident the Long COVID clinic could help them with the right tests or treatment.
  • People said they had to advocate for themselves and fight to access support from the NHS. Respondents were concerned that people from more deprived communities would not be able to fight for care in the same way and this was leading to inequity of service provision.
Recommendations
 
  • Develop effective communications around Long COVID for patients, raising awareness of what it is, and encouraging people to seek medical advice and help.
  • Develop effective patient information on Long COVID, and promote and distribute this to GPs. This should include information on self-management techniques, helplines, local support groups etc.
  • Patients diagnosed with Long COVID should be given information and advice on appropriate self-management techniques and resources, regardless of the 12-week NICE guidance which identifies ‘Post COVID syndrome’ as starting no earlier than 12 weeks after infection.
  • Develop Haringey based in-person and online peer support groups for people living with Long COVID.
  • Develop a phone helpline to provide information and support on Long COVID, so people do not feel so isolated.
  • Develop effective communications to promote the local support groups and services available for people living with Long COVID.
  • Ensure at the point a patient is referred for Long COVID support the Long COVID pathway is explained to them in an accessible way.
  • Ensure patients waiting for their first appointment with the Long COVID clinic at least get a phone call or an email providing good quality patient information on Long COVID e.g.. self-management techniques, helplines, local support groups, so they are able to access help and support whilst they are waiting.
  • Ensure all patients on the Long COVID pathway are clear about how they will be followed-up after their first appointment. y Ensure all patients on the Long COVID pathway understand how to contact the clinical team responsible for their care through phone and email.
  • Ensure there is more consistency in people’s experiences accessing the Long COVID pathway, taking into account patients’ physical, mental and social needs.
  • Continue to analyse and monitor Long COVID data for Haringey residents across localities and communities to help ensure Long COVID support and services are being accessed by all localities and communities in an equitable way.

Downloads

Read the Healthwatch Haringey Long COVID Report

People’s experience of Long COVID in Haringey - Haringey Long COVID Report, June 2022

North Central London Healthwatch Report

The Haringey research was part of a larger project with five Healthwatch in the North Central London area (NCL CCG).

The five Healthwatch organisations (Healthwatch Barnet, Healthwatch Camden, Healthwatch Enfield, Healthwatch Haringey, and Healthwatch Islington) spoke to over three hundred local people, via online surveys, 1-2-1 interviews and community focus groups. They described the different ways Long COVID has affected them, physically, mentally and socially.

Read the NCL CCG Healthwatch Report

Do you have Long COVID?

The Long COVID Support website has lots of information and resources.

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