The research examines the unmet healthcare needs of marginalised communities in Greater ���۴�ý during the pandemic and how community-based organisations and networks stepped up to help address these challenges.

Led by researchers at the University of ���۴�ý and the National Institute for Health and Care Research (NIHR) Applied Research Collaboration Greater ���۴�ý (ARC-GM), the study highlights the frustration, fear and loss of faith in the healthcare system from people within these communities, who felt they were not supported sufficiently by mainstream services.

VCFSE organisations and community networks mobilised to meet health and wellbeing needs, such as providing food and care packages to vulnerable households, food bank services, support for people experiencing homelessness, and online support groups.

The research found that these community-based approaches were deemed crucial to the success of the vaccination drive thanks to the unique position to reach members of diverse communities to boost uptake of the vaccine.

These efforts included VCFSE group helping run vaccine pop-up sites in community spaces, such as mosques and other religious sites, children’s centres, and local specialist charities such as refugee and sex worker charities.

The findings suggest that the support delivered by the VCFSE sector remains under-recognised and under-valued by the health system and decision-makers, and has prompted calls for more inclusive, community-driven solutions in future health crises.

Lead author Stephanie Gillibrand from The University of ���۴�ý and NIHR ARC-GM, said: “The important contribution of community engagement initiatives during the pandemic and vaccine rollout is made clear in this study. Not only did VCFSE organisations and community-led networks provide significant health and wellbeing support to people across Greater ���۴�ý, but they also played a pivotal role in building trust within hard-to-reach communities to help boost vaccine uptake.

“The value of this work needs to be recognised and learned from so steps can be taken to remove the current barriers within the health system that are stifling effective joined-up working with VCFSEs.

“Our study underscores the need to create a broader, more inclusive system which allows and promotes cross-sector collaboration, with flexibility and adaptability at the heart of future service delivery.

“With the right mechanisms in place, there is real potential to harness capacity to tackle inequalities and build trust through shared learning and greater collaborative working.”

The qualitative study, which is published in , drew insights from interviews and focus groups with people from local marginalised communities, health and care system stakeholders and VCFSE representatives.

Community participants involved groups that had been disproportionately affected by the COVID-19 pandemic in England, including ethnic minority groups, young adults, and those with long-term physical and mental health conditions.

During the research, concerns were raised about inability to access health services during the pandemic, including GP and specialist services. Participants also described their fear of catching the virus if they did attend healthcare settings, as well as fear of insufficient care due to well-publicised pressures in NHS settings. 

The study also found that:

• Participants felt strongly that this increased support provided by the VCFSE sector and community networks remains under-recognised and under-valued by the health system and wider public.
• Operational and logistical barriers created dissonance between communities and the system. This included difficulties with decision-making and power-sharing between VCFSE and commissioning or clinical organisations, organisational cultural clashes, red-tape and bureaucracy, and complex systems and power structures to navigate.
• Health systems should engage with the full breadth of the VCFSE sector, encouraging the involvement of smaller scale and less formal organisations as partners.
• Traditional health and care partners such as the NHS and local authorities should consider how their ways of working may need to change to foster full VCFSE inclusion on an equal standing.

in BMC Health Services Research at: https://bmchealthservres.biomedcentral.com/articles/10.1186/s12913-024-10921-4#Abs1

Research led by University of ���۴�ý academics funded by the National Institute for Health and Care Research (NIHR) Applied Research Collaboration Greater ���۴�ý (ARC-GM), examined the attitudes of people from minoritised ethnic groups, young adults and those with long-term physical and mental health conditions toward the COVID-19 vaccination programme.

Researchers found that a “perfect storm” of marginalisation and experience of structural inequalities led to distrust of the COVID-19 vaccination drive – and that marginalised communities felt ‘left behind’ by policy and decision-makers prior to and during the pandemic. 

The study, which is published , concludes that wider social inequalities, combined with experiences of marginalisation and discrimination, have long-lasting and widespread implications for vaccination uptake and health outcomes.

During the pandemic, Greater ���۴�ý experienced higher levels of mortality from COVID-19, higher case rates and greater impacts to productivity than the national average – with disproportionately high COVID-19 mortality rates in the most deprived areas and amongst Black African, Pakistani and Black Caribbean groups.

For some study participants:

• The choice to not have the vaccine became almost a metaphor for political dissent against institutionalised failures.
• Elements of distrust appeared to be established prior to the pandemic – and enhanced due to intensified episodes of racism experienced over the course of the pandemic.
• Feelings of distrust were emphasised via the perceived mishandling of the pandemic by the government and paradoxical government policy-responses to aspects of the pandemic, including U-turns and mixed public messaging.
• Culturally insensitive public messaging and practices during the pandemic heightened longstanding and widespread disenfranchisement.
• Longer-term injustices were perceived to be further intensified during the COVID-19 pandemic - links were made between long-term failings for underserved communities and the disproportionate impact of the pandemic.
• Pushback against the vaccine was articulated via a sense of establishing boundaries against an oppressive system.

Stephanie Gillibrand, Research Fellow at The University of ���۴�ý, said: “Existing research in this area tends to focus on the psychological or socio-economic factors that influence an individual’s uptake of vaccination. We sought to understand the complexities around vaccination motivations, exploring broader social and historical contexts or people’s experiences of marginalisation.

“We found that wider social inequalities, intersecting with experiences of marginalisation during the pandemic, have long-lasting and widespread implications when it comes to vaccination – and public health policy must recognise this broader context for future public health crises and vaccination drives..

“These implications may already be apparent, where new data has suggested that MMR vaccination rates are at a ten-year low since the start of the pandemic, and other childhood immunisations rates have also fallen.”

Navigating the Long Haul: Understanding Long Covid in Northern England, published by Health Equity North, reveals the striking inequalities in Long Covid rates and a clear North-South divide.

Analysis of General Practice Patient Survey data from 2022 found the North West had the highest number of people reporting Long Covid symptoms (5.5%) followed by the North East and Yorkshire (5.1%).

In some northern GP practices as many as one in five patients (20%) reported having Long Covid.

The regions with the lowest rates were the South West (3.4%) and the South East (3.6%), and the average for England as a whole was 4.4%.

The research suggests that people in the North of England are among the worst affected by Long Covid, which follows patterns evidenced in previous highlighting the devastating impact of Covid-19 across northern regions.

The link between deprivation and higher rates of Long Covid is also explored in the report. Nationally, the prevalence rate in the most deprived areas (6.3%) is almost double that in the least deprived (3.3%).

Within region inequalities are also evident in the North East and Yorkshire, where rates in the most deprived areas (8.3%) were 5.2% percentage points higher than in the least deprived areas (3.1%).

The report, a collaboration between Health Equity North, Newcastle University, University of ���۴�ý, Insights North East, Public Health South Tees and Healthworks, explores the impact of Long Covid on the health, wellbeing and employment prospects of adults living in northern England.

The findings have prompted calls for more research into Long Covid and for Government to undertake a consultation with Long Covid patients to better understand the condition and to implement care plans to facilitate rehabilitation and management of the condition.

Further findings from the report include:

• In England, 1.9 million people were experiencing a myriad of self-reported Long Covid symptoms as of March 2023, with 79% saying it has had a negative impact on their day-to-day activities.
• Fatigue was named as the most experienced symptom, and over half reported reduced functionality in their everyday activities, which resulted in their inability to return to work.
• The 10 GP practices with the highest prevalence of Long Covid were all in the North.
• While many employers in the North provide support for Covid-19, this is specified on an acute basis, rather than in response to later Long Covid/post Covid illnesses.
• Only three out of 10 northern employers contacted offered a specific rehabilitation package to employees living with Long Covid despite the high prevalence in the region.
• There is considerable evidence of socioeconomic inequalities in Long Covid in the North East and Yorkshire, where rates in the most deprived groups (8.3%) were 5.2 percentage points higher than in the least deprived areas (3.1%).
• The most deprived areas in the North had higher Covid-19 mortality rates than equally deprived areas in the rest of England, indicative of ‘deprivation amplification’ where the negative health effects of local deprivation is worsened for those living in deprived regions.

Long Covid encompasses physical, cognitive and mental impairments, with brain fog, fatigue, breathlessness, low mood, and depression among the most common symptoms.

As part of the research, academics conducted interviews with people who have experienced or continue to experience Long Covid.

The findings lay bare the significant impact it has on the personal and professional lives of those with the condition. Many of the people involved in the research had been demoted, fired, forced to resign or switch to part-time work because of Long Covid.

During the research, one participant said: “At one point, more than once, I was surprised to wake up the next morning. I felt like I was having stroke-like symptoms, the pressure in my head. I couldn’t move enough to either call for my children or to reach for my phone to get help. I think I lost consciousness. The next morning, I was like, I can’t believe I’m waking up. I wrote my end of life wishes and told my kids what to do if I didn’t make it.”

The report recommendations centre on the need for more research into Long Covid – covering both biomedical and social research – and also the importance of drawing on learnings from other post-viral conditions to ensure better diagnosis and treatment for patients in future.

Dr Stephanie Scott, lead author of the report and Senior Lecturer in Public Health at Newcastle University, said: “Long Covid is a complex condition that goes beyond physical and mental symptoms, affecting other parts of people’s lives including their sense of self and professional identity. This can then lead to experiences of social isolation.

“Currently, there is little evidence-based treatment for Long Covid and the health system focuses on symptom management. This needs to change. Our research has offered a glimpse into the reality of what it is like to live with this often-debilitating condition and the knock-on effects it has on people’s personal and professional lives.

“I hope that the evidence presented in this report cuts through to policymakers and gets the attention it deserves so more research into Long Covid is funded, and so measures can be put into place which enables employers to better support their workforce with Long Covid.”

Hannah Davies, Executive Director at Health Equity North and Deputy Chief Executive at the Northern Health Science Alliance, said: “Covid-19 hit the country unevenly with a disproportionate effect on northern regions – more people died, we spent more time in lockdown, had higher unemployment, and experienced a larger drop in mental wellbeing. Yet again, we are seeing the lasting impact of the pandemic being felt the hardest in the North of England.

“This pattern is reflected in our latest report which shows the North as having the highest rates of people experiencing Long Covid. And it’s likely that these figures could be much higher as many people may not report their symptoms.

“The report provides a timely analysis of the health and economic repercussions of Long Covid, which we hope will prompt action from Government. The regional differences in rates of the illness and the relationship between deprivation is clear. It is also clear that more research needs to be done to understand this devastating condition so people can be diagnosed, treated and supported.”

The report recommendations are:

• Research funders should prioritise biomedical research into Long Covid to establish accurate diagnostic tests, understand the illnesses’ pathophysiological mechanisms and develop treatments.
• Research into the impact of known social determinants of health and their relationship with Long Covid should be undertaken.
• Learning from overlap with other post-viral conditions such as myalgic encephalomyelitis / chronic fatigue syndrome (MF/CFS) should harnessed during Long Covid research and further funding into these conditions should be allocated to assist with treatment and future pandemic preparedness.
• The relationship between disability figures, sex and Long Covid should be the basis of further research.
• Priorities for government: Government should develop programmes for employers to support members of their workforce with Long Covid;  A government consultation with Long Covid patients should be undertaken to better understand their condition and to implement care plans to facilitate rehabilitation and management of the condition.

View the full report here:

Health Equity North is a virtual institute focused on place-based solutions to public health problems and health inequalities across the North of England. It brings together world-leading academic expertise from the Northern Health Science Alliance’s members of leading universities and hospitals.