Not an equal opportunity disease: Covid-19 and health inequalities

Posted by Clare Bambra, Professor of Public Health, Newcastle University and Ryan Riordan, 5th Year Medical Student, University of Cambridge

Spanish Flu of 1918 was experienced unequally, with higher rates
  of infection and mortality among the most disadvantaged

As Covid-19 began to spread rapidly across the UK in early March, politicians and the media were keen to tell us that we were ‘all in it together’ and that the virus ‘does not discriminate’. As time passed, it became apparent that this wasn’t the case.

We now know that Covid-19 is far from a socially neutral disease, with clear clusters of more severe impact amongst our most deprived and marginalised communities.

We now know that people living in more socio-economically disadvantaged neighbourhoods and minority ethnic groups have suffered more with higher infections and death rates.

Historically, this has also been the case - evidence has shown that previous pandemics including the Spanish Flu of 1918 and the H1N1 pandemic of 2009 have also been experienced unequally, with higher rates of infection and mortality among the most disadvantaged parts of the country – both in the UK and internationally. 

Emerging evidence from a variety of countries suggests that these inequalities are being mirrored today in the Covid-19 pandemic. Both then and now, these inequalities have emerged through the syndemic nature of Covid-19, as it interacts with and exacerbates existing social inequalities in chronic disease and the social determinants of health.

The syndemic of COVID-19, non-communicable diseases (NCDs)
 and the social determinants of health

This is down to a number of factors – not least unequal exposures to the social determinants of health (the conditions in which we are born, grow, live, work and age) leading to higher rates of almost all of the known underlying clinical risk factors that increase the severity and mortality of Covid-19 (e.g. high blood pressure, diabetes, cardiovascular disease).

We may have been living under the same regulations, but across the country, our experiences of ‘lockdown’ were widely different. We knew this. We weren’t ‘all in the same boat’ - we were in the same ocean in the middle of the same storm - but some were on luxury liners and others on rapidly-deflating dinghies.

We saw lower-paid care workers, shop workers, transport workers, factory workers continuing to work face-to-face with the public, while others worked from home on full pay or were furloughed with some semblance of job security.

There were families trying to stay sane in small flats without outdoor space and with empty cupboards, whilst others in more fortunate circumstances trebled their flower delivery order to ensure their homes looked good during Zoom meetings.

 

The divide in our society is stark on many levels, and as we go forward, who will pay the price of the multi-billion pound interventions that the government has put in place to see us through this period, and bear the brunt of the post-Covid-19 global economic slump? 

Covid-19 has laid bare our longstanding social, economic and political inequalities. Even before the pandemic, life expectancy amongst the poorest groups was already declining in the UK and the USA and health inequalities in some European countries have been increasing over the last decade.

I know that this all makes for grim reading for researchers, practitioners and policymakers concerned with health inequalities. So what can we do?

It is vital that this time, the right public policy responses, such as expanding social protection and public services and pursuing green inclusive growth strategies, are undertaken so that the Covid-19 pandemic does not increase health inequalities for future generations. Public health must ‘win the peace’ as well as the ‘war’. It is our job to make that case.

As we start to shape our ‘new normal’ and as the government unveils its post-Covid-19 recovery plans for the UK, public health policy must be a priority.

We need to act now if we want to avoid deepening the health inequality divide even further for generations to come.

Read the full essay: The Covid-19 pandemic and health inequalities

With thanks to the NIHR Applied Research Collaboration North East & North Cumbria 

Image attribution:

1. Otis Historical Archives, National Museum of Health and Medicine / Public domain. https://commons.wikimedia.org/wiki/File:Emergency_hospital_during_Influenza_epidemic,_Camp_Funston,_Kansas_-_NCP_1603.jpg
2. The syndemic of COVID-19, non-communicable diseases (NCDs) and the social determinants of health (adapted from Singer and Dahlgren and Whitehead). With acknowledgement to Chris Orton from the Cartographic Unit, Department of Geography, Durham University, for his assistance with the graphics. https://jech.bmj.com/content/early/2020/06/13/jech-2020-214401.full?ijkey=haFkUOyJurtabHz&keytype=ref#F1
3. Screenshot taken from the Financial Times website: https://www.ft.com/content/8ea1c992-89f8-11ea-a109-483c62d17528 09/07/2020

Would easy-read documents for all mean a more inclusive healthcare system?

Posted by Kate Byrnes, Graduate Tutor & PhD Student, and Emma Giles, Reader in Public Health Behaviour Change, Teesside University

When you receive letters from the hospital or the doctors, what do they look like? Text heavy, with no pictures, and in a small font size? That is how the letter looked when I received my invitation to cervical screening.

Traditional appointment letter

Now imagine that instead of getting that letter, you received a letter which was written in a large font, used shorter sentences and included pictures. How would you react? Would you feel like the information was simple and clear to understand? Would you feel like you were being patronised and treated like a child? Or, would you even care?

Public Health England, have developed a cancer screening invitation letter in an ‘easy read’ format along with an easy read booklet. Both of which can be provided to support women with learning disabilities to access cervical screening. 

 

PHE cervical screening: easy read invitation letter template

Within an easy read document, the images are left-aligned on the page, with text for each image on the right side. This helps the reader gain an understanding of what the written text says.

However, women with a learning disability, do not receive these easy read versions as standard. Every women invited to screening is given a booklet along with the invite letter which goes some way to explain both what happens during the appointment and the content of the letter. However, would it not be better for everyone to receive an easy-read version in the first instance?

Someone may only receive additional information in an easy read format, if they are identified by their GP surgery as having a learning disability, or because they receive support from healthcare services for people with a learning disability.

What about women who have a mild learning disability and do not receive any support? Or people who struggle to understand written information? It is possible these groups of people will be less likely to attend cancer screening simply because they do not understand the invitation letter.

Four in 10 adults in the UK struggle to understand and use typical medical information designed for the public (NHS, 2020). This is called ‘health literacy’. Having low health literacy has been linked to a range of problems, including poor general health, inappropriate use of health services and reduced life expectancy (NHS, 2020). One mechanism to limit the effects of poor health literacy, is having information in plain English, with simple and short sentences, without jargon.

Therefore, if the NHS is to use standardised letters, should they all be in a simplified, easy read format? This could help services meet the requirements of the Equality Act (2010) which stated that services need to make “reasonable adjustments” to their provision including to the information they provide.

The need for reasonable adjustments within the cervical and breast cancer screening programmes has been highlighted in my PhD research. The research is exploring the attitudes and opinions of women with a learning disability, family carers, and paid care workers towards cervical and breast cancer screening. Within the interviews each participant completes a Q sort (a card sorting task) to identify whether participants agree, disagree, or are neutral towards 28 statements. Each statement is placed on an individual card. The card is then placed onto a grid, to reflect how much they agree or disagree with the statement. Upon completion, it represents a picture of a participant’s range of attitudes and opinions towards cervical and breast cancer screening. The below figure shows a completed Q sort by a women with a learning disability.

Q sort by a women with a learning disability

When designing my PhD research, woman with a learning disability where involved in Patient and Public Involvement (PPI). PPI is defined as “research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them” (INVOLVE, 2020). The Health Research Authority (HRA) has acknowledged that public involvement can positively impact upon the design of research, especially in the design stage (Health Research Authority, 2017). By including Experts-by-Experience it is possible to find out what matters most to the public, especially when the research is controversial or on a sensitive topic. This is the primary reason that I wanted to use PPI during the research. Additionally, there has been very limited research conducted in England on this topic, and involving people with a learning disability in the design of the research.

The PPI in my research was split into three consecutive phases; identifying women’s preferences for how they would like written information to be presented to them; checking the easy-read documentation developed for the research, and obtaining the women’s preferences on the design of the Q grid. The importance of removing jargon and medical terms was highlighted in the results of the PPI, when the phrase ‘lady bits’ was used, women with a learning disability understood the location and some of the problems they might face going for screening, but didn’t always understand the word ‘cervix’. This is an important consideration for the invitation letters to cancer screening.

The invitation letters for cancer screening use terminology such as ‘cervical’, ‘cervix’ and ‘Human papillomavirus’ and assume that people will know what these words mean. What impact could using jargon and medical terminology have on the women receiving the letter? One problem is that women could misunderstand the procedure. Whereas, in an easy read document, the anatomically correct terms could be used, alongside an image, or further description. As the below image depicts:

PHE cervical screening: easy read invitation letter template

Ultimately, should there be standard information provided to all, which is written in a way that everyone can understand? Would more people be able to understand the information? Would this have an impact on uptake of services such as screening, and would this result in a more inclusive healthcare system?

Images:

1. Courtesy of the BBC: https://www.bbc.co.uk/news/uk-england-tyne-4794639

2/4. Courtesy of Public Health England: https://www.gov.uk/government/publications/cervical-screening-supporting-women-with-learning-disabilities

If you are going to give up smoking, this is a very good moment to do it

In today’s Fuse blog Rachel McIlvenna, from Public Health South Tees, writes about managing a local specialist stop smoking service during the COVID-19 pandemic.

Casting my mind back to when the news started reporting increasing numbers of confirmed cases of COVID-19 in the UK feels like a lifetime ago. Chief on my mind pre-lockdown, was to re-emphasise the need for adhering to our robust infection control procedures, but also given the new threat to health, ensure we had sufficient stock of disposable gloves for clinic venues where there were no hand washing facilities. Looking back now, those days feel like a different era and my team, I and perhaps most people in the UK were unaware that our world was going to be turned upside down. 

In the weeks that followed things changed at a dizzying pace resulting in me activating our continuity arrangements earlier than anticipated, largely dictated by the shifting landscape that depended in part on what we heard from the Government’s daily press briefings but also from our strategy and plans as a Local Authority.

As the rates of infections started to increase exponentially, many services scurried to shut down for the foreseeable future and rightly so; everyone had to do their part to flatten the curve. We, as a service, didn’t have such a luxury by virtue of the fact that stopping support midway through a treatment pathway was not an option. The chances of a client successfully quitting smoking increase with regular behavioral support and uninterrupted access to treatments, like Nicotine Replacement Therapy (NRT) and Champix tablets.

Being responsible for the care of over 200 clients during a pandemic needs careful consideration. Our contingency plans made provision to stop face-to-face consultations in March with interim arrangements to supply stop smoking treatments during the pandemic. This challenge was further amplified when we received guidance from the National Centre for Smoking Cessation and Training (NCSCT) about ceasing all face-to-face consultations immediately and further news that the local community hubs, where clinics would normally be held, were shutting down completely to the public. So, without a location where clients could come and pick up their prescriptions regardless of social distance measures in place, we had to adapt our plans. Eventually and after several phone calls, we managed to support most of the clients via telephone and put arrangements in place for collection of scripts.

It didn’t end there though, as we then had the concern of how we would support new clients who wished to stop smoking, particularly pregnant women who were referred from maternity. Constant in my mind was safeguarding my staff and the public, so I knew that a long-term solution needed to be sought to minimise risk. After talking to several colleagues on the pros and cons of electronic vouchers and other options, we settled on posting prescriptions directly to clients (1st Class and with trackable labels) as it was the least restrictive option.

The next challenge was to introduce this very new way of working to my team, by explaining and demonstrating why this approach was best in these circumstances. Thankfully, a close colleague had helped me to draft a Standard Operating Procedure (SOP), which was soon amended and rolled out. This new way of dealing with scripts hasn’t been without its drawbacks. Sometimes the prescriptions have been delayed in the post for up to 10 days, which has meant that the staff have had to think 2-3 weeks ahead to ensure clients don’t run out of medication. But it has meant that we have minimised risk and enabled the team to work remotely from home, without the need to come to a central location to arrange for medication or go out to pharmacies, which have seen an increased demand during the pandemic.

The last few weeks have now been spent amplifying the #Quit4Covid message, learning from areas like Hertfordshire, Sheffield and Newcastle, and putting our own spin on these messages to engage smokers. This has included sending proactive text messages to unsuccessful quitters, bespoke postcards to homes of known smokers (who have given consent) and using social media. To date, we have seen promising results with many smokers engaging, and I am hopeful that there will be more dividends in future weeks.

What has been insightful for me has been the opportunity to lead our fantastic team of nurses during this period and observe their reactions to the unprecedented changes in their way of working and providing support for smokers. As a manager, it has been a privilege to help them navigate and accept the new realities that COVID-19 presents to all of us. Don’t get me wrong, it’s not all been smooth sailing, there have been several minor blips with a fair dose of IT challenges, to name just one. In the last few weeks, I have felt a quiet steadying as my nurses have become more confident about the change in work practices that they were long accustomed to as clinical staff. The challenges of remote consultations have been accepted, as has the notion that for some clients our weekly or fortnightly contact is literally a lifesaving form of communication.

The emerging evidence around adverse outcomes for smokers with COVID has reinforced what I have believed for a long time. Supporting people to stop smoking is one of most important public health interventions and not just for a host of non-communicable diseases associated directly or indirectly with smoking, but now with the threat of a communicable disease like COVID-19. To echo the words of England’s Chief Medical Officer Prof Chris Whitty to the Health Select Committee:

“If you are going to give up smoking, this is a very good moment to do it”

Rachel McIlvenna works as an Advanced Public Health Practitioner for Public Health South Tees and leads on tobacco dependency and long term conditions. Her portfolio also includes managing the in-house specialist stop smoking service, which includes a small team of vibrant nurse prescribers.

For information on stopping smoking in Middlesbrough / Redcar & Cleveland, visit: https://www.stopsmokingsouthtees.co.uk


Image attribution
3: "Dominic Raab Covid-19 Presser 06/04" by Number 10 via Flickr.com, copyright © 2020: https://www.flickr.com/photos/number10gov/49742982126/

COVID-19 has brought the “digital divide” to the fore

Posted by Gemma Wilson, Health Psychologist & Research Fellow in Applied Health, Northumbria University

With the onset of COVID-19 it seems that we are relying on technology even more than usual. Many of us are using technology as our main source of communication, such as for work meetings via Zoom, family chats on FaceTime, WhatsApp messaging, or sending photos. Online food shopping, ordered and delivered to your door, has become the norm. Internet banking and health services have become more important than ever, and online communication platforms are even allowing us to continue our hobbies and exercise. But not everyone has access to these tools to support their daily living and wellbeing at home. Even people with access to the technology may not have the skills to use platforms, such as Facebook, Skype or Zoom, which still leads to exclusion.

There is an ever-growing number of older adults using the internet and social media, with notable increased use across the UK, USA, and Europe over the last decade. However, older adults still remain less likely than younger people to use the internet and social media. That’s why we decided to do a piece of research that aimed to explore older adults’ experiences of using technology, including social media, to connect with others. Part of this study involved interviewing 20 people who were over 65 years old from across the UK, to understand how they used technology to communicate with others, and to consider what helps and hinders their use of technology. 

All participants in the study regularly used digital devices and social media, however, despite their regular use of technology, they still experienced five barriers to using it as a tool to connect with others:

1. Confidence
Some had low confidence, seeing themselves as novices and not “technology minded”, and some lacked patience with technology.

2. Fear
Some were fearful that they would break the devices, do something “wrong” that they couldn’t fix, or they were worried about privacy and misinformation.

3. Practical issues
Some experienced physical barriers, such as the size of text, or the buttons being too small.

4. Culture and communication
Cultural differences around communication impacted the way some of the participants used social media and their online connections. They worried about how they would come across or didn’t like the way others communicated using social media.

5. Social network
Finally, we also found that existing social groups and relationships were key in the older adults choosing to use technology and in helping to provide ongoing support. Often without this existing social network, they would not have even received a digital device, let alone started using it, or understanding how to maintain it.

The overall message that we took away from this research is that technology - even for those who use it on a regular basis - is still only a tool for social connection, a welcome tool, but only a tool, and it certainly isn’t a replacement for face-to-face communication. However, during COVID-19, technology must be a replacement for face-to-face communication, and is the best available way for us to remain connected with friends and family.

The reliance on technology since the onset of COVID-19 has brought the “digital divide” to the fore in the context of these barriers. Many will continue to rely heavily on technology during this uncertain period, and for as long as we are social distancing. During these measures, it is important that we consider people who do not have access to technology and are unable to rely on it in a way that others can, as well as those that do have access but continue to experience difficulties in its use. Specifically, due to no longer being able to rely on social groups and wider support networks for guidance in using technology. This lack of access significantly heightens inequalities for so many people in all of the ways discussed above.

To find out more about this study, the podcast “Ageing in a Digital World” is available to listen/download on the following platforms:

• Soundcloud
• Spotify
• iTunes

Dr Gemma Wilson is a Health Psychologist, and a Research Fellow in Applied Health at Northumbria University, Newcastle. Her research interests are in ageing, psychosocial wellbeing, digital inclusion, social participation, digital health. Contact Gemma at gemma.wilson@northumbria.ac.uk, or on Twitter via @drgemmawilson.

Research team: Dr Gemma Wilson, Mrs Jessica Gates, Dr Santosh Vijaykumar, Dr Deborah Morgan.

The research was funded by the British Academy/Leverhulme Trust.

Covid-19 and the legacy of Edward Jenner: a tale of two pathogens

Posted by Lesley Haley, AskFuse Research Associate, Teesside University 

2020 is going to be a momentous year in world history as the year that the Covid-19 pandemic changed all our lives.

Edward Jenner, English physician who discovered the smallpox vaccine

Coincidentally, this year also marks the 40th anniversary of a significant historic milestone for another deadly disease, but in this case, one which maimed, killed and shaped global history for the past three thousand years (Flight 2011). That disease was smallpox.

On the surface, there is nothing in common between a dead disease and a newly emerging one. But there are some aspects of the history of smallpox that resonate with the unfolding story of the Covid-19 pandemic.

Smallpox was still a killer when I was vaccinated against it in 1967 as part of a routine public health intervention, although it was no longer endemic in the UK. For my mother’s generation, the reality of smallpox was very stark. She experienced the panic of an outbreak in her home town of Glasgow during the war when she was only 10, and again when she was 16, when smallpox killed front-line staff treating infected patients at the local hospital.

Although in 1967 outbreaks in the UK of smallpox were getting rarer, the worldwide picture was very different. Smallpox was still endemic in many countries, maiming and killing an estimated 10-15 million people a year (Baxby 1999). This was despite the fact that Edward Jenner had first introduced a prototype inoculation against smallpox in 1798, had translated his theories and ideas into practice, and had a huge impact during his lifetime (the academic dream!).

One aspect of Jenner’s life and work bears closer scrutiny in light of the current Covid-19 pandemic, and particularly on the emerging debate surrounding the development of a new vaccine. During his lifetime, Jenner made his research, his ideas and his smallpox inoculations freely available to everyone, irrespective of who they were (Baxby 1999). Jenner and his contemporaries appreciated the commercial opportunities of his discovery, but he continued to give free inoculations to everyone who approached him at his surgery, despite the detrimental financial impact this had on his personal and professional life (Britannica 2020). He understood exactly what the implications of his discovery meant for the common good.

So if Jenner’s work was freely available, (and although certainly not perfect), why was smallpox still endemic in some countries in the world in 1967? Millward (2019) proposed that one of the main issues had been the lack of global “joined up thinking” in the approach towards smallpox eradication. It took until 1967 for countries where smallpox was not endemic to realise that they would always be at risk of continual and increasing numbers of smallpox outbreaks, if the disease was still endemic in other parts of the world. Wherever in the world there was smallpox outbreaks, it caused mass panic, strained public health systems to the limit, maimed and killed, and even had economic impacts on national and international trade and travel (Millward 2019). It therefore became in every countries' interest to support a systematic, unified and global approach to smallpox eradication. Under the auspices of the World Health Organisation (WHO), the global strategy of surveillance, containment and vaccination free at the point of delivery and irrespective of ability to pay, worked. In 1980, the WHO declared the world free from smallpox (Baxby 1999) and it became the “first disease to be controlled by immunisation, the first to be eradicated” (Baxby 1999).

So what will historians say about the story of Covid-19? What will be the role of the global community in tackling the Covid-19 pandemic? Will Jenner’s altruistic example of free and accessible vaccinations be consigned to the history books in the 2020 global race to develop a lifesaving Covid-19 vaccine?

On the global front, 4 May 2020 saw world leaders, the UN, research institutions and philanthropic organisations pledge resources to find a vaccine for Covid-19 (albeit with the ominous absence of two major world powers) (BBC 2020). And the race for a vaccine has sparked debates on who, where, and how people would access a Covid-19 vaccine, with speculation for example, that pharmaceutical companies may have to change their business practices (Chu 2020). In the history of smallpox in the UK, vaccine stockpiles were held by private businesses, highlighting “that public health resources were not always in public hands” (Millward 2019, p. 64).

Global businesses have also contributed to an “Open Covid Pledge, “to make intellectual property available free of charge for use in ending Covid-19 pandemic and minimising the impact of the disease” (Open Covid Pledge 2020).

When global powers pulled together for the common good, it took just 13 years to rid the world of a disease that had killed millions across the continents of Africa, America, Australia, Asia and Europe in its 3000 year reign of terror. Prior to that, without global unity and treatment free at the point of delivery, it took 169 years. I wonder what Edward Jenner would have thought?

So as our Covid-19 story unfolds in 2020 and beyond, I wonder how future generations will judge the actions and decisions of our current global leaders and businesses?

References:

1. Flight, C (2011) Smallpox : Eradicating the scourge. BBC History. Last updated 17 Feb 2011. Available: https://www.bbc.co.uk/history/british/empire_seapower/smallpox_01.shtml Accessed: 05 May 2020.
2. Baxby, D (1999) The End of Smallpox. History Today Vol 49 Issue 3. Available: https://www.historytoday.com/archive/end-smallpox
3. Britannica (2020) Edward Jenner. Available: https://www.britannica.com/biography/Edward-Jenner Accessed: 6 May 2020. 
4. Millward G (2019) “Smallpox” Vaccinating Britain: Mass vaccination and the public since the Second World War, Chapter 2. [Internet]. Manchester (UK): Manchester University Press; 2019. Chapter 2. Available: https://www.ncbi.nlm.nih.gov/books/NBK545998/#!po=98.8688 Accessed: 5 May 2020. 
5. BBC News (2020) Coronavirus: World Leaders pledge billions for vaccine fight. Available: https://www.bbc.co.uk/news/world-europe-52525387 Accessed: 5 May 2020. 
6. Chu, B(2020) “To find a vaccine for coronavirus, pharmaceutical companies will have to Adamson the race for profit”. The Independent. Available at: https://www.independent.co.uk/voices/coronavirus-vaccine-uk-pharmaceutical-companies-patent-monopoly-a9467381.html Accessed: 16 April 2020. 
7. The Open Covid Pledge (2020) Available: https://opencovidpledge.org. Accessed: 5 May 2020. 

Acknowledgements:

• Mrs Patricia Hoyland (pers comm)
• BBC Today programme. Thought for the day. David Wilkinson 4 May 2020.

Image: “Edwar Jenner” by Pan American Health Organization PAHO via Flickr.com, copyright © 2010: https://www.flickr.com/photos/pahowho/9525240640. Attribution-NoDerivs 2.0 Generic (CC BY-ND 2.0)

Experts by Experience challenge us to create opportunities for them to take the lead in research

Posted by Ang Broadbridge (Research and Evaluation Lead) and Ged Hazlehurst (Expert by Experience) Fulfilling Lives Newcastle Gateshead

Earlier this year Fuse and Fulfilling Lives Newcastle Gateshead co-chaired a Quarterly Research Meeting sharing initial findings from a joint research project that explored the reasons underlying high death rates among people with multiple and complex needs (MCN). There we asked attendees to consider the findings and help shape recommendations.

Now as we write up the findings during the height of the Covid-19 pandemic, we are reminded that drug related deaths and MCN issues have been a public health crisis long before the pandemic, though it has drawn an even sharper focus on health inequalities at this time.

The findings from the study will be available in a forthcoming end of project report but in this blog we wanted to go behind the scenes with Experts by Experience to share our experiences of co-production in public health research.

Some background

So what is Fulfilling Lives Newcastle Gateshead (FLNG), and what are Experts by Experience? FLNG is an eight-year learning programme looking to improve the lives of people with complex needs and build a trauma-informed approach within the services that support people across Newcastle and Gateshead. Experts by Experience are people with lived experience of multiple and complex needs, and have vital things to say that can help shape the future of how systems and services work for their peers.

Co-producing research

Co-production is bringing together the people using services and the people providing those services to share power and work collectively to design, develop or deliver improvements to them. This also involves seeing services and staff as agents for change and seeing people who use services as assets with skills, who in turn, gain from their contributions and move towards positive change. For example, Experts by Experience on the FLNG programme have developed training resources for Department for Work & Pensions staff raising awareness of MCN issues, which were rolled out across JobCentre Plus.

FLNG wants research to be genuinely co-produced and has invested in creating a National Vocational Qualification accredited peer research skills training package and local Peer Research Network. This is to support a shift from involvement led by professionals to an approach in which peers define the remit and research questions, leading on all aspects of the research design, delivery and dissemination.

Experts by Experience defining research problems

The beauty of the Fulfilling Lives programme has been our small team and the small caseloads; with at the most eight frontline practitioners each working full time with just 10-12 people. We work intimately with these people, building strong trusting relationships, getting to know their families, and being by their side through crisis.

Between 2014 and 2020 we worked with 267 people, during which time we experienced 27 deaths on programme. That is around 10% of the client cohort, so you can perhaps imagine the impact of that 10% on a small team who have been deeply involved in the lives of the people they have navigated through services.

We talked to our Experts by Experience Network about this and as the programme research lead I (Ang) was really wary about the sensitive subject matter and its potential for re-traumatising. My thinking was challenged when the Experts Network were really passionate about deaths in their community and told us they were already talking about it, often without much support, so not to shy away. Then they challenged us to think about how our co-production and peer research offer could dig deeper to explore this issue. We asked Experts by Experience to help us explore what it would look like for them to take a peer-led approach to this work. They really helped shape the ethics process, for example they told us to look within their Network for participants, as we could guarantee good support for people to discuss any issues that emerged out of participation. In doing so they, the Experts by Experience, identified the topic for this project.

What was the feedback from our co-produced research event? 

When we met for the Fuse QRM the purpose of the session was to study the initial findings gathered from the series of focus groups we ran exploring MCN deaths. It was interesting then that the feedback we received from the event, asking people’s views on what we found and what was surprising, clustered around co-production in research. This suggests that this research has the potential to challenge beliefs about the involvement of people with lived experience in public health research:

• People were surprised by the extent to which Experts by Experience were able to take on such a difficult subject, and;
• People were surprised by the normalisation of death within our Expert by Experience community. 

It is our hope that this acts as a springboard for more and better involvement of people with lived experience of multiple and complex needs in public health research. We have explored a sensitive and challenging subject with Experts by Experience who challenged us to create opportunities for them to take the lead. We hope that as our Peer Research Network grows, other researchers can build on the peer research model we utilised in this study to shape their own research projects.

FLNG is one of twelve programmes linked across England funded by the National Lottery Community Fund, looking to influence the system nationally. A Core Partnership of Changing Lives (lead partner), Mental Health Concern and Oasis Community Housing lead the programme’s activity, for more information visit http://www.fulfillinglives-ng.org.uk/


Images courtesy of http://www.fulfillinglives-ng.org.uk

This crisis has shown how many people were only just about managing

Mandy Cheetham, Research Associate from Teesside University, on the community response to the coronavirus crisis

I have been working as an embedded researcher at Larkspur House, a community project run by the charity Edberts House, funded by Big Lottery, to build happier, healthier and safer communities since October 2019. I started there, not long after it opened, to explore what difference the project is making, and fieldwork was well underway when COVID-19 struck. The project reluctantly had to take the decision to close and the groups and activities temporarily stopped. Like many others, I started working from home, feeling helplessly disconnected from people that I’d got to know, and wondering how everything was going.

A phone call from a colleague at 6pm on 30 March changed all that with an invitation to get involved in the multi-agency response to the COVID-19 crisis. Larkspur House was to morph into one of nine community hubs co-ordinated by Gateshead Council distributing food parcels, delivering prescriptions and offering support to people who are medically and socially vulnerable. I jumped at the chance, and since then, it has been something of a rollercoaster. We are a small, multi-disciplinary team, with complementary skills, talents and experience in an extremely busy hub. We phone people who have contacted the council for help to see what they need. In 4 weeks, we have delivered 250 food parcels to approximately 1000 people in the local community and three neighbouring estates. It’s important, exhausting, rewarding and at times frustrating work. It has revealed enormous generosity, neighbourliness, resilience, kindness and anxiety in the communities we serve. The crisis has also shown how many people were only just about managing day to day.

Since the lockdown started, I have listened to people who are fearful for their lives, worried about how they, their families and friends are going to manage through this crisis; the precariousness and embarrassment of people having to admit they are down to the last packet of pasta; people having to borrow from neighbours, family and friends; at the end of their resilience facing additional hurdles; people relying on Universal Credit, who’ve been sanctioned pre-lockdown and whose money has been stopped for 4 weeks during lockdown; the family with 4 children under 7 whose utility company cut off their gas supply leaving them without hot water or heating; the response of an unflappable team member who calmly and unquestioningly dropped off a food parcel and topped up the gas meter at 9pm on a Friday night to help a family through the weekend.

People who are routinely going out of their way to help people through this; pharmacists working flat out to process and deliver prescriptions, family members in touch with concerns about parents, grandparents and great-grandparents who they cannot help for fear of putting them at risk. The kindness and dependability of the volunteers from the estate who deliver daily packed lunches to children on free school meals, including on Good Friday and Easter Monday. The same volunteers who methodically planned, packed and delivered more than 300 craft packs to go out with donations of Easter eggs in the local area. The drivers and volunteers delivering the food; the unquestioning generosity of supermarket managers in local shops who I have approached for donations of bread, eggs, toiletries, nappies, baby wipes and fresh vegetables to include in the emergency boxes we distribute. The teachers, assistants and school staff looking after key workers’ children and children of families who need extra help. The humour of the Larkspur craft and natter group, formed by staff in response to being unable to meet weekly, so people can offer encouragement and support remotely, sharing tips, knitting hearts and NHS bears for patients and their families. People’s willingness to help where they can in creative and diverse ways; the unrelenting drive and ambition to help people through this awful, unprecedented crisis.

In such a short space of time, it has revealed so much of what can be achieved when we pull together, build on the trusting relationships and networks we have developed, sometimes over years, with respect, kindness, compassion, thoughtful leadership and careful co-ordination, non-judgemental and flexible approaches. It is, and continues to be a privilege to be part of this team. It couldn’t have happened in the way it has without the community members, staff and volunteers from Larkspur House whose nimble, agile response has made a tangible difference to local people. Relationships have been strengthened and cemented; bonds that will last.

Some people are saying the world has changed forever. I hope it is for the better. I hope the academic and research community has been able to show what a difference we can make when we work together, in collaboration with local communities, responsive voluntary organisations working alongside staff from local government, NHS, and education. Universities can claim to be part of a wider civic response, and at times like this, we can contribute in multiple ways. Whether our area of research is on vaccines, testing, contact tracing, epidemiology, modelling, food poverty, Universal Credit, welfare reform, nutrition or any other area of public health, there are multiple ways to be useful in the short, medium and long term. It involves working with others, as part of teams generating solutions together. We need to accept we do not have all the answers, we are part of a jigsaw of possible responses. That might mean moving out of our comfort zone, rolling up our sleeves and packing food parcels with colleagues and communities who will remember you were there with them when it mattered.

There are wider issues of course, longer term policy issues to focus our attention on, including policy issues to do with Universal Credit, welfare reform and its impact, which pushed people to the edge of coping before COVID-19 started. But for now, there are more pressing issues of food and prescriptions to deal with. Your local area will have its own responses and networks in place, formal and informal. If you’re shopping for others, that’s great. Can you safely check on neighbours around you? When you’re in the supermarket, foodbanks need your donations more than ever. Find out what they need. For the hubs, tinned meat, tinned fish, coffee, UHT milk, cereal, washing up liquid, shower gel and shampoo are useful. If you are in a position to donate, please do. Find out where your local voluntary organisations are helping and how you can support them. If you want to find out more about the charities involved in the Gateshead hubs, visit https://www.ageuk.org.uk/gateshead/help-pages/coronavirus/ or http://edbertshouse.org