Tackling malnutrition during the pandemic and beyond

Posted by Megan McGuire, MSc Dietetics student, Teesside University

Part of our Fuse blog Student Series

The Fuse blog Student Series showcases posts by students who have been challenged to write a blog as part of their studies at one of the universities in the Fuse collaboration, the NIHR School for Public Health Research, or perhaps further afield. The authors may be new to blogging and we hope to provide a 'safe space' for the students to explore their subject and find their voice in the world of public health research.

As a dietetic student looking into public health and nutrition, it can often feel that the majority of policy focuses on the issue of obesity and ‘over-nutrition’. However, undernutrition, or malnutrition as it is more commonly referred to, remains a significant issue which is often overlooked in terms of policy.

Malnutrition is a term generally used to describe when your body is not getting the nutrients it needs to function properly. Good nutrition is important for every organ in our body, and therefore the consequences of malnutrition can be vast. This can include, increasing our risk to infections due to a weakened immune system and compromising our ability to regulate temperature, leading to hypothermia and potential organ failure of the heart and lungs (BAPEN, 2018a). Malnutrition can also make worse some of the things that cause it, such as social isolation, through its impact on mental health, including depression, anxiety and self-neglect (Public Health England, 2017). 

Malnutrition is unfortunately a common problem, particularly in those aged over 65, and is thought to affect over three million people in the UK at a cost of nearly £20 billion (Elia, 2015). In light of this, it is crucial that it can be easily detected within vulnerable groups, so that the devastating downstream consequences can be prevented.

Unfortunately, Covid-19 has made this all the more challenging. I know, from my personal experiences of remote dietetic placement working in the NHS, that one of the hardest things to find out via an online or telephone consultation is accurate height or weight information from the person on the other end of the line. This is not only pivotal for the majority of dietetic care, but also to the Malnutrition Universal Screening Tool (MUST), which can be used by any healthcare professional to determine someone’s risk of malnutrition (BAPEN, 2018b).

Current policy focusing on older adults, the people most vulnerable to malnutrition, tends to focus on strategies to promote ‘healthy ageing’, enabling wellbeing into later life (Age UK, 2011; WHO, 2012). There is, however, a lack of policy addressing malnutrition, specifically for those living in the community. Guidelines from the National Institute for Clinical Excellence (NICE) recommend screening for those within care homes and inpatient settings (NICE, 2012).

I feel that if more effort was put into community screening and early intervention, there would be fewer people admitted to hospital as a result of malnutrition, and therefore this is where public health efforts should be focused.

Whilst it may feel that Covid-19 is all anyone can talk about right now; I think we need to consider the impact it may be having on levels of malnutrition. Before the pandemic hit, there were already vulnerable people within the community who may have struggled to get out and about to do their shopping and care for themselves. The threat of a potentially deadly infection, for many, has driven them further indoors and into isolation. Alongside the direct effects of reduced access to food, due to venturing out less frequently and people ‘stockpiling’, there are also the psychological effects of the pandemic to consider. I know at times I have found lockdown challenging, so I can’t imagine how difficult it must have been for those living alone and feeling extremely isolated and vulnerable. Alongside issues of digital poverty too. Another point to consider is that these individuals may be less inclined to visit their GP or be seen by other healthcare professionals at these times, meaning that malnutrition is less likely than ever to be picked up.

The Patients Association Nutrition Checklist

So, what is the solution? We need to find a way to access the most vulnerable within society, at a time when staying indoors and away from others feels most safe. Public health policy needs to look at GP surgeries and ways in which they can target those who fall within the ‘at risk’ category. This could involve the use of digital technology, which has been shown to be successful in identifying malnutrition but may not be the best fit for those who can already feel isolated by a technology-driven world (Peek, Sujan & Scott, 2020). Another suggestion could be the rollout of the Patients Association Nutrition Checklist (2018), a less clinical, simple and easy to use tool which has been validated against MUST as a reliable method to detect malnutrition.

Whatever the approach, this is something I feel is underrepresented in the media and requires more public health attention in light of the pandemic. While I make sure to keep an eye on those around me who may be vulnerable to malnutrition, not everyone has that support network to fall back on and as a society, we ought to do more.


References:

• Age UK (2011) Healthy Ageing Evidence Review. Available from: https://www.ageuk.org.uk/globalassets/age-uk/documents/reports-and-publications/reports-and-briefings/health--wellbeing/rb_april11_evidence_review_healthy_ageing.pdf (Accessed 3 August 2020) 
• British Association for Parenteral and Enteral Nutrition (2018a) Introduction to Malnutrition. Available from: https://www.bapen.org.uk/malnutrition-undernutrition/introduction-to-malnutrition (Accessed 1 December 2020) 
• British Association for Parenteral and Enteral Nutrition (2018b) BAPEN Malnutrition Self-Screening Tool. Available from: https://www.bapen.org.uk/screening-and-must/malnutrition-self-screening-tool (Accessed 30 November 2020) 
• Elia, M. (2003) The ‘MUST’ report. Nutritional screening for adults: a multidisciplinary responsibility. Development and use of the ‘Malnutrition Universal Screening Tool’ (‘MUST’) for adults. Available from: https://www.bapen.org.uk/pdfs/must/must-report.pdf (Accessed 30 November 2020) 
• National Institute for Clinical Excellence (2012) Nutrition support for adults: oral nutrition support, enteral tube feeding and parenteral nutrition. Available from: https://www.nice.org.uk/guidance/cg32 (Accessed 4 August 2020) 
• Peek, N., Sujan, M. and Scott, P. (2020) ‘Digital health and care in pandemic times: impact of COVID-19’, BMJ Health Care Inform, 27: e100166 Available from: https://informatics.bmj.com/content/bmjhci/27/1/e100166.full.pdf
• Public Health England (2017) Impact assessment: Helping older people maintain a healthy diet: A review of what works. Available from: https://www.gov.uk/government/publications/helping-older-people-maintain-a-healthy-diet-a-review-of-what-works/helping-older-people-maintain-a-healthy-diet-a-review-of-what-works (Accessed 1 December 2020) 
• World Health Organisation (2012) Policies and priority interventions for healthy ageing. Available from: https://www.euro.who.int/en/health-topics/Life-stages/healthy-ageing/publications/2012/policies-and-priority-interventions-for-healthy-ageing (Accessed 3 August 2020)

Images:

2. 'The Patients Association Nutrition Checklist' courtesy of The Patients Association: https://www.patients-association.org.uk/blog/patients-association-nutrition-checklist

Now that's what I call blogging 2020: the Covid edition

Posted by Mark Welford, Fuse Communications Officer, Teesside University

It was business as usual for the Fuse blog in January 2020.  PhD student Kelly Rose told us about having sleepless nights thinking about school food and teenage diets; Coral Hanson and her co-authors channelled their inner Mr Motivator to consider whether exercise referral was fit for a new decade; and Angela Wearn asked if reaching the ‘hard-to-reach’ meant leaving traditional academia at the door?

So far so good… and then the ‘C’ word arrived and the world changed and with it the Fuse blog in the form of John Mooney’s frighteningly prescient post on the 5 February - Coronavirus: expect the unexpected in an unfolding emergency.

Last year we published posts about workplace health, tackling obesity through planning policy, the impact of commercial actors on health, food shaming, mental health, the emotional road to impact, Universal Credit, facing a Parliamentary Select Committee, inequalities, family carers of people living with dementia, International Men’s Day (yes, there is one!), and kicking Coca-Cola out of Christmas.

Our authors asked: 

• Can your education, income or even your job affect your chances of receiving newer cancer treatments? 
• Why is it so difficult to change our health habits? 
• Does antibiotic prescribing penalise communities in most need? 
• Would easy-read documents for all mean a more inclusive healthcare system? and;
• What is the recipe for a happy retirement?

But it will come as no surprise that the 2020 chart of the top five most-read Fuse blog posts is dominated by one topic: Coronavirus, Covid-19 or just plain COVID.

Here are our chart-toppers of 2020:

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

First up is our only non-Covid related entry in which Angela Broadbridge and Ged Hazlehurst from the Fulfilling Lives Newcastle Gateshead project write about co-producing research with people with lived experience of multiple and complex needs.

Page views: 1727.  Posted: 15 May 2020

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

Gemma Wilson from Northumbria University explores how a lack of access to technology and wider support networks during the pandemic is significantly heightening inequalities.

Page views: 1839.  Posted: 29 May 2020

 

3. Coronavirus: expect the unexpected in an unfolding emergency

Up next is the aforementioned post by John Mooney, Locum Consultant in Public Health at NHS Highland and one-time specialist in the epidemiology of respiratory infectious diseases. Published days after the first confirmed UK cases, John's blog was prophetic in highlighting the potential for symptomless transmission, virus instability and divergent strains.

Page views: 1909.  Posted: 5 Feb 2020

 

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

Our runner-up is Mandy Cheetham from Northumbria University writing about her experience with a community hub delivering food parcels, prescriptions and supporting vulnerable people during the pandemic.

Page views: 2019.  Posted: 9 May 2020

 

1. Working from home isn’t for everyone - here’s how to cope if you’re struggling

"Being isolated at home can be hard; it is easy to feel cut off from friends and co-workers, to feel out of the loop when it comes to work decisions and to feel stressed with how best to work when at home."  

During the first national lockdowns imposed by the UK governments, Annabel van Griethuysen from Tees, Esk and Wear Valleys NHS Foundation Trust, shared her tips on working from home. These include keeping a routine, eating and drinking well, having a completely separate space to work (if possible) which is tidied or hidden away at the end of the day, staying connected and reaching out to talk to your social circles if you feel anxious and stressed.

At a time when many people are again being asked to work from home it is apt that Annabel's post should take the crown as most popular blog in 2020.

Page views: 2106.  Posted: 9 April 2020

So there you have it, the top five Fuse blog posts from 2020.  All five received more page views than last year's number one, which is thanks to our loyal readers and fantastic contributors - thank you!  

Can we do any better in 2021?  If you fancy giving it a go, please find out what we are looking for and how to take part here.  All contributors receive a much sought-after Fuse badge, and the writer of the most read post wins a rare and coveted Fuse paperweight.*

Happy New Year!

*when we are allowed back in the office!

Images:

1. "Now That's What I Call Music! 1991" by Brett Jordan is licensed under CC BY 2.0
2. Courtesy of Fulfilling Lives Newcastle Gateshead: http://www.fulfillinglives-ng.org.uk

All page views correct at the time of writing.

Let’s kick Coca-Cola out of Christmas for good

Posted by Robin Ireland, Director of Research, Food Active, PhD Candidate, University of Glasgow @robinHEG

You may have thought Coca-Cola invented Christmas. In a sort of way, they did of course. Arguably, modern Santa was designed by an advertising campaign for Coca-Cola in 1933 (Forsyth 2016). And, Santa, whether in the twentieth or twenty-first century, is all about encouraging us to consume. In Coca-Cola’s case, a sweet brown liquid that should logically have absolutely nothing to do with a winter celebration in, originally at least, the Northern Hemisphere.

Coca-Cola has been creative at making up traditions as part of their marketing campaigns since the soft drink was invented in Atlanta, USA, in the late nineteenth century. They have been muscling in on our favourite cultural practices pretty much ever since, in their growth to become a hugely successful and profitable transnational corporation. They have been involved with the Olympics since 1928 when vendors set up branded kiosks in Amsterdam (Keys 2004). A similar relationship with the FIFA World Cup from 1975 was seen as critical at expanding Coca-Cola’s influence into China and the Arab countries (Sugden and Tomlinson 1998).

Coca-Cola expert at manipulating our deepest wishes and our emotions whether they are talking Christmas or football. The pandemic may have prevented their Christmas Truck tour in the UK, but, never fear, their international marketing department is on the case. A two and a half minute commercial on YouTube featuring a little girl and her Dad’s attempts to deliver her letter to Santa at the North Pole had already received over 37 million views at the time of writing, whilst pulling at our heart strings.

Professor Dame Sally Davies, the previous Chief Medical Officer in England, wrote, “Commercial companies use a range of strategies and other approaches to promote products and choices that affect human and environmental health, defined as the commercial determinants of health” (Davies 2019 Annex D, p.4). And Coca-Cola are the masters. Luke Allen (Allen 2020) described the corporation as “virtually a cartoon villain in many public health circles” (p.29). Commercial determinants of health can be divided into four channels in which transnational corporations influence health (Kickbusch et al. 2016). Let’s consider how Coca-Cola use these channels.

The marketing is the most obvious. The red and white Coca-Cola brand is ubiquitous. This year the Christmas Truck Tour will not be visiting Liverpool or Glasgow and other major British cities. But the corporation’s partnership with the Premier League enabled it to tour those city centres in 2019.

This year the Christmas Truck Tour will not be visiting major British cities but the corporation’s 
partnership with the Premier League enabled it to tour those city centres in 2019

How about lobbying then? Marion Nestle (2015) has done a great job in describing how the ‘soda industry’ has learned from the tactics of the tobacco industry in funding dubious research. In funding campaigns and legal challenges to taxes on sugary drinks for example.

As many transnational corporations are criticised for the damage that consumption of their products can cause to human health, so, many try to position themselves as good corporate citizens. Coca-Cola adopt the same tactics and support a number of charities such as FareShare, Street Games, the World Wildlife Fund and Special Olympics GB. It’s sad that in a tough world, it’s often left to corporations to fund good causes rather than government. I thought that had been left in the Victorian age rather than reappearing in the twenty-first century. Coca-Cola also support the Department of Transport’s THINK road safety campaign. In this a volunteer is encouraged to be a Designated Driver to bring intoxicated friends home safely from their Christmas parties. The language of a “responsible drinking culture” is all part of the transnational corporations’ tactics of blaming all of us for believing their marketing and over-consuming their products. That’s right, the soaring levels of overweight and obesity and distressing images of tooth decay amongst youngsters in the UK, are all down to us, the irresponsible parents.

Finally, transnational corporations are experts at developing extensive supply chains to amplify their global ambitions. According to Nestle (2015), Coca-Cola claims to sell its products in two hundred countries with only Cuba and North Korea escaping its clutches. And that’s down to US trade embargoes not to Coca-Cola’s marketing executives.

It’s very hard to argue against Coca-Cola’s Christmas truck tour. Food Active and public health advocates have done so for many years being called the fun police along the way and advocates of the nanny state. We can only speculate the reasons why the tour has been scaled back in the North West in recent years (where Food Active largely operates), but we would take some comfort in the idea that our lobbying played a role in steering the truck off course.

Allen (2020), referenced Coca-Cola’s 2018 annual report, to show the corporation spends approximately US$4 billion per year on advertising. And they wouldn’t be spending that kind of money if the advertising didn’t work. The marketing has persuaded some that Christmas isn’t Christmas without the Coca-Cola Truck Tour. Well, you know the Holidays ARE Coming this year. Because this dreadful pandemic has at least kept some of Coca-Cola’s marketing out of our towns. Let’s just hope that the growing link between obesity and Covid-19 (Alberca et al. 2020) may encourage more to consider how we can limit the advertising of Coca-Cola and other transnational corporations that promote their high in fat, sugar and/or salt products to children. And let’s start to kick Coca-Cola out of Christmas.


References:

Alberca, R.W., Oliveira, L.d.M., Branco, A.C.C.C., Pereira, N.Z. and Sato, M.N. (2020) 'Obesity as a risk factor for COVID-19: an overview', Critical Reviews in Food Science and Nutrition, 1-15, available: http://dx.doi.org/10.1080/10408398.2020.1775546.

Allen, L.N. (2020) 'Commercial Determinants of Global Health' in Kickbusch, I., Ganten, D. and Moeti, M., eds., Handbook of Global Health, Geneva: Springer International.

Davies, S.C. (2019) Time to Solve Childhood Obesity, London, available: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/837907/cmo-special-report-childhood-obesity-october-2019.pdf [accessed 27 November 2020].

Forsyth, M. (2016) 'Coca-Cola didn’t invent Santa ... the 10 biggest Christmas myths debunked', The Guardian, 21 December 2016, available: https://www.theguardian.com/lifeandstyle/2016/dec/21/coca-cola-didnt-invent-santa-the-10-biggest-christmas-myths-debunked [accessed 27 November 2020].

Keys, B. (2004) 'Spreading Peace, Democracy , and Coca-Cola®: Sport and American Cultural Expansion in the 1930s', Diplomatic History, 28(2), 165-196.

Kickbusch, I., Allen, L. and Franz, C. (2016) 'The commercial determinants of health', The Lancet, 4, 895-896.

Nestle, M. (2015) Soda Politics. Taking On Big Soda (And Winning). Oxford: Oxford University Press.

Sugden, J. and Tomlinson, A. (1998) FIFA and the Contest for World Football. Who rules the peoples' game? , Cambridge: Polity Press.

Image 2: Coca-Cola Tour Bus. Liverpool, March 2019. Photo courtesy of E.Boyland.

The views expressed in posts are those of the authors and do not necessarily reflect those of Fuse (the Centre for Translational Research in Public Health) or the author's employer or organisation.

Being part of UC:US

Posted by Maria Thompson, UC:US member, and Ruth Patrick, Lecturer in Social Policy, University of York

Illustration by: www.hatiillustration.com 

In this blog post we hear from Maria, a member of UC:US, a group of people claiming Universal Credit in Belfast working to share experiences of the benefit and to make recommendations for change.

Maria was introduced to Fuse by Ruth Patrick, from the University of York, after an exclusive showing of a new play called 'Credit', described in this accompanying Fuse blog post by Mandy Cheetham.

Maria took part in research with Universal Credit claimants living in Northern Ireland funded by Joseph Rowntree Foundation (JRF)*.

The below is in Maria's own words and has been unedited.


Two years ago, I was made redundant. Due to my postcode I had to claim Universal Credit. This created a massive snowball effect and after two years I am still dealing with the negative consequences. Claiming Universal Credit was the easy bit. I found myself in rent arrears of £1600 and with an old tax credit overpayment of £1400. A week later the eviction letters arrived. Even after explaining my situation, I was faced with third stage eviction letters. I got legal advice from my solicitor as I was already getting divorced and I contacted my MLA (Member of the Legislative Assembly of the Northern Ireland Assembly) for more help.

Listen to Maria's experience of Universal Credit

My MLA asked if I’d be interested to get involved in a research project funded by the Joseph Rowntree Foundation and working with Mark Simpson (Ulster University) and Ruth Patrick (University of York). Mark met with me first, and we talked about my experiences on Universal Credit. Then, we met up as part of a wider group with about 12 people who are on Universal Credit across Belfast. The group met over the course of a year and we decided to name ourselves UC:US.

The purpose of the project was to gather information from different participants’ experience of Universal Credit. We discussed our stories individually.

From day one, nobody had anything positive to say. We all agreed that Universal Credit needed to be drastically improved or scrapped. We worked with an illustrator to show our journeys on universal credit; talking about how the benefit made us feel. We also heard from other experts about their ideas for change to Universal Credits. We put it all together in a leaflet setting out our recommendations for change.

We found that for Universal Credit to be improved, there is a need to:

• Increase the amount paid to avoid people living in poverty
• End the 5 week wait time for a first payment
• Stop the benefit triggering debt 
• Have experienced and trained staff 
• Make Universal Credit user friendly. 

After we concluded our findings, we were delighted to be invited to speak at the House of Lords. We were all excited about a day trip to London and to the Houses of Parliament. This was cancelled due to Coronavirus. We did eventually though get to participate in a meeting virtually at the House of Lords on Universal Credit via Zoom, hosted by Baroness Ruth Lister, and organised by the Social Policy Association. This for our group was very empowering to hear our voices being spoken, listened to and approved by Members of Parliament and the House of Lords.

UC:US hope the government can learn from past mistakes so that Universal Credit can be improved. We want a future where new claimants are not financially scarred or mentally drained from a never ending battle for pennies only to end up owing thousands.

You can find out more about the work of UC:Us at www.ucus.org.uk

* More about the research

As part of research funded by Joseph Rowntree Foundation (JRF), Universal Credit claimants living in Northern Ireland took part in a series of six participatory workshops in 2019. These workshops - which were conceived as 'experts by experience panels' - were a chance for participants to share their experiences and journeys on Universal Credit, and to work together to develop recommendations for change. Importantly, the project adopted a participatory approach; and participants were involved in all the key decisions; including choosing which arts-based output to develop to share key project findings. Participants decided to develop an illustrated flyer; working in partnership with illustrator Hannah Miller. Participants also had the opportunity to hear from people with other forms of expertise about their views about what changes are needed to Universal Credit, and why, and to use that information to inform key decisions about their final recommendations for change. 

 

The project findings have been published by JRF, and participants have since taken part in policy meetings and discussions with Northern Irish politicians and officials, as well as talking at a number of national parliamentary events. The project is now entering a new phase, with funding from the Economic and Social Research Council enabling collaborative work to continue policy discussions between the participants - who call themselves UC:Us - and policymakers and work to create a guide for new claimants of Universal Credit.

“Speaking truth to power is all we can do”

Bringing arts and research together to prompt debate about Universal Credit

Posted by Mandy Cheetham, Research Fellow in the Applied Research Collaboration North East and North Cumbria (ARC NENC), Northumbria University  

As a researcher, it is not every day that you get to work alongside talented artists, actors and writers. I recently had this privilege as part of the planning and development of theatre production Credit. The play was prompted by research commissioned by Gateshead Council, which showed the negative impact of Universal Credit on vulnerable claimants and staff supporting them in North East England. We were grateful to participants who shared their stories so openly and wanted to use the findings to prompt wider debates about welfare reform, beyond published academic papers.

I had limited knowledge of Universal Credit before starting the research in 2017, when community members began voicing their concerns about the roll out. I was shocked by the insights gathered during the fieldwork in 2018. Credit was the culmination of a collaboration with Cap-a-Pie theatre company, who we approached with our ideas. Unfortunately, plans for a theatre production were shelved in April because of the COVID-19 restrictions. The team worked hard to create an online rehearsed reading of part of the play, brilliantly performed by two skilful actors. Supported by a panel of knowledgeable and passionate local and national speakers, we negotiated the challenges of an online post-show discussion. We were unsure how it would go, as we joined by more than 400 people who watched the 40 minute extract from the play. Over 150 stayed for the live Q&A and discussion afterwards, providing thoughtful comments and feedback.

During the panel discussion following the evening performance, the writer, Laura Lindow, commented that she hoped the audience could “hear her own fury in the poetry”, hoping it would “smack everyone around the ears”. The reactions from the Q&A suggest that participants felt similarly moved, describing Credit as: 

“Brilliant, angry, urgent work”

“Extremely powerful and incredibly important”

“I had tears in my eyes watching this”

“Heart breaking, but very realistic. Especially poignant was the reference to starvation”

“The reference to loan sharks took my breath away, eased so gently into lives, but so destructive”

The questions, observations and exchanges with panel members were insightful and engaging. The audience challenged us as researchers to think about how to move beyond the echo chambers of online events to ensure the messages reach those in positions of power to affect change.

As a result of this screening, we have made more connections, with people who have claimed Universal Credit, and academics doing research in related areas. Maria Thompson was one of the people we met following the post-show discussion and you can read about her personal experience of Universal Credit in this accompanying blog post. We also made links with people keen to use the arts to communicate their research findings, engage others in wider debates and challenge us to act: 

“Lyrical, hard hitting, honest writing”

“Beautifully written and acted”

“Speaking truth to power is all we can do and this play was a great example”

“How do we fight negative perceptions of benefit claimants? How do we continue to show the need for a supportive welfare system?”

In the feedback, participants commented on the importance of changing negative stereotypes about claimants. At the end of the evening performance, Patrick Butler, social affairs editor from the Guardian newspaper called on revisions to UC to be made with the input of claimants who have direct experience of the system.

“For me, a decent social security system is a citizen's right. It has to be effective, it has to be humane. I think it has to be an entitlement, not a privilege or reward for good behaviour.”

We’re keen to use the play in different ways to stimulate debate and reflection. Emotions clearly have played a role in galvanising action. We have received requests to use it in staff training and to promote arts/research collaborations. As one participant commented:

“We don’t make best use of art in public health. This is such a moving and poignant play. My hope is that one day we can get it into mandated training in the NHS.”

The diversity of claimant experiences has increased enormously since COVID-19, but the stigma is far from disappearing according to debt charity Turn2Us. Recent reports by the National Audit Office (2020) and the Work and Pensions Select Committee suggest that there is still a long way to go before vulnerable claimants’ rights are protected. Perhaps this is the moment for government to show they have listened to those voices who have long campaigned for meaningful change, to ensure that Universal Credit provides the safety net that people need in times of adversity and to keep the changes to the standard allowance introduced as a result of COVID-19.

If you missed the last performance of Credit, we are planning to show more performances in 2021, so keep an eye out. We are working on a short film with extracts from the rehearsed reading of Credit and interviews with those who support claimants, who were involved in the research, script development and production. This will be available on YouTube in the New Year. We will continue our efforts to raise awareness of this important issue and look forward to working with others keen to do the same.


Acknowledgment

We are grateful to the funders, Newcastle University, Catherine Cookson Foundation and Arts Council Lottery Fund for their support and flexibility.

Images by Lindsay Duncanson

Long Covid’s Advent Calendar of Symptoms

Posted by John Mooney FFPH, Locum Consultant in Public Health, NHS Highland @StandupforPHlth

I should really start this piece with both a declaration of personal interest and a confession. Firstly, I can unfortunately count myself among the many thousands of people affected by what is being referred to as ‘long covid’. Secondly, I have shamelessly borrowed my title analogy from a fellow sufferer and infectious disease academic, Professor Paul Garner whose highly engaging and informative BMJ blogs^(1,2) on the subject have helped many to realise that they are not alone or imagining things. With another prominent ‘patient-advocate’ for the disease being the University of Southampton’s Dr Nisreen Alwan, (associate professor and consultant in public health), you might be forgiven for thinking that this is a virus with a special affinity for public health professionals! Now that would be clever but regrettably it is clearly far less discerning.

Image credit: The Spectator magazine and the illustrator Richard Jolley

In keeping with the spirit of the season, my own advent calendar of symptoms has popped open several new windows this week, most notably ‘pins and needles’ and joint pains. Both have arrived on top of the commonly experienced and more worrying long-term chest pains (eight months in my case) and irregular erratic heart rate (managing over 200bpm at rest on one occasion (the normal range for healthy adults is between 60 and 100 bpm). This combined with a rogue ECG readout (Electrocardiograms test the heart's rhythm and electrical activity) in a local A&E department earned me an unscheduled two-night stay in hospital six weeks ago. Seemingly intractable tinnitus has become another constant ‘companion’.

Resting heart rate over 200 bpm &
 oxygen saturation below optimal 

Thanks to my local NHS Hospital, my symptoms were comprehensively investigated and I continue on the ‘recovery’ journey - if recovery is not too optimistic a label. Recent findings from several studies on the longer term complications of the disease have however made for uncomfortable reading, all the more so for being carried out in people whose symptoms had generally not been particularly severe.

In the first of these, a Frankfurt based cardiac MRI study⁽³⁾ recruited 100 cases of non-hospitalised patients in whom 78% were found to have disruption to heart muscle function and 60% ongoing heart tissue inflammation. Given that the number of ‘milder’ cases will always inevitably far outweigh the numbers hospitalised or who tragically do not survive, the sheer scale of the potential public health disease and premature death burden (if heart health is undermined), begins to look very concerning⁽⁴⁾.

Receiving supplemental oxygen in A&E 6 months after
 initial symptoms (mask displaced to drink)

Perhaps more worrying still, ‘long covid’ does not seem to restrict its attentions to the heart and lungs, with another study finding evidence of multiple organ damage in 201 people with a largely mild course of disease, 70% of whom had damage in one or more organs, including kidneys (12%), liver (10%), pancreas (17%) and spleen (6%), as well as heart (32%) and lungs (33%) four months after initial symptoms⁽⁵⁾. 

Adding further to this complex picture was a news release about a study this week of ten patients at Oxford University in which a novel scanning technique was used to successfully identify damage not picked up by conventional scans⁽⁶⁾. Eight of the ten patients still experiencing shortness of breath three months after infection (none severe enough to be hospitalised), had evidence of hidden lung damage. The new technique will now be repeated with a much larger sample.

These worrying findings about potential long-term damage are already prompting some big-picture questions: What proportion of people who only had very mild disease will go on to develop organ damage? Proportions like 60% and 70% could potentially translate into a staggering public health disease burden with very substantial implications for health services. Devastating though the considerable loss of life has been, the eventual population impact clearly has the potential to be far greater⁽⁴⁾. 

As always with such matters however, it is never especially helpful or productive to dwell too long on ‘worst case scenarios’. For my own part, I am fortunate to be in a non-physically demanding job with an understanding employer. The prospect of accommodating such an unwelcome guest as long covid in a physically strenuous job or on a zero hours contract (or both) does not bear thinking about. Long covid clearly has the potential to further exacerbate the substantial inequalities in health and social outcomes that have so clearly characterised the current pandemic.

Significant unanswered questions also remain around which population groups are most likely to be affected by long covid: do they correspond for instance to those most at risk of not surviving? Early indications are that this might not be the case, at least as far as age or gender is concerned: while there has been no systematic population prevalence study, long covid seems to disproportionately affect younger and middle-aged adults, and females over males. For some this latter observation lends credence to long covid being ‘auto-immune’ in origin since women tend to be at higher risk of such diseases (lupus and rheumatoid arthritis being two prominent examples).

Would vaccination be helpful for those affected? Or might it be dangerous given the likely involvement of a misdirected immune response as the basis for the condition? In these respects it’s extremely encouraging that long covid is receiving high level research attention that seems to be already helping to unravel its impact, causes and effects. Such efforts may ultimately be at least as valuable as the impressive progress with vaccine development.

Returning to the advent calendar of the title, the wonderful thing about advent is that there is a season of joy and festivity at the end of a dark midwinter month. Here’s hoping that there is an end in sight also for the many afflicted by long covid.


References:

1. Paul Garner on long haul covid-19—Don’t try to dominate this virus, accommodate it - The BMJ September 4, 2020. https://blogs.bmj.com/bmj/2020/09/04/paul-garner-on-long-haul-covid-19-dont-try-and-dominate-this-virus-accommodate-it/
2. Paul Garner: Covid-19 and fatigue—a game of snakes and ladders - The BMJ May 19 2020. https://blogs.bmj.com/bmj/2020/05/19/paul-garner-covid-19-and-fatigue-a-game-of-snakes-and-ladders/
3. Puntmann VO, Carerj ML, Wieters I, et al. Outcomes of cardiovascular magnetic resonance imaging in patients recently recovered from coronavirus disease 2019 (COVID-19). JAMA Cardiol. Published online July 27, 2020. doi:10.1001/jamacardio.2020.3557
4. Mooney, JD, Ling J. Long covid: a potential longer term morbidity time bomb?: Rapid response to: BMJ 2020; 371. doi.org/10.1136/bmj.m4470
5. Dennis A, Wamil M, Kapur S, Alberts J, Badley AD. Multi-organ impairment in low-risk individuals with long COVID. https://www.medrxiv.org/content/10.1101/2020.10.14.20212555v1.full.pdf
6. BBC News: Covid-19: Lung damage 'identified' in study: 1st Dec 2020 https://www.bbc.co.uk/news/health-55017301

Acknowledgement to high profile fellow awareness raisers of #LongCovid:

Professor Paul Garner: Liverpool School of Tropical Medicine: @PaulGarnerWoof

Dr Nisreen Alwan: University of Southampton @Dr2NisreenAlwan

Surely men should have their day too...

Posted by Shelina Visram, Senior lecturer in public health, Newcastle University (on behalf of the BoroManCan research team)

*Trigger warning: mental health and suicide

Unless you’re a fan of the comedian and writer Richard Herring, you may not have given much thought to International Men’s Day. For almost a decade Herring has raised huge sums of money for the domestic violence charity Refuge by spending International Women's Day (8 March) answering each person who asks on Twitter 'But when is International Men's Day?' He then follows up the enquiries on International Men’s Day (19 November) to raise money for CALM, the Campaign Against Living Miserably. 

It’s genuinely today. What are you going to be doing? Would you say the problem is that men are only interested in IMD when they think there isn’t one, but don’t want to do anything when it comes around? Genuine question. https://t.co/nAzbGtqBNE

— Richard K Herring (@Herring1967) November 19, 2019

Presumably, these people are under the illusion that there is no dedicated day to celebrate men, yet International Men’s Day was founded in 1999 to do just that. The theme for 2020 is ‘Better health for men and boys’ with the strapline ‘Laugh stronger, live longer’, but many have struggled to find reasons to be cheerful this year. Although women are more likely to suffer the social and economic consequences of the pandemic, being a man greatly increases the risk of death from COVID-19.^(1,2) Men tend to have many underlying health conditions that worsen coronavirus and generally contribute towards lower life expectancy. Our region (North East England) is likely to see high numbers of COVID-related deaths but also significant impacts in terms of poverty and unemployment, given that the North of England’s economy has been hit hardest by the pandemic.⁽³⁾

We don’t yet know what long-term impact the lockdowns will have on mental health and wellbeing, but early reports suggest an increase in suicide. Globally, men were almost twice as likely to die by suicide as women were before the pandemic.⁽⁴⁾ Harmful masculine norms – in other words, what it means to be a man – are a key driver of suicidal tendencies and encourage risk-taking behaviours like drinking and smoking. These norms often stop men from seeking medical help and have a knock-on effect on women’s lives, placing increased responsibilities on them to care for men’s wellbeing.⁽⁵⁾ They also affect women in other ways, for example, there have been reports of a dramatic increase in domestic violence during the pandemic.

Today is #InternationalMensDay, checking in on a mate only takes a few seconds, just a text, or a stupid tweet, or a quick call can make all the difference to a mate who may be going through a hard time. So give it a go! For more information there's Alan... pic.twitter.com/Vcnuxt2j71

— Dave (@davechannel) November 19, 2019

So, not much to celebrate this year then? Well, actually, there is some cause for optimism. Men’s health is starting to move up the agenda in policy and practice. I was involved in an evidence review and expert meeting to inform the first World Health Organization strategy on men’s health and wellbeing in Europe, which was published in 2018. World Health Statistics were separated by sex from 2019 so that we can better understand gender differences that affect health outcomes. There are also a number of initiatives that have adopted gender-sensitive approaches to actively address masculine norms, for example, through rugby or football.^(6,7) In the North East, the BoroManCan campaign aims to inspire positive behavioural, health and culture change in Middlesbrough, where four out of five suicides involve men and the rate of male suicide is the second highest in the country. Various activities have been developed in partnership with community groups, including Barbers for Health, young men’s workshops in schools, and a one-day training course to develop Men’s Health Champions. Many of these activities are on hold because of the pandemic but the BoroManCan website, podcast and social media pages continue to share stories from local men and services, as well as providing advice and links to further support.

To infinity... and beyond!

I’m working with a team from Newcastle, Durham and Teesside Universities to develop a programme of research around men’s health and wellbeing. We were recently awarded funding from the NIHR Applied Research Collaboration (ARC) North East & North Cumbria to conduct research that will help practice partners begin to understand what has worked so far in relation to BoroManCan and where improvements can be made. Findings and outputs will be shared widely so they can be used to inform the development of similar initiatives aimed at addressing gender equality. I’m looking forward to being part of efforts to change the conversation around men’s health and wellbeing, not least because my own little man celebrates his birthday the day after International Men’s Day. Hopefully by the time he’s older the phrase ‘man up’ will mean something quite different, like being comfortable with your emotions and having the confidence to ask for help when you need it. 

References

1. Burki T (2020). The indirect impact of COVID-19 on women. The Lancet Infectious Diseases, 20(8): 904-905.

2. Williamson EJ, Walker AJ, Bhaskaran K et al (2020). Factors associated with COVID-19-related death using OpenSAFELY. Nature, 584: 430–436.

3. Bambra C, Munford L et al (2020). COVID-19 and the Northern Powerhouse, Newcastle-upon-Tyne: Northern Health Science Alliance. https://www.thenhsa.co.uk/app/uploads/2020/11/NP-COVID-REPORT-101120-.pdf.

4. Dearden L (2020). Coronavirus: Mental health incidents rising during UK lockdown, police say. The Independent, 6 April 2020. https://www.independent.co.uk/news/uk/home-news/coronavirus-suicide-rates-ukmental-health-support-a9451086.html.

4. WHO (2014). Preventing suicide: A global imperative. Geneva: World Health Organization.

5. Marcos-Marcos J, Mateos JT, Gasch-Gallén À, Álvarez-Dardet C (2019). Men’s health across the life course: A gender relational (critical) overview. Journal of Gender Studies, epub ahead of print 18 December 2019.

6. Witty K, White A (2011) Tackling men's health: Implementation of a male health service in a rugby stadium setting. Community Practitioner, 84(4): 29-32.

7. Gray CM, Wyke S, Zhang R, et al. (2018) Long-term weight loss following a randomised controlled trial of a weight management programme for men delivered through professional football clubs: The Football Fans in Training follow-up study. Public Health Research, 6(9): 1-14.

Supporting family carers of people living with dementia in a pandemic

Posted by Mark Parkinson, PhD in Health Psychology, Northumbria University

Social coping: offering family carers a lifeline in turbulent times

Despite our enduring efforts to battle COVID-19 and the headlines and attention the pandemic rightly warrants it is important not to lose sight of some of the separate public health issues which not only continue to grow apace in the background but may also be made worse by the social impact of the virus. Among the issues in danger of being overlooked is how the UK will respond to the growing number of people living with dementia which is set to reach one million by 2025.¹

Presently, family carers provide the bulk of care and reliance on family care is becoming even more essential given the lack of formal care available² and the Europe-wide shift away from reliance on formal care and towards ‘ageing in place’/ care in the community.³ However, a key issue is the high level of long-term stress family carers have to endure⁴ as a result of dealing with a combination of financial, social, mental and physical challenges over long periods of time and how this often leads to family care becoming unsustainable with reliance on formal care the only option. Family carers currently face a vicious cycle that threatens to derail family care itself-despite the wishes of carers and carees:

A key question is how this cycle can be avoided. Crucially, it is not the stress that threatens to derail family care, but how well family carers can COPE with stress. A critical coping strategy is carers’ capacity to seek out and receive effective emotional and practical support, particularly at times when they are most in need of it. This kind of coping strategy is called social coping (SC) and has been found to be effective in safeguarding mental health⁵ due to the positive interactions, support and assistance it can deliver.⁶

However, there is a pressing need to better understand what works to promote social coping. This calls for a deeper understanding of what helps or hinders SC and how this knowledge can be applied by providers of formal health and social services, together with the voluntary and charity sectors to promote social coping to make the family care of people living with dementia sustainable.

What we did

Our research, based on work carried out as part of a Fuse sponsored studentship, investigated ‘What works to support family carers of people living with dementia’. Coping⁷ and more specifically social coping⁸ was identified as important to ‘what works’ and this prompted follow-up post-doctoral research to investigate SC further. The findings (so far) can be found in our recently published article⁸ which highlights the need for formal providers to be aware of six key hindrances to family carers’ use of this important coping strategy:

Achieving a better balance between what helps and hinders the adoption of social coping is critical to promoting it and also pivotal to ensuring the long term sustainability of family care of people with dementia. The full report⁸ (briefly outlined here) was presented by the Chairman of Dementia UK to Helen Whately, the Minister for Care at Department of Health & Social Care, on 3 November. This is a work in progress and follow-up is already underway to reveal further insights into social coping theory. For example, how social coping might be used alongside other helpful coping strategies, the pinpointing of carer coping strategies that could be unhelpful in the long term, and the deeper exploration of how providers (health & social care, allied health care services and voluntary organisations) can put social coping into practice, including improving opportunities for carers and carees to socialise.

In the current climate it has never been more important to deepen our knowledge of coping and to separate carer coping strategies which are helpful, and lend themselves to making family care sustainable, from those that are unhelpful. Providing long-term family care for people living with dementia has never been easy, but the arrival of COVID-19 means family carers now need the additional lifeline of improved external support and the right incentives to accept this support⁹ if they are expected to navigate especially turbulent waters.



References

1. Prince, M., Knapp, M., Guerchet, M., McCrone, P., Prina, M., Comas-Herrera, A. & Rehill, A. (2014). Dementia UK: Update Second Edition. Report produced by King’s College London and the London School of Economics for the Alzheimer’s Society. Retrieved from: http://eprints.lse.ac.uk/59437/1/Dementia_UK_Second_edition_-_Overview.pdf 
2. Alzheimer’s Society. (2020). Facts for the media. Retrieved from: https://www.alzheimers.org.uk/about-us/news-and-media/facts-media
3. Glasby, J., & Thomas, S. (2018). Understanding and responding to the needs of the carers of people with dementia in the U.K., U.S. and beyond. Birmingham: University of Birmingham Press.
4. Fonareva, I., & Oken, B. S. (2014). Physiological and functional consequences of caregiving for relatives with dementia. International psychogeriatrics/IPA, 26(5): 725.
5. Norris, F. H., & Stevens, S. P. (2007). Community resilience and the principles of mass trauma intervention. Psychiatry: Interpersonal and Biological Processes, 70(4): 320-328.
6. Lee, C. Y. S., Anderson, J. R., Horowitz, J. L., & August, G. J. (2009). Family income and parenting: The role of parental depression and social support. Family Relations, 58(4): 417-430.
7. Parkinson, M., Carr, S. M., Rushmer, R., & Abley, C. (2016). Investigating what works to support family carers of people with dementia: a rapid realist review. Journal of Public Health. DOI:10.1093/pubmed/fdw100.
8. Parkinson, M., Carr, S.M. & Abley, C. (in press). Facilitating social coping-‘seeking emotional and practical support from others’-as a critical strategy in maintaining the family care of people with dementia. Journal of Health & Social Care, 00:1-12. http://dx.doi.org/10.1111/hsc.13159 
9. Egan, K. (in press). Digital technology, health and wellbeing and the COVID-19 pandemic: it's time to call forward informal carers from the back of the queue. In Seminars in Oncology Nursing. https://doi.org/10.1016/j.soncn.2020.151088