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

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. Capture taken from the BBC News website, 18 April 2019, HEALTHWATCH/NHS ENGLAND The template for the letters is drawn up by Public Health England (https://www.bbc.co.uk/news/uk-england-tyne-47946395).

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

Does reaching the ‘hard-to-reach’ mean leaving traditional academia at the door?

Angela Wearn, PhD Researcher, Department of Psychology, Northumbria University

“You tend to find the ones that are protesting and telling you to go and get your smears are the ones that have their cushy little jobs and that lovely flash car that they can just jump in and dive down to the doctors”

From all the conversations I’ve had throughout my research career, this is one of the quotes that has stuck with me the most. For over three years I have been working on my doctoral research, conducted across Newcastle, which explores barriers to cervical screening participation in areas of high relative deprivation. We know that uptake rates tend to be lower in areas of socioeconomic disadvantage, but reviewing existing literature showed very little insight from women who lived within these communities themselves. Incidentally, I am one of these women. I grew up, and still live, within a neighbourhood which, according to the Index of Multiple Deprivation, falls within the 10% most deprived areas in the country. It’s therefore no accident that I ended up with a programme of research which aimed to prioritise the voice of this community.

Graffiti walls can be a simple and effective way of starting conversations

Initially, I had dreams of a wonderfully participatory project, where I formed a steering group and we worked together to find answers and seek solutions. As often happens in research, time ticked on and it didn’t work out the way I had planned. My participatory ideals had to take a backseat for a less time-consuming participant-researcher approach. I suspected my ‘insider’ status might open doors for me and to be fair, it did. I found myself being able to quickly connect and build a rapport with others when I discussed my own background and why I wanted to do this project. However, getting to the point of even having these conversations was by no means easy. I spent days, weeks, months trying to speak to community groups, charities and community members about my research. Some were very open and interested, others were not. I attended community get-togethers handing out cakes alongside research information, making ‘graffiti walls’ with post-its, even chatting about life over freshly made biryani at a cookery club. Actually, these were the most rewarding and enjoyable moments over the past three years, but the more I did this the more I felt I was straying from what academia expected of me. I also began to feel my status as an academic researcher was a hindrance to what I was aiming to do at community level. For a lone PhD researcher, bringing together these two worlds, at times, felt completely impossible.

"community get-togethers...were the most rewarding and enjoyable moments over the past three years, but the more I did this the more I felt I was straying from what academia expected of me"

Attending community events was a great way to connect with 

people who were otherwise unfamiliar with research

The quote at the beginning of this blog was when it all clicked into place. Although we were talking about cervical screening, I acknowledged something that I had already known all along - the same issues of accessibility and trust apply to involvement with academic research. If I put my working-class hat on for a minute, academic research feels neither accessible nor promotes interpersonal trust. From the outside, academia appears to be filled with people who think they know better than you, patronising you, sometimes even using you to showcase the poor decisions people make in life. I had to work hard to reassure people that I wasn’t there to pass judgement on their screening status. I’m still not sure many believed me. ‘Eat a healthy diet’, ‘Stop smoking’, ‘Engage in physical activity’, ‘Attend your screening appointments’. These are the messages that come through, focusing on the individual and discounting all the structural and social barriers that exist for people living in communities like mine. If you are trying to figure out how to afford the weekly food shop, the kids have come home with a tear in the coat you only bought a fortnight ago and you’re worried about not getting enough work from your zero hours contract, there is no mental space for ‘living your best life’ (and certainly no space for sitting with a stranger from some university taking part in a research study).

Those living in socioeconomically disadvantaged areas are often described as ‘hard-to-reach’. This often implies that despite best efforts to reach out, these groups are disinterested and disengaged. I tend to believe the reverse is true. Some groups are hard to reach because academic research is too disengaged from the community. I know of many academics who are so obviously committed to tackling the avoidable and unjust disparities in health, and for this reason I do feel positive for the future. However, as someone who is positioned in between the ivory towers of academia and the working-class neighbourhoods at home, I know there is still a lot of work to do. There is a long history of mistrust and marginalisation to put right. If we are serious about tackling inequality and involving so called ‘hard-to-reach’ groups in research, then we need more focus on developing trust and togetherness…and occasionally, this might mean leaving traditional academia at the door.