Bringing the voice of lived experience and community learning into research

Posted by Angela Broadbridge, Peer Research Lead, The Young Foundation (former Research and Evaluation Lead, Fulfilling Lives Newcastle Gateshead)

“There’s something really interesting in our data here, we don’t quite have the full picture, let’s talk to some people to puzzle it over more.”

This is something I hear myself or the team at Fulfilling Lives Newcastle Gateshead (FLNG) say really regularly. We’re an 8 year National Lottery Community Fund learning programme working to improve the lives of people facing multiple disadvantage and build a trauma-informed approach within the services that supports them. We have a wealth of data from supporting over 250 people locally, and we work with a team of Experts by Experience, people with lived experience working to bring about change across the systems they have been through, using their voices to be heard across different platforms.

Fulfilling Lives Newcastle Gateshead Experts by Experience Network co-design session

As the programme has developed our relationship with Fuse has changed and connections have grown, we now do much of our ‘puzzling over’ with Fuse colleagues! I joined Fuse as an associate member back in 2017 when I took up my post as research and evaluation lead for FLNG. I attended Fuse Quarterly Research Meetings to build up my contact base and learn from others operating in this interesting space between frontline practice and research and learning. As I began to see frontline practitioners come into those sessions, I invited some of our own frontline staff to join me to share their experience of working with people who have experienced complicated and challenging circumstances and struggled navigating systems.

I want to highlight some of our learning from building collaborative relationships through and with Fuse researchers, as this has proved to offer new platforms for the voice of lived experience not just to be heard in research, but to set research agendas and co-produce work alongside academics.

In 2018, Dr Sheena Ramsey (co-lead of the Fuse Healthy Ageing Research Programme) invited me to attend a Research Hub Initiative event with Public Health England and I pitched a seed grant funding idea with support from Fuse researchers. Our recently published work on deaths in the multiple complex needs community, an issue our Experts by Experience network encouraged us to explore, was borne out of this funding. We have since joined up with Sheena again in a new study identifying effective and sustainable interventions to improve the oral health of adults with severe and multiple disadvantage. This collaboration works because Sheena and other researchers associated with the study took the time to really get to know our programme, and our Experts by Experience network. Sheena visited us at the men’s accommodation project where we were based a few years ago, met some of our frontline staff and also built trusting relationships with the network, introducing us to academic and practice colleagues to further situate our programme learning within Fuse.

Brainstorm - what makes a good collaboration?

While this was happening, Prof Susan Carr (Fuse Associate Director), set up a meeting with her team at Northumbria University and FLNG peer researchers to talk about projects we were both working on and to explore collaborations. She also arranged for our peer researchers to present early findings from their work to Prof Kevin Fenton, Public Health Regional Director for London, and it was at this point that we started to see how people with lived experience could be involved in local research and practice beyond being participants. There were opportunities for genuine collaboration and learning together.

Fast forward to early in the pandemic and we were involved in two applications to the NIHR Applied Research Collaboration (ARC) for the North East and North Cumbria. One of these applications was exploring food insecurity with Fuse Associate Dr Steph Scott, and Kevin Dobson and Keith Gibson from FLNG’s research team set about exploring our own programme data around foodbank use. Our Lottery funded programme is quite unique in that we have a personal budget fund to use to support people on the programme with anything from their basic needs, including food and accommodation, to more creative uses like buying art materials or enjoying an afternoon at the cinema. Once again we had a ‘there’s something interesting here’ moment.

I sent Steph an email saying:

“we’ve worked with 259 people in Newcastle Gateshead over 6 years and of these 127 individual client records contained a reference to food insecurity or food poverty. We had 14 unique cases, interestingly all female, whose notes had 10 or more references to food poverty and we can see from the notes frequent references to benefits being suspended, people not eating, or missing the foodbank opening times.”

Working with partners to surface system barriers and solutions

The conversation that followed led to us talking to the Experts by Experience about food insecurity, they were similarly enthused by the topic and together we made a successful joint application to the Catherine Cookson Foundation within Newcastle University for a project exploring mutual aid during Covid-19. Using our Lottery funded programme learning and building on our experience co-producing research in other projects with Fuse researchers we are working with a group of Experts by Experience who have developed research questions to start a listening exercise with their peers around their experiences of food insecurity, mutual aid and Covid-19.

This relationship with Fuse is evolving and changing, and it now feels like a relationship truly rooted in the principles of co-production. Our team report that they feel their frontline experience is listened to and helps shape research projects, and our peer researchers are involved in numerous projects and have the confidence to approach Fuse researchers to develop new pieces of work building on the issues that are important to them and their communities. As our programme comes to an end in March 2022, the Experts by Experience network is now thinking about its legacy, we very much hope to continue to build on this strong foundation for collaboration and learning.

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.