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Working with the AcaMedic students to produce research

Megan Armstrong8 October 2021

This blog post is written by Melvyn Jones (A Clinical Associate Professor in General Practice), Surinder Singh (a Clinical Senior Lecturer at PCPH), and See Chai Carol Chan and Jack Shi Jie Yuan (both medical students).

This summer a very slowly gestating project came to fruition with the publication in the BMJopen of a study exploring the influences at medical schools on students with respect to GP career choices (see here). Surinder Singh and myself quite a few years ago (2017) thought that an anthropological approach using our students to capture these drivers of student carer choice might be quite a useful addition to the field, on the back of the NHS Wass report “By choice not by chance”.  At the same time the AcaMedics group (a multi institutional collaboration to support students developing research skills) was looking for potential projects. We set our plans and were lucky to be selected by two highly able UCL medical students (Jack Shi Jie Yuan  and See Chai Carol Chan) to work on the project.  Meanwhile across London at Imperial a very similar project was being undertaken.  It took Sophie Park to join the dots and make this a cross institutional project- key to improving the generalisability of our findings.

Getting ethics was tricky though.  Would we need consent to use quotes from someone making pejorative comments about general practice as a career?  Clearly this would never happen, but thankfully the ethics committee agreed that the anonymised observation and reflection occurring away from the clincal setting was acceptable.

Rolling forward via presentations and posters at the UCL Education conference in 2018, the Trainees in the Association for the Study of Medical Education (TASME 2018)  and SAPC Madingley hall conference helped us shape our thinking.  Writing workshops helped refine our argument. However, publication proved much more difficult with a straight rejection and then a very long drawn out peer review, eventually leading to another rejection.   A key motivation for our students was to have something to put in their publication box on their NHS junior doctor Foundation Programme application, but by this stage they had all graduated and moved on.  It took a final push by Ravi Parekh at Imperial assisted by myself and Surinder to have a good fresh look at the manuscript, the data and the peer reviews and to decide it was with another go.  So in the summer 2021 it finally appeared.

What are the messages from the study?   Some of the findings were there before- students feeling a GP career was the default, the fall back position. For students used to competing for everything this seems like defeat. The interesting observation was the student’s perception of the internalised process of being a primary care physician. The fact that the GP sits and the patient comes to them was perceived as being too passive to students used to the swarm of the ward round buzzing around hospitals. The internal process of thinking about clinical decisions such as how to balance treating a patient’s heart failure without worsening their kidney function or making them fall over as their blood pressure drops, was invisible to the students. It was only when the students were sitting in the consulting hot seat did they begin to see the considerable intellectual challenge to many primary care consultations.   But were they exposed to “bad mouthing” of general practice?  Yes to some extent, but interestingly they were also exposed to hospital clinicians who talked up the role of general practice and the challenges to doing it well.

It was always challenging for students to undertake their own research project (see here). However it is a great shame that students appear to be completely marginalised since Covid when it comes to undertaking research projects. Recent new guidance from the NHS Research Authority prevents undergraduates from conducting research.  Thus, perhaps the ultimate conclusion for our study – which has come to light after publication – is that we’re faced with far fewer opportunities to prepare and encourage the next generation of would-be researchers.

Working with students on research projects is a however great experience but the time frame for ethics and sluggish peer review processes can be a real issue when they have fixed deadlines like revising for finals, moving on as junior doctors and the almost complete lack of headspace to think about research when they are enveloped in working as an NHS foundation doctor.  Find a project however, with a realistic outcome and timeframe and you will find a rich seam of motivated talented individuals who are keen to contribute.

Opinion piece: My experiences so far of hybrid working at the PCPH department

Megan Armstrong1 October 2021

Dr Sarah Griffiths, Senior Research Fellow and Study Manager of
PriDem: Best practice in primary care led dementia support

In this blog, Sarah Griffiths discusses her experiences of beginning the hybrid working at the PCPH department.

Emily Spencer (Research assistant, PriDem) and I have started coming into the department for two days a week.  We have been together in the office twice so far and have seen benefits. Both being new to UCL, it has been an important step in starting to feel a sense of belonging to a department. I think being in-person for some of the time is enhancing the development of an effective working relationship. At the start of each week, we plan weekly goals and have started to prioritise tasks that would work best in-person for office days. Enjoying everyday conversation just for the sake of it, without this being a prelude to a meeting has been a novelty, and the potential for using bodily movement for ‘acting out’ anecdotes or being unaware of what our faces are doing, has created a much-missed sense of communicative freedom. Going for coffee together, airing thoughts as they occur and having spontaneous discussions (rather than having to compose them in an email or wait until the next Teams meeting), are all great benefits of hybrid working and breed creativity. It can also be easier to read and respond to people’s emotions when in person and there is nothing like a co-present giggle for enhancing well-being.

It is early days, and there haven’t been many people around in the department yet, but some chance meetings in the kitchen and corridor have led to spontaneous conversations with new people and a chance to connect with the wider team.

Before the pandemic I loved rare WFH days. To me they were luxury; a chance to switch off distractions and ‘get in the flow’, with all the benefits of being able to get washing done, cuddle the dog and eat whole packets of biscuits unobserved. However, since this became the norm, the enjoyment has gradually faded for me. I’m fortunate that I can find space to work, away from family members, and I don’t have children living at home. Even so, at times I’ve felt trapped by lack of variety. Like many people I’ve been super productive, but have often worked crazy hours, due to a lack of natural breaks to travel to/from work, and no escape from the ‘workplace’.

I live in Cornwall! It takes me three and a half hours to get to London and I’m lucky because I have accommodation when I am there. I am working out ways of working on a train when the internet is poor, saving tasks for travel times that don’t require online connection. Having a snooze and recharging my batteries has also been on my to-do list.  I have noticed that coming back to Cornwall after my London stint has led to appreciating and enjoying home working all over again.

However, there are issues to overcome to optimise the hybrid working experience, and everyone’s situation is unique. Although currently Emily and I have started fulfilling the UCL guidance of aiming for 40% embodiment, this guidance is somewhat ambiguous and has been variously interpreted. It will not be possible in the literal sense once recruitment starts. Our working practices will vary week to week, in terms of where we need to be and how we approach interactions. Some research activities will be in-person and some remote. However, the challenges of background noise and confidentiality mean remote activity will not necessarily work when carried out in a shared office. We are going to have to negotiate how we do this, building in flexibility and ensuring that we have the right equipment and office ventilation. Headphones and suitable microphones can help with confidentiality and researchers keeping their own vocal volume to a minimum, although many of our participants will have reduced hearing and/or find background noise highly distracting.  The current requirement to wear masks in shared offices adds to the challenge of video calls, especially as people living with dementia and those with hearing difficulties gain communication support from seeing people’s faces.

These challenges have led us discuss future arrangements for hybrid working within our team. The 40% embodiment guidance includes discussing individual circumstances with line managers. We hope that this can be highly flexible, with clearer guidance around managers using discretion and trust; monitoring how well research staff are engaging in remote versus in-person working. Importantly, this will entail balancing efficiency with wellbeing and maintaining a sense of belonging. Fatigue is one to keep an eye on as people return to the world of commuting. Depending on the person, the team and the tasks at hand, researchers may want to be embodied for a whole week at time, but then balance this with a week of working from home. I hope that we can continue this conversation about how we enter the new phase of hybrid working.

 

Developing educational leadership skills as an early career academic

Megan Armstrong24 September 2021

Dr Danielle Nimmons, GP and NIHR In-Practice Fellow

I am a GP, researcher and educationalist at UCL and I thought I would document some of the milestones in my early academic development. As part of my training I was fortunate to be awarded an NIHR Academic Clinical Fellowship (ACF), which has been an amazing opportunity to develop my research and teaching skills.

My research has included studies on frailty, dementia and Parkinson’s, for example conducting reviews. However, I knew at the start of my ACF that as well as research, I wanted to gain teaching experience and achieve outputs, such as accreditation as Fellow of the Higher Education Academy / HE Advance (FHEA). At UCL we are very fortunate to be encouraged to develop both research and educational skills. Below I outline the main teaching I was involved in, what I got out of it and suggestions/tips for others who may be interested in developing educational leadership skills as an early career academic.

Teaching experience at UCL

As a GP registrar in my 3rd year (ST3) I became a module lead for Preparation for Practice (PfP), part of the Year 4 MBBS programme. My roles included designing simulated patient cases for the students, direct teaching, supporting other GP tutors and administration staff, course evaluation and quality assurance. I also led the transition from face-to-face delivery to online as Covid hit, developing recorded (asynchronous) and live webinar (synchronous) material.

In my 4th year of training  (ST4) I decided to get experience of small group teaching in my GP practice as a Medicine in the Community (MIC) tutor, for two UCL medical students over the academic year. Students spent 10 days in my GP practice in total, and I got to see them improve clinically while I gained personal tutoring skills. Sessions included an interactive workshop on a disease /condition, formative assessment in the shape of MCQs, role play and patient interactions between students and my NHS patients who gave up their time to help.

What I got out of it

I love teaching and find it incredibly rewarding! The variety of teaching experiences helped break up my academic time and focus when working on different project. These experiences included:

  • Face to face teaching,
  • Online teaching,
  • Developing teaching material,
  • Evaluation teaching activities and
  • Quality assurance

These experiences also contributed to my successful fellowship applications and being awarded a UCL Excellence in Medical Education award (EMEA) (see here).

I was also fortunate to get some outputs, including presentations, awards and publications: Medical student mentoring programs: current insights and The UCL ‘Preparation for Practice’ teaching programme. 

Reflections

Balancing GP training (exams and completing my compulsory training portfolio), research and teaching can be challenging, at times I definitely felt like I was juggling many balls and just about managing not to drop any! The extra academic day in my 4th year helped but only because I taught less on the PfP programme, which gave me more time do practice based (MIC) teaching. Having boundaries and recognising when my plate was full also helped. For example, during my final GP (MRCGP) exams I tried not to do too much else.

Teaching was most enjoyable when I linked it to my research. This included selecting patients from under-represented groups for students to interact with in their GP teaching sessions, which complemented my clinical research project exploring how people from under-represented groups self-manage Parkinson’s disease. As my teaching was informed by the research I was doing, it also saved time when it came to lesson planning.

Finally, most of my academic time was during the pandemic and teaching not only helped me network with other academics within the department but also with hospital registrars doing acute medicine and acting as teaching fellows, academic pharmacists and academic clinicians from a range of specialties based at the medical school main campus.

Tips

Tips for other early career academics:

  1. Say ‘Yes’ to opportunities
  2. Recognise limitations; i.e., Time! It is impossible to do everything but you can make a real impact to programmes if you focus on a select few.
  3. Look for a variety of educational experiences. For example, online vs in person teaching, design teaching vs evaluation
  4. Try and get some outputs, e.g., presentations, higher education fellowships like the FHEA
  5. Link it to your research!
  6. Discuss with current ACFs and module leads to get an idea of what is best for you.

I would encourage all early career academics to gain teaching experience and hope this has inspired some to do so!

References

  1. Nimmons D, Hatter L, Davies N, Sampson EL, Walters K, Schrag A. Experiences of advance care planning in Parkinson’s disease and atypical parkinsonian disorders: a mixed methods systematic review. Eur J Neurol. 2020 Oct;27(10):1971-1987. doi: 10.1111/ene.14424. Epub 2020 Jul 30. PMID: 32603525.
  2. Nimmons D, Giny S, Rosenthal J. Medical student mentoring programs: current insights. Adv Med Educ Pract. 2019 Mar 4;10:113-123. doi: 10.2147/AMEP.S154974. PMID: 30881173; PMCID: PMC6404673.
  3. Nimmons D, Jones MM. The UCL ‘Preparation for Practice’ teaching programme. Med Educ. 2020 Nov;54(11):1077-1078. doi: 10.1111/medu.14326. Epub 2020 Sep 3. PMID: 32885435.

Primary care in the COVID-19 era: do we still practice preventive care?

Megan Armstrong14 September 2021

Alaa Alghamdi is a GP who is undertaking a PhD at UCL

This blog is by Alaa Alghamdi and tackles the practice of preventive care during the COVID-19.

To begin this blog, I have shared a medical case study that clearly addresses the topic at hand:

A 55-year-old male Saudi professor, married with five children, unknown to have any medical illness and not on medications. He presented to the emergency department (ED) complaining of unintentional weight loss of 10 kg in the last six months associated with fatigue. Initially, he attributed his symptoms to the psychological impact of the pandemic. Because of the fear of risk exposure to COVID-19 alongside lockdown restrictions of visiting health facilities for non-emergency, he avoided seeking medical help until he remarked jaundice. In the ED, a CT scan with IV contrast was performed. It showed circumferential wall thickening involving the short segment of the ascending colon with pericolonic enlarged lymph nodes and numerous hepatic lesions indicating metastasis. He was diagnosed with stage 4 colon cancer and referred to a tertiary specialist hospital. Unfortunately, palliative care was the only option in his late presentation, and he passed within two months of his diagnosis.

This case might be one of many other cases that have been affected by disrupted healthcare during the pandemic that prioritised COVID-19 cases. Cancer could be one of the preventable deaths through appropriate screening and early detection (1). Screening is effective for both early detection and prevention in 80% of colorectal cancers (2) and has the potential to reduce colorectal cancer deaths by 60% (3).

Preventive screening is a vital part of primary healthcare practice (PHC). As with many other countries, Saudi Arabia (SA) has started preventive care services early with various programmes delivered through PHC (4). However, like many other countries, the Saudi Ministry of Health (MOH) has diverted resources to healthcare facilities to be able to manage the high numbers of COVID-19 patients. Although SA’s response to the pandemic places it at the highest ranks on international indexes (5) and the second at NIKKEI COVID-19 recovery index (6), the WHO showed that COVID-19 significantly impacts health services for non-communicable diseases (NCDs) globally, including SA (7).

My PhD project aims to explore the patient experience with PHC to provide the appropriate engagement and utilisation of PHC in SA. One of the key issues I have been exploring is the influence of COVID-19 on patient engagement with PHC. An important emerging point is the preventive screening during this pandemic for non-COVID conditions. There are growing concerns that have been arisen by using the online health services, which might have an indirect impact on health providers’ practices towards preventive care. In SA, many online health services have emerged throughout the pandemic, including telemedicine, online appointments and medication delivery. Although most participants expressed their appreciation of the unusual and massive use of online health services, the GPs’ practices towards regular screening are questionable. In my research position as a clinician interviewing a diabetic patient, I asked about the last time that haemoglobin A1c has been tested, the response was startling:

“I had it last year, but the coronavirus pandemic delayed tests appointments. They only care about dispensing the medications.” (P7)

Screening for diabetes complications such as retinopathy, diabetic nephropathy and diabetic foot, which are supposed to be done annually, has been postponed for most of the participants.

The children’s regular vaccination programme also has been affected. Some participants who attended a PHC regularly complained about the delay in completing their children’s vaccines due to difficulties in obtaining a vaccine appointment.

“They told me that the vaccinations were over and I have to wait for a new appointment. This is the reason why my children did not get their vaccinations until now, even though they are to join the school this year. My daughter still has to get one vaccination and my son still has to get two vaccinations.” (P15)

COVID-19 impact on care for patients with non-COVID conditions and the concern around preventive screening is not restricted to Saudi healthcare. A UK survey found that access to health services for people with long-term health conditions was 20% lower during the COVID-19 peak period. Some of the most significant falls in the use of health services are for mental health, heart disease, diabetes and cancer (8). According to the latest records by WHO (April 2021), 41 million people each year die from NCDs, including diabetes and chronic cardiovascular and lung diseases, which is equivalent to 71% of all deaths globally. In addition, each year, more than 15 million people die from NCDs between the ages of 30 and 69 years (9). Primary prevention is a vital component of the response to NCDs (1)(9), and reduces over one-third of all cancer cases (10). Moreover, people living with NCDs are at a higher risk of severe COVID-19-related illness and death (7)(11).

This reveals how preventive care is required at an alarming pace and emphasises the need for the urgent implementation of efficient prevention strategies during COVID-19. GPs’ efforts must be focused on adhering to evidence-based screening guidelines. Health system policymakers also need to recognise that prioritising COVID cases for pandemic control have other health consequences and demand responses to all health needs. This does not minimise the important measures taken to reduce the risk of COVID-19, but it is an opportunity to build a resilient recovery and emerge stronger from the pandemic.

References

  1. Burke CA. Colorectal Neoplasia [Internet]. 2017. Available from: http://www.clevelandclinicmeded.com/medicalpubs/diseasemanagement/gastroenterology/colorectal-neoplasia/#bib1
  2. Cunningham D, Atkin W, Lenz H-J, Lynch HT, Minsky B, Nordlinger B, et al. Colorectal cancer. 2010;375:18.
  3. He J, Efron JE. Screening for Colorectal Cancer. Advances in Surgery. 2011 Sep;45(1):31–44.
  4. Sebai ZA, Milaat WA, Al-Zulaibani AA. Health care services in saudi arabia: past, present and future. Journal of family & community medicine, 8(3), 19–23. 2001;
  5. Saudi Arabia’s response to the COVID-19 pandemic places it at the highest ranks on international indexes [Internet]. ARABNEWS. 2021. Available from: https://www.arabnews.com/node/1880171/saudi-arabia
  6. GRACE L. Nikkei COVID-19 Recovery Index. 2021.
  7. Brunier A. COVID-19 significantly impacts health services for noncommunicable diseases [Internet]. Available from: https://www.who.int/news/item/01-06-2020-covid-19-significantly-impacts-health-services-for-noncommunicable-diseases
  8. Charlesworth. Shock to the system: COVID-19’s long-term impact on the NHS [Internet]. 2020. Available from: https://www.health.org.uk/news-and-comment/blogs/shock-to-the-system-covid-19s-long-term-impact-on-the-nhs
  9. WHO. Noncommunicable diseases [Internet]. 2021. Available from: https://www.who.int/news-room/fact-sheets/detail/noncommunicable-diseases
  10. Vineis P, Wild CP. Global cancer patterns: causes and prevention. The Lancet. 2014 Feb;383(9916):549–57.
  11. Bashir S, Moneeba S, Alghamdi A, Alghamdi F, Niaz A, Anan H, et al. Comorbidities in Patients with COVID-19 and Their Impact on the Severity of the Disease. Journal of Health and Allied Sciences NU. 2021 Jan;11(01):01–7.

Embedding palliative care into homeless hostels in the UK

Megan Armstrong6 July 2021

 “I’ve seen so many people die…so much of it over the last 19 years…And it’s [the project] invaluable. It should have been done years ago” – Hostel Staff member

In this month’s post, Dr Caroline Shulman and Dr Megan Armstrong discuss their work on embedding palliative specialists into homeless hostels across the UK.

Dr Megan Armstrong is a Senior Research Fellow now managing the PD-Care study and is PI of ‘optimising self-management of long-term multi-morbidity in people experiencing socioeconomic deprivation’.

Image of Caroline Shulman

Dr Caroline Shulman is a GP in Homeless and Inclusion Health and a Honorary Senior Lecturer at UCL. Caroline is continuing to roll this project out, including providing training for hospices on homelessness issues.

 

 

 

 

 

 

 

 

 

 

People experiencing homelessness have a high rate of multi-morbidity, frailty and age-related conditions at a young age and are at high risk of dying young [1,2]. Previous work found people living in homeless hostels often had severe physical and mental health problems, often complicated by substance misuse, and despite the complexity of need they almost never have access to palliative care support [3]. This lack of palliative care support is due to variety of reasons including hospices being unable to support those with addictions and mental health issues, uncertainty about when someone might be palliative, and hostel staff feeling uncomfortable about discussing palliative care [3]. For many people experiencing homelessness, the hostel can be their preferred place of care as they often consider this to be the closest place they have to a home [4]. The lack of palliative care support and appropriate places of care leads to hostel staff supporting very unwell people with complex needs.

Our project aimed to improve access to high quality care and support for people experiencing homelessness who have advanced ill health and to reduce the burden on frontline staff, by embedding training, support, and a multidisciplinary team approach into hostels [5]. Palliative care nurses and social workers attended an intensive two-day training course into homeless issues. Free online training resources were shared (www.homelesspalliativecare.com); this includes tools that can support hostel staff to work with people with palliative care needs. Following training, we held a stakeholder event for homelessness, health, social care and addictions commissioners and providers. This resulted in useful connections being made between different organisations. Following this event, the palliative care staff spent 1-2 days per month in the hostels.

Palliative care staff trained and supported hostel staff to identify red flags, consider which residents they were concerned about who may benefit from a multidisciplinary approach and supported them to involve other members of the multidisciplinary team in the care of their residents. Hostel staff felt much more confident and empowered to approach other agencies as a result of the project.

“I think everyone is just a little bit braver now, to step forward and [to outside agencies] be like, actually, this is how it is supposed to be. You’re not supposed to be telling us that.” – Hostel staff member

The palliative care teams also helped staff focus on a holistic person-centred approach, exploring what ‘living well’ means to someone. As a result of the support provided, hostel staff were happy to support someone who had a new advanced cancer diagnosis, to have a planned death within the hostel. This was the resident’s choice and prior to the project, this would not have been considered.

“Initially when we think that someone is going to die, we would have said “no,no,no, we  need to move them on quickly, we don’t want them dying within the hostel” ..but then we started to change our way of thinking because of this…we did start saying, well yes this is his home” – Hostel staff member

There is a need to refocus how we support people experiencing homelessness with advanced ill health or complex health needs. Not everyone will recover so to work in a more person-centred way we need to explore what insights people have around their illness and explore what living well means to them. If recovery is not an option, the least we can do is support someone to have a dignified and respectful death.

References

  1. Rogans-Watson R, Shulman C, Lewer D, Armstrong M, & Hudson B. (2020). Premature frailty, geriatric conditions and multimorbidity among people experiencing homelessness: a cross-sectional observational study in a London hostel. Housing, Care and Support Vol 23 NO. 3/4 2020, pp. 77-91
  2. Aldridge RW, Story A, Hwang SW, et al. Morbidity and mortality in homeless individuals, prisoners, sex workers, and individuals with substance use disorders in high-income countries: a systematic review and meta-analysis. Lancet 2018;391:241–50.
  3. Shulman, C., Hudson, B. F., Low, J., Hewett, N., Daley, J., Kennedy, P., Brophy, N. & Stone, P. (2018). End-of-life care for homeless people: a qualitative analysis exploring the challenges to access and provision of palliative care. Palliative medicine32(1), 36-45.
  4. Hudson, B. F., Flemming, K., Shulman, C., & Candy, B. (2016). Challenges to access and provision of palliative care for people who are homeless: a systematic review of qualitative research. BMC palliative care15(1), 1-18.
  5. Armstrong, M., Shulman, C., Hudson, B., Brophy, N., Daley, J., Hewett, N., & Stone, P. (2021). The benefits and challenges of embedding specialist palliative care teams within homeless hostels to enhance support and learning: Perspectives from palliative care teams and hostel staff. Palliative Medicine, 02692163211006318.

Eating and drinking difficulties in dementia: what should we be aware of when discussing the difficulties with people with mild dementia?

Megan Armstrong17 June 2021

To mark the National Nutrition & Hydration Week 2021, Kanthee Anantapong (Psychiatrist and UCL PhD student) will share recent work from his team, which involved people with mild dementia discussing their perceptions about eating and drinking difficulties.

At some point in dementia progression, 8 in 10 people living with dementia can experience some types of eating and drinking problems. This includes food appetite and preference changes, inability to recognise food and utensils, behavioural difficulties and disruptive eating routine, and swallowing difficulties. The difficulties usually become more severe at the later stage, and this is challenging and demanding for families and healthcare professionals to make decisions and provide support for persons with dementia [1]. Knowing what people living with dementia would want for themselves will help the families and professionals in managing the eating and drinking difficulties at the later stage.

In our recent project, we talked to people with mild dementia and asked them about their understanding and needs on eating and drinking problems resulting from dementia [2]. We found that many people with mild dementia experienced some mild changes in their appetite, food preferences and social meals. Few people had mild swallowing difficulties. Most attributed these changes to their own choices, other life circumstances such as retirement and moving house or other physical diseases such as dental problems, diabetes and Parkinson’s disease.

People with mild dementia recognised that at the later stage they would be less capable of taking care of themselves, including eating and drinking problems. They generally accepted some assistances if other people would try encouraging them to eat and drink, offering them favourite dishes and drinks, and adapting utensils and home environment. They did not want their families to sacrifice themselves too much for this because it would require lots of their effort and personal time. People with mild dementia did not like other people treating them like a child to give them food and drink, for example, coaxing or pretending the spoon is an aeroplane. The use of artificial nutrition and hydration (feeding tubes and drips) was also not their ideal choice to support eating and drinking problems, especially the feeding tubes. While intravenous drips were acceptable for treating acute illnesses, they felt tube feeding was unnatural and would not bring them pleasure of eating and drinking and quality of life. So, they preferred families and professionals to avoid using tube feeding for them.

There are growing recommendations to include people with dementia in making decisions and planning for their own care [3]. However, from our work we found that most people with mild dementia want to delay discussion about eating and drinking difficulties because they thought this might not be related to dementia, or they probably could adapt their lifestyle to prevent the progression. The fears of being burdensome and being treated like a child could also be the reasons for their wish to delay. The delayed discussion and planning can lead to the later eating and drinking difficulties being managed against the person with dementia’s preferences, dignity and autonomy, for example, the overuse of tube feeding [1]. In fact, people with mild dementia in this study strongly wanted to maintain their sense of autonomy and have a good quality of life throughout their dementia progression, especially at the end of life.

To ensure that at the later stage the person with dementia will receive eating and drinking support aligned to their wishes, we encourage families and healthcare professionals to gradually but continuously engage the person with dementia in the discussion and bear cautions in mind about the person’s understandings and fears about eating and drinking problems and assistances. For people who have missed the chance to the discuss this, we recommend families and professionals look for and respect clues from the person with dementia when providing eating and drinking care. For example, to offer their favourite food and drink if they requested, or to stop and try later if they refused at the time. The aims of eating and drinking at this stage should be to respect their dignity and maintain wellbeing, but not to keep complete nutrition, which are in line with the voices of people with mild dementia participating in our project.

References

  1. Anantapong K, Davies N, Chan J, McInnerney D, Sampson EL. Mapping and understanding the decision-making process for providing nutrition and hydration to people living with dementia: a systematic review. BMC Geriatr. 2020;20(1):520. doi: 10.1186/s12877-020-01931-y.
  2. Anantapong K, Barrado-Martín Y, Nair P, Rait G, Smith CH, Moore KJ, et al. How do people living with dementia perceive eating and drinking difficulties? A qualitative study. Age and Ageing. 2021. doi: 10.1093/ageing/afab108.
  3. Alzheimer’s Society. From diagnosis to end of life: The lived experiences of dementia care and support. London: Alzheimer’s Society, 2020.

 

Thinking about how we support family carers of people with dementia in light of carers week

Megan Armstrong9 June 2021

In this post Nathan Davies talks about some of the recent work he has led on support family carers of people living with dementia, and talks about some of the Covid-19 work which has been implemented in the NHS.

This week marks Carers Week, you may have all seen in the media the wealth of stories and people talking about the challenges that informal carers (friends or family) have experienced over this past year during the pandemic. Carers UK have reported this week that 72% of carers have not had any breaks from their caring role since the start of the pandemic (1).

We know one of the most demanding caring roles is caring for someone living with dementia, with over 750,000 carers currently in the UK. Most of my work looks at how we can support family carers, in particular in the later stages of dementia or planning for the end of life. This is a particularly difficult time for carers and one of the key challenges they face is making decisions about the individual’s care. Decisions may include moving into a care home, increasing the amount of support, managing eating and drinking difficulties, and ensuring the everyday well-being of the individual.

In a recent project we explored the decision-making process carers go through and how they make decisions(2). We developed a model of decision making which considers the context and the processes involved. Making this process and the context explicit may be helpful for carers as a guide to help their thinking when making complex decisions, but also for professionals when trying to start significant conversations.

It is important to consider the context in which decisions are being made including the individual’s personal preferences about their care, any advance care plans they have made or lasting power of attorney in place, considering if the person still has capacity and what their current health status is, and finally, thinking about what support is available from others.

As you can see in the image there were 7 stages in making a decision:

  1. Identifying who is the decision maker or the team and clarifying what is their role
  2. Sharing information about the decision which needs to be made, this may include what the problem is, what are your options etc
  3. Clarifying what is important to those involved, considering their values and preferences, being mindful of disagreement
  4. Managing and considering the emotions involved in making what can be quite significant decisions
  5. Think about what is the feasibility of the options which are available – this is likely to include finances and the impact on the wider family or support network
  6. Balancing what you would like to do (preferred choice) with what you can actually do
  7. Make the decision and reflect on the outcome of this decision to inform further decisions or refine your decision

Now this may all seem rather theoretical, but we have already used this to create some applied resources which carers and professionals can use to help with discussions and decisions.

We have developed a decision aid to support family carers of people living with dementia who are at risk of or who have Covid-19 and are not able to make their own decisions. The decisions focus on care at home, care in the care home and care in hospital. In particular, we have included:

  • How to manage care at home
  • How to support your relative/friend in a care home
  • What to do if they become unwell
  • Should they go to hospital
  • How to keep in touch if you can’t visit

We provide a variety of information including the signs and symptoms of COVID-19 which may be different for older people, and the legal aspects of making decisions. We bust some myths about what support options are available at home. We also consider the benefits and advantages of different options of care including going into hospital.

This guide has been widely shared and is freely available online. It has been implemented as part of NHS England and NHS Improvement Dementia COVID-19 Pathway.

The latest version of the decision guide is available now from: https://www.ucl.ac.uk/psychiatry/decision-guide

For our work on this we also won Alzheimer’s Society’s Dementia Hero Award for Research.

  1. Carers Week 2021 report. Breaks or breakdown Carers Week 2021 report. London; 2021.
  2. Davies N, De Souza T, Rait G, Meehan J, Sampson EL. Developing an applied model for making decisions towards the end of life about care for someone with dementia. PLoS ONE. 2021.

How to keep active in old age? Sports participation key for men

Nathan Davies27 September 2017

Daniel Aggio PhD Student PCPH (6)In this post, Daniel Aggio, a PhD student at PCPH, discusses some of his PhD work that was recently published in BMJ Open and has had widespread media coverage in the UK and across the pond in America.

There is a considerable body of research suggesting that physical activity tracks from childhood into adulthood. In other words, being an active child means you are more likely to be active as an adult. Something that has been less explored is how physical activity tracks during the transition to old age, an important period when many major life events are likely to occur.

This study utilises data from the British Regional Heart Study, a prospective cohort study involving over 7000 middle-aged men recruited between 1978 and 1980 from 24 towns across Britain. One of the main assets of the British Regional Heart study is the lengthy follow up data, including measures of physical activity throughout the transition to old age. By exploiting these data, we were able to explore how physical activity tracks during this period and identify the types of activity in midlife that are most likely to predict an active lifestyle in later life.

It did not come as much of a surprise to find that being active in midlife more than doubled the odds of being active in old age, but we were struck by how strongly midlife sport participation, and particularly if it was initiated earlier in life, predicted being active in old age. For example, men who had played sports for 25 years or more were nearly 5 times as likely to be physically active in later life compared with men who did not play sports. But even taking up sport relatively late in midlife (i.e. less than 4 years ago) significantly increased the odds of being active in old age. Higher levels of walking and recreational activity in midlife also increased the odds of being active in later life, but they were not as strongly associated as sport participation. Until we carry out more research we can only speculate as to why this is the case. Plausibly, people who keep up sport may simply do so because they enjoy it. We also suspect that sport plays a pivotal role in the development and maintenance of key motor skills, which may prove vital in later life.

Although sport participation may be more stable and more likely to predict activity in later life than other types of activity, walking was the most likely to increase during later life, possibly because retirement might free up more time and functional declines may limit capability for more intense activities. From a public health perspective, promoting walking may be more feasible in later life as we show that many older adults are already increasing their walking during the transition to old age.

Being active in midlife, particularly playing sport, is important for maintaining an active lifestyle into old age. Sport participation may be crucial for establishing lifelong physical activity and should be promoted throughout the lifecourse, especially in early life. Strategies to increase physical activity in later life may also need to target other forms of activity that can be widely adopted, such as walking.

Click here to read the full published article.

Making the Most of “Real World” Data

Nathan Davies12 May 2017

In this post Manuj Sharma talks about the mid-year meeting for the International Society of Pharmacoepidemioogy (ISPE) he recently attended at the Royal College of Physicians in London.

Pharmacoepidemiology itself comes across as quite a mouthful, but it simply refers to the study of the use and effects of medications in large numbers of people – focusing on both how effective and safe medications are. As such, research including both trials and observational studies focused on medication all come under the pharmacepidemiological heading.

A big point for discussion at this years conference was the impact of ever growing volumes of “real world” patient data and what it means for the field of pharmacoepidemiology going forward. “Real world” is any data collected outside of the constraints of conventional randomised trials. When it comes to medications, there are many who traditionally have looked at randomised controlled trials as the only means of getting to a clear unbiased answer but given so much data is now becoming accessible, can we really afford to ignore other study designs and methods?

“Real World” Data Sources. Reproduced with permission from presentation delivered by Dr Enrica Alteri from European Medicines Agency at the ISPE Mid-Year Meeting in London, 2017

“Real World” Data Sources. Reproduced with permission from presentation delivered by Dr Enrica Alteri from European Medicines Agency at the ISPE Mid-Year Meeting in London, 2017

The thoughts on what all this new patient data meant for the future of research into medication were sought from representatives from 3 key stakeholders, regulators, industry, and the NHS. The discussion was extensive but here are some of the major points that grasped my attention and gave, I felt, most food for thought…

The regulators were up first and their perspective was delivered by Dr Enrica Alteri, Head of Research and Development at the European Medicines Agency (EMA). She was quick to emphasise how the EMA have been advocating increasing use of “real world” data for some time.

The most interesting example provided of this was regarding an extension of licensing granted to a medication called Soliris® (eculizumab), used for paroxysomal nocturnal haemoglobinuria, a life threatening condition where red blood cells break apart prematurely. The original trials approved the medicine for use in particular patient group with history of blood transfusions while a registry based study using “real world data” was subsequently used to successfully extend the license of the medication for use in patients with other levels of disease severity. The path that any new treatment takes from development to decisions on approval and reimbursement can take over 20 years. So with new medicines being developed at a faster pace, there is a need to make this process more efficient to allow patients to safely access treatments sooner. The EMA is accepting of this type of licensing extension using “real world” data, provided of course, like with any trial, the study is conducted in a rigorous, robust manner!

The industry perspective came from Andrew Roddan, Vice President & Global Head of Epidemiology at GlaxoSmithKline who highlighted another important role for this data in drug development through identifying disease patterns and targets. He also emphasised that use of “real world” data and undertaking randomised trials did not have to be mutually exclusive. Andrew Roddan used The Salford Lung Study as an exciting example where professionals from eight organisations across Greater Manchester involving over 2,800 patients, 80 GP practices and 130 pharmacies collaborated to investigate effectiveness of a new inhaler, Relvar Ellipta® for COPD. The study was securely hosted within the NHS network, which integrated the electronic medical records of consenting patients across all of their everyday interactions with their GPs, pharmacists and hospitals. This linked database system allowed monitoring of patients’ safety in close to real-time with minimal intrusion into their daily lives. This also meant recruitment of a large group of patients was possible – including types often excluded in traditional respiratory trials. Not everywhere has the technological integration that is in place in Salford, but this was an exciting vision for where medicines development can go!

The final perspective, fittingly came from Dr Indra Joshi who gave her viewpoint from the NHS frontline, as a practising acute medicine physician. Dr Indra Joshi was excited by the increasing volumes of patient data emerging and believed it could greatly contribute to various aspects of pharmacoepidemiology while also improving patient care. She was, however, keen to remind everyone that patients must be involved each step of the way to ensure this data continues to become available. She also believes that despite advances there was still some way to go before we achieve the healthcare record integration needed to conduct studies to the quality of the Salford Lung Study throughout the UK.

The lively discussion and presentations from the stakeholders gave interesting perspectives on the future of growing volumes of patient data and what it meant for research into medication. Despite some differences there was overall agreement on a few points. While trials remain central to medication licensing decisions and establishing efficacy of treatments early on, there are multiple opportunities for “real world” data to add to this evidence base to support the process. A clear understanding of the strengths and limitations of the available “real world” data was key to realising where they can add most value. And finally, how important it is to ensure early and frequent engagement between all stakeholders for success. Next time, it would be great to hear the patient perspective as well!

 

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Big Bang Data Exhibition at Somerset House

Nathan Davies8 April 2016

In this blog Tra My Pham talks about a recent visit the Thin team had to the Big Bang Data exhibition at Somerset House.

Our team recently went on a field trip to the new Big Bang Data exhibition at London’s Somerset House. Through the work of artists, designers, journalists and visionaries who used data as raw materials, the exhibition showcased the complex relationship between data and our lives, how data affects the way we do things today and impacts our future.

The weight of the cloud

The weight of the cloud

The introductory section of the exhibition revolved around the concept of ‘the cloud’, a buzzword for online storage services such as Dropbox or Google Drive where we can store and access our data over the Internet instead of using a computer’s hard drive. These conceptually light and intangible services are actually supported by a heavy network of physical servers located in industrial-scale warehouses known as data farms. For example, Facebook’s first data centre in Europe is based in Lulea, Sweden, serving more than 800 million Facebook users. The invisible infrastructures supporting ‘the cloud’, hidden inside such closely-guarded data centres, were unveiled to viewers in Timo Arnall’s fascinating film Internet Machine.

History of data was the main theme of the next section that we went on to see. The last few decades have witnessed an information explosion, which involves a radical shift in the quantity, variety and speed of data being produced, as well as the continuous evolution in the way data can be stored, accessed and analysed.  From floppy disks with storage capacity of 1.44 megabytes in the late 80s, we can now easily store and carry around terabytes of data in portable hard drives for everyday use. Going back a couple of decades, storing 1 terabytes of data would require more than 700,000 floppy disks!!!

Horizon by Thomson and Craighead (2015)  - digital collage from online sources

Horizon by Thomson and Craighead (2015)
– digital collage from online sources

This section also gently touched on the discipline of data visualisation, which has become essential in capturing and making sense of the abundant data available nowadays. I was particularly drawn to ‘Horizon’ by Thomson and Craighead, a digital collage of real-time images taken in different time zones around the world and constantly being updated, forming what resembled a global electronic sundial.

Some of the work in the next section we visited focused on the issue of data privacy and security, something we all need to consider in our roles in research. For example, by mapping pictures of cats posted on social media in I Know Where Your Cat Lives, Owen Mundy exposed how easy it is to trace the location of cat owners using their own digital footprints.

Other artists’ interest lies in collecting and visualising their own personal data. My two favourite pieces of work in this stream were Dear Data by Stefanie Posavec and Giorgia Lupi, and Annual Reports by Nicholas Felton.

Dear Data by Posavec and Lupi -  Week 7: A Week of Complaints

Dear Data by Posavec and Lupi –
Week 7: A Week of Complaints

In Dear Data, London-based Posavec and New York-based Lupi got to know each other through postcards filled with data they collected and drew about their weekly activities; from the number of times they looked at the clock to how often they laughed or made complaints.

Since 2005, Felton has been gathering a legacy of information about himself, his personality and everyday habits such as dining, drinking, reading and travelling. These data are presented in the form of annual reports, reflecting his activities during the years.

Annual Report by Nicholas Felton –  Dining and Drinking in 2008

Annual Report by Nicholas Felton –
Dining and Drinking in 2008

To me, these two pieces brought about a sense of wittiness. However, what struck me most was that there is no single correct way of making sense of the data, and data that seem to be trivial at first sight can be integrated and visualised to tell meaningful stories.  As a researcher using a large primary care electronic database, this was by far the most special section of the exhibition to me, and gave me much inspiration for improving the data visualisation aspect of my work.

Function: Pixellating the War Casualities in Iraq  by Kamel Makhoufi (2010)

Function: Pixellating the War Casualities in Iraq
by Kamel Makhoufi (2010)

This section showed how the future form of our data society is being shaped for the common good. What drew my attention was Pixellating the War Caualities in Iraq, a simple yet stunning pixel visualisation created by Kamel Makhloufi to highlight the casualties during the Iraq war. Each pixel had a colour, blue for ‘friendly troops’, green for ‘host nation troops’, orange for ‘Iraqi civilians’ and grey for ‘enemies’. The two images showed the same data but in different presentations. The right image illustrated the deaths as reported chronically, and the left image grouped the deaths by the characteristics of the person killed. This work really emphasised the power of visualisation tools in conveying meaningful messages from large and complex datasets.

We also visited other sections of the exhibition including ‘London Situation Room’, where stories of Londoners were depicted through data, and Black Shoals: Dark Matter’, which was a spectacular visualisation of the world’s stock market.

The exhibition ended with ‘What Data Can’t Tell’. This section featured works to illustrate that using data analysis alone may not be enough to resolve some of our society’s complex issues such as education, health care or war, which also involve a high level of moral arguments.

Before concluding our visit at the exhibition, we made our last stop at The Data Store. This section brought together products that capture data with the aim of enhancing our everyday life, such as personal fitness wristbands, or wearable camera that automatically take pictures over the course of a day, also known as narrative clips.