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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.

So why is a GP publishing about Covid radiology? 

Nathan Davies31 July 2020

By Melvyn Jones

I have just co authored a BMJ piece on chest radiographs with Covid pneumonia – The role of chest radiography in confirming covid-19 pneumonia  So why is a GP publishing about Covid radiology? 

My wife is a radiologist with a special interest in chest radiology and a love of a good chest x-ray; back in March she was starting to see the x-rays of the first patients with covid pneumonia and she was shocked.  She hadn’t ever seen x-rays like this.  This was something really different.

There were real fears that hospitals would be overwhelmed and we knew clinicians who never normally look at a chest x-ray anymore were being marshalled in to support the covid response. Would they know what to look for on the chest x-ray? Could we do something to help?  So I wrote to the BMJ pitching an idea on the 22nd March. They liked the idea and commissioned us to do a “Practice pointer”, not a traditional systematic review but an article based on evidence and clinical  experience.  I interviewed my wife to capture the key points and while she was on call went searching for good images.  My literature search revealed 20 articles and only 1 related to Chest x-rays, there really wasn’t much out there. We had our submission ready and posted it on the 30th March and by that stage 1200 UK patients had died of Covid.

I needed to understand a bit of radiology to work though the literature. What is ground glass opacification  (“the lung markings are still visible through the Covid changes”) and how it is different to consolidation- key concepts with Covid pneumonia. Covid lockdown meant the possibility of eating breakfast outside and thinking things through in a slightly less pressured environment. Should I admit to looking at the cloud formations during those few weeks of glorious weather? I did, I do.  Cirrus clouds were my ground glass, I could still see the sky through these light feathery clouds, cumulonimbus was my consolidation; thick, opaque and ominous.

There then followed 6 revisions and further major changes requested by the team that ready it for publication.  It went out to 7 different peer reviewers; many of whom made valuable but conflicting requests for changes but the overwhelming message was – this needs to be out there, now.  We also needed input from a physician who was in the thick of it- how were they actually using imaging as part of their assessments of breathless Covid patient? I was working with James Piper – an Acute Medicine doctor at the Royal Free as part of the MB BS teaching programme and he was happy to help.

We turned round each iteration within 48-72 hours but still the requests for changes came. The numbers of UK deaths went relentlessly up. Eventually it was accepted, type set and finally published on the 16th July.  UK deaths had now exceeded 45,000, Google scholar had hundreds of Covid articles and we were coming out of lockdown. It was a pleasure to see it finally published but there was a real sense that it was just too late.  That’s the thing with the BMJ though; the day it was published it was downloaded over a 1000 times, two weeks later it has been viewed over 7000 times.  The really helpful thing though for someone who is not a big user of social media, was seeing who Tweeted about it and where. The BMJ link had been re-tweeted 147 times and to places like South Africa, South America and India- all parts of the world which were now facing their 1st waves of this terrible disease and today the newspaper headline is “Europe faces its 2nd peak”.  It may be of use to a clinician somewhere having to manage yet another patient with this awful disease, so may be we could and did do something?

A design for life –Finsbury health Centre- a forerunner for NHS primary care

Nathan Davies3 December 2018

In this post Melvyn Jones talks about how the iBSc in Primary Health Care students visit a local GP health centre and learn about who it was developed to meet the needs of it’s patients on the eve of World War II. 

The words of a 1940s poster “fight for it now” and its gleaming image of Finsbury Health Centre directly linked fighting during that recent conflict with needs of soldiers and a beleaguered population for a better life after World war 2. The pre NHS Finsbury Health Centre which opened in 1938 on the eve of war, offered a model of community based health care away from the hospitals, to meet the needs of its very deprived population; burdened with poverty, malnutrition, lice, TB and rickets.

Roll forward nearly 80 years and the current batch of iBSc in Primary Health Care students were shown how this building was designed to meet the health needs of that time; with lead lined walls for the TB x-ray screening service, the solarium was there to prevent rickets and the layout was designed to help clinicians provide the best care they could (the corridors are bright and diamond shaped to encourage interaction between staff).  Dr Marie de Souza, one of the GPs working in the practice discussed how in some ways they are still using this building to deal with similar issues (communicable disease like HIV, vitamin D deficiency due to poor diet and lifestyle) and some issues we still can’t seem to address- we were shown the reception rooms in the basement where homeless families were temporarily housed. Yet there are newer challenges like the increasing burden for people with poor mental health. Rooms that once were used to de-louse bedding are now used to provide CBT. There are considerable constraints involved in providing 21st century health care from this grade 1 listed building (Lubetkin’s architectural master piece).  A repair must look like an unsightly repair (so the building can be “read” by the streams of architectural students), a picture can’t be hung without permission from English Heritage, the door locks can’t be updated because the lead walls are indestructible. And yet, today on a sunny November morning, the light flooded in through the expanses of glass; glimpses of that gleaming 1940s image of hope.

The students were encouraged to think how they might shape the health service for the next 80 years and how the buildings we might get to design could reshape the care we could provide.

 

 

 

 

 

Flipping their learning, and your teaching

Nathan Davies21 March 2016

Melvyn Jones UCL v3In this Post Melvyn Jones talks about new methods and ways of teaching/learning – something in here for us all to take away to our next class!

A room full of students staring at you – “ok teacher, teach us”.   We’ve all probably been faced by a passive group of students turning up to be taught and it can be a bit daunting. Mid way through you see the smart phones being glanced at, the odd stifled yawn. How effective is this teaching?

So faced with this should you be doing the “teaching”, or is what you are after for the students to do the learning? What is out there to help you?

I’ve tried out a few of the CALT teaching updates; a lunch hour session where you can get some fresh ideas on making student learning more effective. I went, I sat, but most importantly I took away what I had learnt and had a go.

First up “Flipped learning”- in a world where information is everywhere, is there any point in transferring facts in a lecture anymore?  Flipped learning suggests getting the student to use the face to face session with the teacher to try new things out, to understand concepts and to explore any difficulties they are having with the subject matter.  The price of this “flip” is that the student must cover the factual material before. It is no longer preparatory reading with all the “optionality” that implies; it is the “meat” of what they will learn.  The “lecture” is no longer a lecture but a discussion, an interaction using that material to advance the students’ learning.  Your job as the teacher is no longer to passively transfer that information but to help the students understand and interact with it in a way that consolidates their learning.  So what if the student hasn’t done the reading?  Well that is their problem; the logic goes that if you buckle and go into lecture mode you disadvantage the students that did do the preparation and you reduce the motivation of all the group to prepare for the next session, so hold your nerve.  Make sure your students know that this is what you expect and if you teach the same group, be consistent and try to get your other teaching colleagues to do the same.

Next up Pecha Kucha, strictly this is presenting 20 slides on a subject and moving on every 20 seconds, but I tried a “Pecha Kucha lite”,  each student talks  about a subject using just  1 slide and you set a very strict time limit; I did 5 minute slot per student  but adapt it depending on the group size and the time available.  Make it fun but also supportive; “bong” them out if they overrun, stop them if they try a second slide or bend the ground rules, but do give them constructive feedback, moderate the feedback from the rest of the group, and make sure everyone is involved.  It is a very effective way of getting students engaged, you will very quickly see if they haven’t “got it” or have misunderstood something and most importantly it is the student doing the learning and to a lesser extent you  doing the teaching. So what did my students think when I had a go? Their feedback included the following “engaged with learning especially as the result of feedback”. Job done?

Importantly these types of skills (Independent learning, presentation skills, team working), are the skills that our students need to develop, to go out and to get jobs in a very competitive world.  The UCL connected curriculum @UCLConnectedC is pushing us to develop research based education, so students learn about research but also that the research informs their learning.

I would strongly recommend these sessions.  Whether you do large group teaching, one to one supervision or bedside teaching there will be something for you. You will interact with people from a wide range of disciplines, as varied as Physics to the Built environment, think about your teaching again and probably be back at your desk by 2.30.