This post is written by Greta Rait (Clinical Professor of Primary Care and Health Services Research) and Jane Wilcock (Senior Research Fellow) who have played a lead role in an international collaboration aimed at supporting people after a diagnosis of dementia.

By 2050, the World Health Organisation has estimated that 139 million people world-wide will have dementia. There is currently no treatment for the disease and no cure. We know that people living with dementia and those who care for them often have negative experiences of the dementia diagnostic process.

People tell us that they receive insufficient information after a dementia diagnosis, there is a pervasive view that little can be done and that you are given are a diagnosis and told to go to home and get on with it. This has been exacerbated by pandemic restrictions on services and community-based supports.

Most dementia post-diagnostic support does not consider quality of life and is reactive and not proactive, it is also very patchy in terms of provision at an international and national level. Health care professionals can find communication of a dementia diagnosis difficult. They can find it tricky to get supports and care packages in place. They report variations in service availability and a lack of integration of services.

What was our approach?

We are part of an international consortium led by the University of New South Wales with colleagues in Canada, The Netherlands and Poland partnering with people living with dementia, those who care for them and healthcare professionals to improve dementia support.

The UK team (Greta Rait, Jane Wilcock at UCL and Louise Robinson and Marie Poole at Newcastle University) undertook a review and thematic analysis of global National dementia strategies and guidelines and public health campaigns.  It became clear from this review and workshop discussions with our partners that there were multiple areas requiring attention but for this ambitious study we wanted to focus on doing one thing and one thing well. From this it became clear that we would focus on the need for support during the first 12 months post diagnosis.

Our work highlighted:

• the uncertainty following a diagnosis about what the future holds and who can help
• how accessing good support at the right time is key to living positively with dementia
• concerns among healthcare professionals that they don’t always know enough about dementia, or the organisations and services that can offer practical or emotional support
• ongoing issues during the Covid-19 pandemic with finding and providing good dementia support

Through an iterative and collaborative process of co-design workshops and user testing refinement we have developed Forward with Dementia  a website and personalised toolkit to help people with dementia, their families, and professionals providing support, to access the right information and support at the right time. For free and on any device. Each partner country has translated and culturally adapted the intervention to their own regions. The site is available in Polish, Dutch and French Canadian.

How Forward with Dementia can help?

The online guide brings together practical advice, personal experiences from people with dementia and those who care for them, and topical news stories.  You can find information on key issues: Hearing (and giving) a diagnosis; Coming to terms with dementia; Managing symptoms and changes; Supporting health and wellbeing; and Making plans and decisions.  The site is designed to simplify navigation, ensure accessibility, and written in a friendly non-scientific language either for a person with dementia, family carer or healthcare professional.

A personalised toolkit lets people choose and save information that is relevant to them and create actions to take positive steps to living life with dementia,  without having to remember a password and log-in name.  The toolkit can be shared with others such as family, friends, professionals though sharing a unique URL.

Bill has been part of the UK co-design group.  He cares for his wife Jo and is a passionate advocate of improving understanding of dementia and living positively. As well as being involved in the development of the guide, Bill continues to use it for support as their circumstances change:

“My wife Jo was given her diagnosis during lockdown and I, like many others had no experience of what to do next. Who do I turn to? What help is available? Where can I find out everything I need to know? The realisation that I didn’t know what I didn’t know was overwhelming. now. If only Forward with Dementia had been around then my life would have been so much easier. As the research and website developed so, sadly, did Jo’s journey. I was able to contribute from real time life experience and also gain insights from others into both my journey and Jo’s, all at the right time for me. I have and will continue to use this resource as a valuable part of my dementia toolkit.”

 Join us to find out more

We are trying to reach out to as many people as possible who would benefit from accessing Forward with Dementia.

• You can explore the site and create a toolkit
• Share the guide with family and friends
• Consider using this with patients or clients to start difficult conversations
• Help us with our evaluation and to improve the site by completing the short website survey via the homepage or reach out and speak to us. We would love to hear your feedback.
• You can request our leaflets and posters to help raise awareness

Follow us on social media for regular updates and information about promotional events.

Facebook: @ForwardDementiaGB

Twitter: @ForwardDementia

Instagram: forwardwithdementia_gb

YouTube: Forward with dementia International

What next? We have been awarded a research grant from the NIHR Three Schools’ Dementia Research Programme to produce and deliver a tailored supportive guide to social care after a diagnosis of dementia.

Jane will lead on this research across the NIHR Schools of Primary Care, Public Health and Social Care Research partnering with colleagues at Newcastle University and King’s College NIHR Policy Research Unit in Health and Social Care Workforce.

For further information about Forward with Dementia, or to request resources such as leaflets or posters contact Jane Wilcock at j.wilcock@ucl.ac.uk

Forward with Dementia in the UK are funded by the Alzheimer’s Society.

 

This blog is written by Tasmin Rookes, Research Assistant for the PD-Care programme. Tasmin also runs a Research Assistant group – if you’d like more information about this group please email Tasmin here: t.rookes@ucl.ac.uk

Since the COVID-19 pandemic research activity, such as identifying, consenting, and assessing participants has been conducted online and remotely. With many clinical populations being older adults, without consistent levels of technology knowledge, this has introduced some challenges. Reflecting on the PD-Care feasibility study, I share our experience and learnings of conducting remote research with people with Parkinson’s.

Identifying potential participants

On the morning of clinics, send reminder emails to the clinical teams to remind them to approach potentially eligible participants with a copy of the participant information sheet.

When following up with a phone call to discuss further, have a loose script with the key information points participants need to know, including the next steps involved to get them enrolled.

Where relevant, recruit or include participants carers or family members to assist with explaining the study, setting up technology or assisting with future research activity, particularly if the person has mild cognitive impairment.

Consenting participants

If obtaining consent online, follow-up with phone calls or emails to reminder people to complete the consent form and keep it at the forefront of their mind. Older people often aren’t used to managing an email inbox, so sometimes resending the link to the consent form can help.

If obtaining written consent, via the post, follow-up after one week of posting to determine if it has arrived and if they have any questions. Be prepared for postal delays and always offer to resend out if participants have waited a long time.

If obtaining verbal consent, ensure you have posted or emailed a copy of the consent form, so participants can follow along. Ensure they are engaged by asking them to state their name and date for the recording. Read through each statement clearly, asking participants to confirm they consent to each statement. Be prepared for questions and consider that your answers are being audio recorded. Save audio recording in a secure location and complete a consent form stating verbal consent was obtained, to send a copy to participants, GPs, and upload to patient notes.

Completing assessments

Be aware of potential risk and safeguarding. If a participant discloses something concerning, follow the guidance in the study protocol and ask for advice from senior colleagues. Keep records of all decision making and collect the participants GP and clinical team contact details for future use.

Completing assessments can be lengthy and is more tiring when completed on a screen. Be transparent about how long they will take and offer comfort breaks or break into shorter sessions where appropriate. Also, providing a written copy of the assessments to participants can help them to follow along with the questions as they are being asked. Allow plenty of time for the assessment and give participants time to think and respond.

Consider whether the assessments you want to do can be completed remotely. If not, consider self-report measures or look for measures that have been adapted to be delivered remotely.

It is inevitable that some assessment appointments will be missed by participants. Send reminder letters, emails, or phone calls to prevent this from happening and provide them with your contact details, so they can inform you if they can no longer attend. Try to reschedule as soon as possible, particularly for follow-up assessments where timelines can be tight.

Be prepared for technical issues and understand how to talk someone through joining calls using the chosen software. Get an understanding of how confident they are, so you can support them and factor this into the time allocated.

Key messages

Most people are happy to conduct research remotely and on the whole older populations are comfortable using technology if they are supported.

Have a clear process in place and test with the team or PPI members before starting to recruit, to iron out any potential issues.

Allow plenty of time at every step, being patient, friendly and calm. You may be the only person they speak to that day, or they may be anxious about using the technology or completing the assessments, so this may help put them at ease.

Consider all potential impairments participants may have, including vision, hearing and speech, and have strategies in place to overcome these and be inclusive. These include, offering study documents in large print, providing contact through email or letter, and having a carer or family member present to support.

Be organised, keep logs of what has been done and what is still to do, so recruitment and follow-up schedules are adhered to.

As we develop more digital interventions and conduct research activity remotely, adapting our approach and using the tips outlined above, successful research conducted remotely with older populations is not only feasible, but can be successful and beneficial.

This blog post is written by Sara Thompson (GP), Morounkeji Ogunrinde (GP), Zenni Emeka-Enechi (Medical student) and Natalie Amavih-Mensah (Medical student).

Racism in healthcare concerns everyone

Racism and racial inequality are deeply rooted in societies and institutions worldwide. Britain is no exception.

For many, 2020 was a clarion call to address various ills plaguing our society. Although the time in isolation and lockdown brought significant emotional stress, it also forced us to confront long-standing systemic concerns based on race and our misconceptions of one another. In 2020, the BMJ published its first special report on racism in healthcare since its inauguration in the 1800s.¹ In the UK, racial disparities occur in fields as varied as genetic counselling, artificial intelligence, and medical school admissions.² These inequalities expose ethnic minorities to a higher risk of chronic conditions.³

Racism, not race, perpetuates health disparities

The NHS is regarded as a fair and equitable tool for distributing health care services, and its accomplishments have been praised worldwide. Yet, despite this, one in five black women in the UK die in and around childbirth.⁴ Black men are ten times more likely to face discrimination when presenting with a mental health illness.⁵

Training on microaggressions and implicit bias have minimal effect on outcomes and cannot facilitate change without a corresponding shift in the system.⁶ Attempts to haphazardly reduce these disparities without addressing the root causes have been problematic e.g. the #NotsoNICE campaign.⁷ NICE proposed draft guidelines to reduce maternal mortality among Black, Asian and minority ethnic people by encouraging inducing labour.⁸ The guideline did not address the principal factors of racism and neglect, sparking outcry and disillusionment. Race-based medicine provides crude shortcuts to clinical judgement that is harmful to patients from BAME communities.⁹

World-renowned science journalist Angela Saini refers to race as a social construct that we should challenge. She reports that we “tailor” clinical decisions about patient treatment considering race without any substantial scientific basis of delineating what terms like “Caucasian” or “Black” mean¹⁰; we have created a subjective ‘science’ that is not scientific at all.

The healthcare and minority ethnic groups divide

Patients of colour are disproportionately vulnerable to misdiagnosis and undertreatment. Consequently, patients from ethnic minorities have poorer outcomes in healthcare and fewer opportunities to access healthy living.³

A lack of diverse, inclusive education precipitates insidious doubt and mistrust recently exemplified by the suspicion and hesitation of the ethnic minorities communities towards the COVID-19 vaccine.¹¹

Health Care Professionals (HCPs) and students come to accept racial biases and aggressions as the norm. Some  professionals from ethnic minority groups are reticent to voice concerns for fear of being undermined or receiving backlash. HCPs from ethnic minority groups are more likely to be blamed for errors and are victim to disproportionately more disciplinary action.¹²

Students from ethnic minority groups may not report racial aggressions because they believe their medical school will not take them seriously.¹³ There is a performance gap in UK medical schools. Black students are more likely to underperform compared to their white counterparts.¹⁴

People from ethnic minority communities are less likely to participate in research studies and initiatives to improve health outcomes. Thus, there is less data available, biasing research and policy.¹⁵

Natalie’s experiences as an ethnic minority patient

Feeling unheard and misunderstood is debilitating. I struggled with acne since high school. I was only referred to dermatology after three years. I cannot be sure if my race played a part intentionally, or unintentionally; however, significant distress was caused.

Insecurities, caused by acne, stifled my confidence. I believed that the condition defined me. My GP practice consistently dismissed my concerns making me think that the acne was my fault. I felt powerless and alone. Understanding the variations in presentation among different skin tones is not just about treating a single condition; it is also about preventing and remedying the subsequent destructive psychological thinking patterns.

The Diversifying Dermatology in Primary Care Working Group

We aim to understand the patient experience and to increase the diversity of educational resources available, we want to raise awareness that conditions as common as acne and eczema present differently on different skin tones and educate on how to better diagnose and manage these conditions on darker skin. We won a “Listen and “Learn” grant, with which we held interviews to understand service users’ experience. Mimms Learning has developed an e-learning module addressing several questions on how and when black skin will look significantly different. ¹⁶ Our collaboration with Black & Brown Skin aims to facilitate community members to continue to support each other by creating a forum for shared experiences and a growing image library accessible to clinicians worldwide.

We hope that, by increasing the variety of resources available, the quality of education will improve, leading to higher quality care for patients thus enhancing patients’ trust in the health care service created to treat and serve them.

Conclusion

Reform takes time. We need to overturn and redefine ideas about race that have persisted for centuries. There will be uncomfortable conversations and we will have to overcome indifference and resistance to change.

Decolonising the curriculum is not a fad; it is something that we must continue, even when the world is not watching. With dedication, persistence and unity, there is hope for a better future – for all skin tones.

Additional Information

Quiz on Dermatology in Black and Brown Skin

Bimpe and Zainab: Bimpe (UCL medical student) talking to Zainab about atopic dermatitis.mp4

Zenni and Malone:Zenni (UCL medical student) interviewing Malone Mukwende (Founder of blackandbrownskin.co.uk).MOV

Honey and Natalie:Honey (UCL medical student) talking to Natalie about acne vulgaris.mp4

References

1. https://www.bmj.com/racism-in-medicine
2. Adebowale, V., Rao M. Racism in medicine: why equality matters to everyone. BMJ [online] 2020;368:m530 . Available from: doi: https://doi.org/10.1136/bmj.m530
3. McKenna, H., 2019. Professor David Williams on racism, discrimination and the impact they have on health. [podcast] The King’s Fund. Available from: <https://www.kingsfund.org.uk/audio-video/podcast/david-williams-racism-discrimination-health>
4. https://www.bmj.com/content/372/bmj.n152
5. https://www.mind.org.uk/news-campaigns/legal-news/legal-newsletter-june-2019/discrimination-in-mental-health-services
6. Sharda S, Dhara A. It’s Time To Talk: Gender and Race in Medicine. CMAJ Blogs July 2019
7. Lewin, L. The #NotSoNice Campaign [online]. The OBS: England; 2021 [Accessed 30th August 2021] Available from: https://the-obs.co.uk/your-doula/
8. National Institute for Health and Care Excellence. ​​NICE recommends offering women induced labour earlier in new draft guidance [online]. NICE: London; 2021 [Accessed 20th August 2021]. Available from:https://www.nice.org.uk/news/article/nice-recommends-inducing-women-in-labour-earlier-in-new-draft-guidance
9. Chadha, N., Lim, B., Kane, M., et al. Toward the Abolition of Biological Race in Medicine. UC Berkeley [online] 2020; 4-6, 16-19. Available at: <https://escholarship.org/uc/item/4gt3n0dd>
10. https://www.angelasaini.co.uk/
11. Lockyer, B, Islam, S,  Rahman, A, et al;  the Bradford Institute for Health Research Covid-19 Scientific Advisory Group.  Understanding COVID-19 misinformation and vaccine hesitancy in context: Findings from a qualitative study involving citizens in Bradford, UK. [online]. Health Expect.  2021; 24: 1158– 1167. Available from: https://doi.org/10.1111/hex.13240
12. Majid, A. What lies beneath: getting under the skin of GMC referrals BMJ [online] 2020;368:m338 . Available from: doi: https://doi.org/10.1136/bmj.m338
13. Kmietowicz, Z. Are medical schools turning a blind eye to racism? BMJ [online] 2020;368:m420 . Available from: doi: https://doi.org/10.1136/bmj.m420
14. Jones, A. C. , Nichols, A. C. , McNicholas, C. M. & Stanford, F. C. Admissions Is Not Enough: The Racial Achievement Gap in Medical Education. Acad Med [online]  2021;96 (2):176-181. Available from: doi:10.1097/ACM.0000000000003837.
15. Smart, A., Harrison, E. The under-representation of minority ethnic groups in UK medical research. Ethnicity & Health [online] 2017;22(1): 65-82. Available from: doi: 1080/13557858.2016.1182126
16. https://www.mimslearning.co.uk/learning-paths/skin-of-colour-disorders-of-pigmentation-and-hair-and-scalp-conditions

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.

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.

 

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 3^rd 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 4^th 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 4^th 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.

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.

 “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.

 

 

 

 

 

 

 

 

 

 

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 medicine, 32(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 care, 15(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.

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.

 

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.