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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.

 

Health messaging to encourage key protective behaviours to reduce the spread of Covid-19: What we can learn from existing evidence about getting the message right?

Nathan Davies7 May 2021

In this months post Dr Sadie Lawes-Wickwar, a Health Psychologist and Lecturer in the department teamed up with other health researchers, health psychologists, public health practitioners, and public contributors across the UK during the COVID-19 pandemic to find out what we can learn about getting the message right to support the public to prevent the  spread of Covid-19.

In the event of an outbreak of an infectious disease, the population is required to make often rapid changes to their behaviour to reduce the spread. Public health campaigns can support population-level behaviour change, but it is crucial that the public receives consistent, clear information, so they understand what it is they need to do new (e.g. when using fa

ce coverings). However, public information during a pandemic can be conflicting, change frequently, or use language that the general population may find it hard to understand. We need to think

carefully about the messages that are used to instruct the public to perform behaviours that are key to reducing the spread of a virus.

After the outbreak of Covid-19 in the UK last year, a collaborative group of health psychologists, behavioural scientists, public health practitioners, and members of the public formed the Health Psychology Exchange to support the public health response to the pandemic. A group of Health Psychology Exchange members set about reviewing existing evidence to inform recommendations for local and national public health teams in developing health campaigns. Our aim was to identify what characterises effective public health messages for managing risk and preventing infectious disease, and what influences people’s responses to such messages.

Our first review of public health messaging found that, to influence behaviour effectively at the population level, messages need to be acceptable to the populations they are targeting, be delivered by credible and trustworthy sources, and in language target populations can understand, to increase understanding and threat perceptions [1]. Specifically, in the context of encouraging vaccine uptake, evidence tells us that providing information about virus risks, vaccination safety, vaccine clinics, and addressing misunderstandings about vaccines, can support uptake at hospitals (e.g. among hospital staff) or within local communities. We can also support understanding and beliefs about vaccines by framing messages in a particular way, such as emphasising the reduction of risks and the benefits to society from being vaccinated [2].

Our work has highlighted gaps in research and the development of previous public health messages, including the valuable input of the public in the design, delivery, dissemination and evaluation of health messages [2]. One of our key recommendations has been the involvement of local communities in all aspects of the messaging process, which is also in line with recommendations from the World Health Organisation (WHO)[3]. We also need more high-quality research to demonstrate the effects of messaging interventions on the uptake of recommended behaviours. Surprisingly few studies to date have evaluated messages adequately to be able to conclude the definitive impact of campaigns on population-level behaviour, such as vaccine uptake.

Our recommendations have informed two British Psychological Society (BPS) Behavioural Science Disease Prevention Taskforce guidance documents to date, one to support public health teams to deliver effective public health campaigns, and another to optimise vaccination uptake during Covid-19. Using behavioural science can boost public health campaigns during the Covid-19 pandemic, and I hope to see more collaborations between health psychologists and public health teams in the coming months as we look to a brighter future.

  1. Ghio, D., et al., What Influences People’s Responses To Public Health Messages For Managing Risks And Preventing Disease During Public Health Crises? A Rapid Review Of The Evidence And Recommendations. PsyArXiv Preprints, 2020.
  2. Lawes-Wickwar, S., et al., A rapid systematic review of public responses to health messages encouraging vaccination against infectious diseases in a pandemic or epidemic. Vaccines, 2021. 9(2): p. 72.
  3. WHO, Communicating risk in public health emergencies: a WHO guideline for emergency risk communication (ERC) policy and practice. 2017: World Health Organization.

 

Destabilising primary healthcare: Digitalised remote consulting and post- COVID-19 patient care

Nathan Davies28 September 2020

Sophie Park1, Yathavan Premadasan1, and Chris Salisbury2

Sophie Park MBChB M.Med. Sci (dist) FRCGP SFHEA, EdD. Professor of Primary Care and Medical Education. sophie.park@ucl.ac.uk

Yathavan Premadasan, BSc. Medical Student, University College London. zchaypr@ucl.ac.uk

Chris Salisbury, MBChB, MSc, MD, FRCGP. Professor of Primary Health Care, University of Bristol. c.salisbury@bristol.ac.uk

1 Research Department of Primary Care and Population Health, UCL, Royal Free Campus, Rowland Hill St. Hampstead, London NW3 2PY

2 Centre for Academic Primary Care, Bristol Medical School, University of Bristol. Canynge Hall, 39 Whatley Road, Bristol BS8 2PS

The COVID-19 pandemic has changed Primary Care dramatically(1), with most consultations conducted remotely by telephone, video or online messaging. But is this a short-term adjustment or the future norm? In General Practice, clinical care has been based on long term face-to-face contact, establishing trusting relationships through continuity of care, and using knowledge of patients’ personal circumstances and social context to provide holistic support. Now, these fundamental principles are challenged.

Matt Hancock (UK Health Secretary) has welcomed rapid changes towards digitalised clinical practice as an overdue development, stating that wherever possible, all future consultations should be conducted remotely(2). But is the pandemic ‘crisis’ simply being used to introduce unscrutinised change? The WHO recently considered the opportunities and challenges of digitalising healthcare systems(3) to address global healthcare workforce shortages and support delivery of universal healthcare, interprofessional working and patient engagement. The report also highlighted potential challenges to equality and social justice posed by private companies keen to exploit the healthcare “market”.

Accessing healthcare through digital services initially seems cheap and even democratizing – what could be easier than emailing your GP? But the reality can be very different. It potentially undermines core primary care principles: the importance of patient interaction; treatment of the whole patient; and situated use of evidence to individualise care, for example negotiating competing priorities in the context of multimorbidity. Worse, it widens health inequality: the healthy, the wealthy and those requiring simple transactional interactions benefit; whilst those with complex health problems struggle to get the care they need.

Remote digital consultations work well for simple transactions(4), for example, where a straightforward problem leads to a clear-cut disease diagnosis and treatment. But the main users of Primary Care are young children, the elderly, and those with multiple problems associated with long-term health and social conditions. Telephone and video provide less rich information than face-to-face consultations, making management of these complex situations difficult(4). The move towards remote consultations is a shift towards less personal and more transactional healthcare and away from an individualised, whole-person approach built on a patient-doctor relationship. Using an online form or telephone consultation means problems risk becoming over-simplified, over-investigated, medicalised and stripped of context and nuance. There is less opportunity for in-depth exploration of patients’ concerns and health beliefs, or for shared decision-making.

Studies in different countries have consistently shown that patients choosing remote consultations are predominantly young adults who are healthier, more educated and more affluent than average(5,6). These are the opposite of the characteristics associated with health need. Older, less educated patients and those with chronic illness are motivated to access digital healthcare, but face more difficulties in doing so because of lack of access to technology, the confidence and skills to use it, or physical or cognitive limitations(7). This should be no surprise to those looking at the “digital divide” in other sectors. For example, over 1 million Lloyds Bank customers (16%) required help to access internet and digital services; moving universal credit on-line increased claimants’ use of Citizens Advice; and, it is the over-75s who comprise most internet non-users(8).

Digitalised access to healthcare does not therefore equate to equitable access, nor does it necessarily reduce professional workload(9). Digital access can increase demand, as a ‘quick and convenient’ patient option(6) and can increase the need for follow-up(10).

These changes impact how primary care is perceived. For patients, those with simple health needs may appreciate the convenience of remote consulting but those with important personal issues to discuss may resent barriers to seeing a doctor in person. For GPs, it can undermine their sense of purpose and identity(10): many doctors choose to work in primary care because they want to offer high-quality, holistic care to a patient they know. If a large proportion of their day is spent emailing or telephoning unfamiliar patients, it degrades both the quality of care and satisfaction in their work. Doubtless it will influence career choices of future doctors.

Short-term, we need to make patient care during the pandemic safe. This requires dynamic and personalised risk-assessments with patients to ensure that face-to-face contact is only used when clinically needed, and in the patients’ overall best interests. While more remote consultations are needed, teams can maximise collaborative learning about how best to conduct and utilise digital patient interactions. However, we should resist normalising remote-first healthcare in the longer-term. Remote consultations offer advantages in specific situations. ‘Digital First’ interactions remain, however, problematic for many patient groups and long-term strategies need to retain agile, flexible and human-centred services, enabling patient choice about access and quality of care.

 

References

  1. Webster P. Virtual health care in the era of COVID-19. Lancet. 2020;395(10231):1180-81. doi: 10.1016/S0140-6736(20)30818-7
  2. ‘More Zoom medicine needed’ in NHS says Hancock: BBC; 2020 [Available from: https://www.bbc.co.uk/news/health-53592678 accessed 28/08/2020.
  3. ‘Future of Digital Health Systems: Report on the WHO Symposium on the Future of Digital Health Systems in the European Region’. Copenhagen, Denmark 6-8th February 2019. World Health Organisation (Regional Office for Europe).
  4. Hammersley V, Donaghy E, Parker R, et al. Comparing the content and quality of video, telephone, and face-to-face consultations: a non-randomised, quasiexperimental, exploratory study in UK primary care. Br J Gen Pract 2019;69(686):e595-e604. doi: 10.3399/bjgp19X704573
  5. Rodgers M, Raine G, Thomas S, et al. Informing NHS policy in ‘digital-first primary care’: a rapid evidence synthesis. Health Services and Delivery Research 2019;7(41) doi: 10.3310/hsdr07410
  6. Pearl R. Kaiser Permanente Northern California: current experiences with internet mobile, and video technologies. Health Aff (Millwood) 2014;33(2):251-7. doi:10.1377/hlthaff.2013.1005
  7. Nijland N, van Gemert-Pijnen JEWC, Boer H, et al. Increasing the use of econsultation in primary care: Results of an online survey among non-users of econsultation. Int J Med Inf 2009;78(10):688-703. doi: 10.1016/j.ijmedinf.2009.06.002
  8. Elahi F. Digital Inclusion: Bridging Divides: Cumberland Lodge; 2020 [Available from: https://www.cumberlandlodge.ac.uk/read-watch-listen/digital-inclusion-bridgingdivides-cumberland-lodge-report accessed 28/08/2020.
  9. Salisbury C, Murphy M, Duncan P. The Impact of Digital-First Consultations on Workload in General Practice: Modeling Study. Journal of medical Internet research 2020;22(6):e18203. doi: 10.2196/18203
  10. Atherton H, Brant H, Ziebland S, et al. The potential of alternatives to face-to-face consultation in general practice, and the impact on different patient groups: a mixed methods case study. Health Services and Delivery Research 2018;6(20) doi: 10.3310/hsdr06200

 

Contributors

All authors contributed to the conception and design of this blog, and YP undertook searches of relevant literature. SP and CS drafted the manuscript and YP commented on and approved it.

 

This blog was originally posted on the NIHR School for Primary Care blog. 

UCL Medical School Leading the UK Culinary Medicine Teaching Movement

Nathan Davies21 September 2020

In this post, Jessica Xie (final-year UCL medical student) shares why UCL medical students have been swapping their scrubs for aprons for an eventful day of learning in a teaching kitchen.

Nutrition education in the first three (pre-clinical) years of the  UCL undergraduate medical (MBBS) curriculum includes nutritional science and public health nutrition. In every medical specialty from Paediatrics to Geriatrics, there is increasing evidence to suggest that nutrition plays a central role in determining morbidity and mortality. Thus, it is increasingly important for students to learn about nutrition in a clinical context. 

The aims of the course are to equip students with the knowledge and skills to recognise patients whose health and wellbeing may be improved through dietary modification, and to be able to provide basic dietary advice.

Set in a teaching kitchen at Westminster Kingsway College, the course provides a unique learning experience. Students engage in a variety of teaching methods, including an online module, face-to-face tutorials, case-based discussions, role play and culinary skills training. Topics that have been taught on the course so far include types of diet and their evidence base, dietary interventions to treat or as an adjunct for disease management and socioeconomic determinants of dietary patterns and access to food. The skills that students gain from Culinary Medicine teaching include food identification and preparation, and communication skills, including motivational interviewing (MI). The latter is the art of empowering an individual to change their behaviour to achieve health and wellbeing improvement. A doctor’s role in MI is to highlight to patients aspects of their lifestyle that could be improved, collaborate with patients to create achievable goals and to support patients to make, and sustain, the behaviour change(s) themselves.

A nutritious meal cooked by UCL medical students during the Culinary Medicine course kitchen session.

Since March 2020, teaching has been delivered online via Blackboard Collaborate and new topics have been introduced to educate students about nutrition challenges exacerbated by COVID-19, for example access to food. One such topic is Nutrition Insecurity which is centred around a case study which highlights the disproportionate effect of COVID-19 on ethnic minorities, people of low socioeconomic status and those with pre-existing co-morbidities. Not only do students have the task of considering nutrition priorities from a patient’s perspective, they must also produce an appropriate management plan that addresses both the patient’s health and social needs. This task increases students’ understanding of socioeconomic determinants of health and emphasises the importance of an interdisciplinary approach to health and wellbeing. 

In June 2020, the UCL Primary Care team and CMUK organised a live cook-along webinar, led by CMUK founder (Dr Rupy Aujla) and Culinary Lead for CMUK (Chef Vince Kelly). Recipes were created using ingredients that are typically found in food bank parcels and were emailed to students in advance to encourage participation. The two hosts had a cook-off with Chef Vince producing an impressive four-course meal that won the majority of students’ votes, securing his victory! 

In future teaching sessions, students can look forward to webinars on culinary skills training, motivational interviewing role play and Q&A sessions with patients about their experiences of nutrition in healthcare. The topic Food Sustainability will also feature to teach students how to eat well whilst reducing their carbon footprint. 

Elements of nutrition education will be woven into other aspects of the MBBS curriculum. For example, students will be encouraged to incorporate nutrition advice into their General Practice reflective essays about a patient with chronic disease.

The UCL Culinary Medicine course was recently featured on BBC London news for being an innovative method of teaching medical students and doctors about clinical nutrition, and is endorsed by chefs and celebrities

With thanks to Dr Sara Thompson for her input in writing this blog post.

Covid 19: Adapting to new realities and ensuring well-being

Nathan Davies21 September 2020

By Dr Patricia Schartau

The Covid 19 pandemic is likely one of the most consequential global challenges of this generation. Individually, it impacts on all aspects of our lives including our health, finances, relationships, wellbeing and sense of self. Globally, it has far reaching consequences by affecting our healthcare systems, the economy and the way our world functions on an everyday level.

While this is a new type of ‘disaster’, for decades researchers have mapped the phases of emotional response to crisis, such as natural catastrophes and terrorism1: The initial ‘heroic’ phase2 is characterised by high levels of activity and a surge in altruistic behaviours (e.g. volunteering, healthcare workers stepping up).  The ‘honeymoon’ phase which followed through April3 comprised a sense of collective optimism and virtual community bonding. In May the ‘disillusionment phase’ started, probably the most challenging phase characterised by a heightened sense of discouragement and stress. This phase is associated with negative emotions, such as anxiety and sadness, and physiological upsets such as insomnia, dream disturbances and hyperarousal. Eventually, we will progress into a calmer yet similarly challenging phase, the ‘reconstruction’ phase. Whilst some of the phase headings seem somewhat misleading given the gravity of the situation and it is important to recognise the fluidity of the phases, they provide a good framework in order to describe human emotions and behaviours in response to crisis.

The ‘disillusionment’ phase, our current phase, exposes our vulnerabilities- our respective roles amongst family and friends, in employment and the wider society have been shaken up. The fragility of our health, wellbeing and socio-economic security have been exposed. What seemed relatively untouchable (e.g. freedom of movement, supply chains of medications and food) suddenly collapsed. Whilst the world around us moved and reformed on a daily basis, our own personal tsunamis (in my case primarily the unexpected loss of a close family member and losing some of my patients to Covid 19) create even more instability, with the usual safety nets, such as social activities and work routine, having become disabled.

Over the past months, most of us will have felt at least intermittently overwhelmed and asked ourselves- how can I make sense of this situation let alone get through it?  Personally, I reflected on my PhD in emotion regulation and assimilated the public advice from former psychology colleagues, such as Willem Kuyken from Oxford University. He highlighted4 a few simple mechanisms to help cope with this challenging situation:

Focussing our attention: We naturally focus our attention to threats in order to protect ourselves. Attending to the 24/7 Covid news is cognitively and emotionally exhausting. Whilst most of us are feeling a sense of loss of control, training ourselves to re-focus (e.g. by using mindfulness techniques5) and by choosing carefully what to attend to is a way to regain it. One practical example is to limit the number of times per day we read the news and/or Covid related WhatsApp threads.

Changing how we relate to the crisis: Us humans naturally enjoy to ‘time travel’- switching from past, to present, and to the future with an incredible speed and fluidity. Making future plans keeps us goal-orientated, grounded and emotionally stable. However, during the pandemic, trying to make plans has been an additional source of distress, unsettlement and anxiety. In my experience, digesting the world in smaller bites, with a sense of calmness and patience whilst not reacting to every change around us (including one’s own emotions), helps enormously. The notion that one can change thoughts and emotions in this situation by shifting focus, and choosing personal ways to relate to the crisis, is immensely empowering and somewhat reassuring. Whilst the world out there continues to change ever so quickly, it allows to regain some much needed stability.

Taking care of ourselves and having meaningful relationships with others: This is not rocket science, but wellbeing is supported by a healthy diet, plenty of exercise, a good sleep hygiene, good hydration, keeping some kind of routine and doing things that we enjoy and that give us meaning.  The latter includes social interactions with, for example, friends and family.

As Kuyken highlighted, ‘psychology offers ways for us to meet such crisis with courage, clarity and wisdom’. It also offers us alternative interpretations: For example, to value the opportunity that has arisen from the quarantine to re-evaluate personal goals and priorities:

 

References:

  1. Carson, J., Eyre, H. & Lavretsky, H. (2020). Dear Mental Health Innovators: The Covid-19 honeymoon is over. Letter in: MJH Life Sciences and Psychiatric Times.
  2. DeWolfe, D.J. (2000). Training manual for mental health and human service workers in major disasters. US Department of Health and Human Services. Substance Abuse and Mental Health Services Administration: Center for Mental Health Services.
  3. Washington, E. (2020). Phases of Disaster. https://www.samhsa.gov/dtac/recovering-disasters/phases-disaster
  4. Kuyken, W. (2020). Waking up in the time of Corona: four insights from Psychology.
  5. Kuyken, W. (2020). Keeping a cool head and warm heart in challenging times. https://www.oxfordmindfulness.org/news/keeping-a-cool-head-and-warm-heart-in-challenging-times-by-willem-kuyken/

Supporting carers of someone living with dementia during the coronavirus pandemic

Nathan Davies28 July 2020

In this post Dr Kirsten Moore, Marie Curie Palliative Care Research Department, UCL talks about dementia and supporting those living with demenita during the coronavirus pandemic.

Who is dying with Covid-19?

In April this year Covid-19 (coronavirus) became the most common cause of death in the UK. Office for National Statistics data showed that most deaths caused by the virus in England and Wales were among older people and those with underlying health conditions.

One fifth of people dying with coronavirus had dementia, making it the most common pre-existing condition. Also, the death rate from dementia was significantly higher in April than the previous five-year average.

How is COVID-19 impacting family and carers?

In the UK 700,000 family members and friends support someone living with dementia, providing 44% of the cost of care for people living with dementia1. Being a carer can negatively impact finances, stress and physical and emotional health. In our recent publication   we highlight some of the end of life care challenges that coronavirus has created for families caring for a frail older person or someone with dementia.

A diagnosis of dementia often leads to reduced social interaction for both the person with dementia and their family carer. Social distancing and lockdown measures are increasing this isolation and loneliness. Carers may have additional worries supporting the person with dementia who may not understand the importance of shielding and keeping socially distant from others.

End of life discussions and planning

When a person with dementia lacks capacity to make decisions, families may be faced with difficult decisions about whether to send their relative with dementia to hospital or a care home for care, or whether to provide end of life care at home where they can be present with their relative. Alternatively, they may have these decisions taken out of their hands due to procedures and guidelines adopted to contain the spread and impact of coronavirus.

In advanced dementia communication may be limited for many months. Having discussions in the early stages of dementia gives someone with the condition an opportunity to express their preferences about end of life care.

There are many benefits to discussing our end of life wishes with our family and those who are important to us. They allow us to share how we want to be cared for and who we want involved in decision making if we can no longer make or communicate decisions.

These discussions can also help family feel more confident in making decisions if the person living with dementia lacks capacity. When family members are unsure what a person wanted at the end of life, they may worry they have made the wrong decisions or feel guilty if the person had an uncomfortable death.

However, these conversations are not easy. Discussing end of life is something most of us tend to avoid. It is difficult to face our own mortality. These conversations are also difficult because we don’t know what is likely to happen or what sort of decisions we, or our families, may be faced with. Often discussions tend to focus on resuscitation status, place of death or whether someone should be taken to hospital.

People who have dementia may find it difficult to imagine situations that they have not yet faced, such as difficulties swallowing and talking.

How can we support carers?

Simply keeping family carers involved and informed is an important way healthcare professionals, hospitals and care homes can support family carers. This may involve having conversations about place of care and end of life care.

There are numerous guides about difficult conversations, such as this Marie Curie blog. There is no one-size-fits-all approach, but the most difficult part is often starting the conversation. Healthcare professionals may be worried about raising end of life topics, that they may not have all the answers or that the family may not want to have these discussions. Carers, however, usually prefer an open and honest conversation, including being told that there may be uncertainty or no clear answers.

Being responsive to whether the carer is ready to have a conversation is important. There may be a pressing need for a conversation, but if discussions are raised at an earlier point in the dementia trajectory then it can give the carer more time to prepare themselves for discussing end of life.

What can carers do?

Family and carers may feel that if a conversation about end of life is needed, it will be raised by healthcare professionals. However, this may not always happen. Carers should feel reassured that if they have questions about the care of their friend or relative, that they should feel able to ask healthcare professionals for information and advice.

You may find it helpful to talk decisions out loud or write down a list of pros and cons. These simple strategies can help you clarify what is important or where you need more information or advice. It is important to get information from reliable and trusted sources. Make use of helplines such as the Marie Curie, Dementia UK or Alzheimer’s Society helplines.

Having a family member who understands how dementia progresses has been linked to a more comfortable death for care home residents. Keep in mind the best interests of the person with dementia if they lack capacity to make their own decisions. Think about their values and what would be important to them. It may not be realistic to follow all their wishes, so do not feel guilty if this cannot be achieved.

Developing a decision aid

To help guide families and carers in making some of the complex and challenging decisions raised here, our team at the Marie Curie Palliative Care Research Department at University College London are developing a decision aid.
We will be exploring the questions that people are asking Marie Curie and the Alzheimer’s Society to work out the biggest challenges facing people with dementia and their families during the pandemic.

We will then work with family carers, healthcare professionals and use existing research to develop a decision aid. The decision aid will help carers think about their current circumstances and provide relevant information to help inform their decision making.

Sources

1. Prince, M., Knapp, M., et.al. (2014). Dementia UK Update (2nd edition).

 

This blog was originally posted on the Marie Curie website, taken with permission from Marie Curie and Kirsten Moore. https://www.mariecurie.org.uk/blog/supporting-carers-dementia/277479

Signposting patients to sexual health online – don’t forget the health (or the sex)

Nathan Davies22 May 2020

In this post Julia Bailey discusses the impact of Covid-19 on sexual health services and discusses sexual health online. 

The Covid-19 pandemic has prompted an unprecedented shift to remote health services as a response to social distancing for patient and practitioner safety. Sexual health clinic capacity has been cut as staff have been deployed to other parts of the health service, and patients are now asked to contact health services by phone or video-link, with clinic visits reserved for a small proportion of people who need to be seen (FSRH guidance). People can also access online sexual health services for STI testing (+/- contraception), in areas where this service is provided.

The shift to remote consultations is likely to make it more difficult to offer holistic healthcare and health promotion. For example, patients welcome opportunities to discuss sexual wellbeing beyond physical health (e.g. sexuality, sexual difficulties, sexual pleasure), but picking up on this will be more challenging with less opportunity to notice non-verbal cues and to establish trust (e.g. whilst examining).

Resources via the Internet and mobile phone can offer private, convenient access to information, which may be particularly welcome for topics which can be difficult to discuss (e.g. sex, sexuality, sexual difficulties). Online sexual health services can offer efficient STI testing and treatment, but do not usually offer evidence-based sexual health promotion. Interactive (i.e. tailored) digital interventions are effective for learning and sexual behaviour change, and could be incorporated into online sexual health pathways.

There is no nationally commissioned digital sexual health programme, and digital innovation varies widely across the UK. There are thousands of health apps and websites, but only a tiny minority have been rigorously evaluated and it is difficult to know which to recommend – the NHS apps library curates trustworthy resources.

Digital sexual health resources for patients – some suggestions:

Before (or instead of) appointments:

After a diagnosis/ongoing support:

Tips for writing patient materials

  • Don’t reinvent the wheel! Check what’s already available
  • Involve target users to make sure material meet their needs, priorities and preferences
  • Draw on principles of evidence-based sexual health promotion
  • Address barriers to access, e.g. audio and video formats; material in first languages
  • Address groups whose needs are often overlooked (e.g. women who have sex with women, trans, non-binary, intersex, and disabled people).

Summary

The post-pandemic ‘new normal’ will include digital health. There are some excellent online sexual health information resources available, and there is currently an unprecedented opportunity to offer evidence-based, tailored sexual health promotion to complement online and clinician-delivered sexual health services.

 

(This post was originally posted on the BMJ Sexual and Reproductive Health website who have provided permission to repost)

Dementia research behind the Scenes: Experience of an A-level student in an academic department

Nathan Davies27 September 2019

Vennie working with Nathan Davies learning about our dementia projects

We have a fantastic post below from Vennie an A-level student aspiring to study Medicine at university. She visited the department and shadowed some of our academics in their various projects in July. In this post talks about her experience and what she took away from it. 

Dementia is an increasing problem especially with the growing older population in the UK. The awareness of dementia is rising, especially through the use of media and organised events such as Memory Walks. However, how much do we know about dementia?

Well, in simple words, dementia is the ongoing decline in the brain. This is only an umbrella term for 200+ different sub-types of dementia that exists, some of which you may have heard off. For example the most common two are Alzheimer’s disease and vascular dementia.

During my placement in the Research Department of Primary Care and Population Health at the Royal Free Hospital, I was able to shadow members of the team that are involved at different levels of research projects.

I discovered that there are many stages which make up the process of a research project. Starting with the planning and design of the research project, ethics, and recruitment through to finally analysing and presenting the results produced. Alongside all this and integrated throughout are processes to ensure the results are implemented into clinical practice and policy, to make a difference. I learnt about the different types of studies such as qualitative studies and large clinical trials. Due to the involvement of human participants including often patients from the NHS in the studies the department runs, a major part of the research process is the ethical application and review. The purpose of the review is to establish if the project has more benefit than risk to the person and their family as well as is the project being conducted sensitively. For all of this to happen, it may take 5 to 20 years to see a difference in practice and policy.

In order for, this project to be successful, a range of people are required to take part, which in turns bring a variety of skills into the mix. These individuals may include designers, programmers, clinicians, psychologists, sociologists, statisticians, qualitative researchers, and importantly patients and their family themselves. A few of the most prominent skills are communication, teamwork, determination and resilience. For example, a project with Dr Davies and Prof Rait I observed on producing a support package for people with dementia and their families, communication has a massive role to play. The project uses workshops with people with dementia, their family and professionals to develop the support package. There is a need for clear communication between the ranges of people for this project to progress smoothly. The communication may come in the form of discussion-based in meetings, emails and many other ways. Therefore, teamwork is essential as each person will have a special role in the project. Finally, determination and resilience are required from every member of the team as there will be challenges along the way, which could be out of your control that must be overcome. For example, if the project does not meet the criteria of the ethics committee it may be returned to the researcher, and his or her team must go back and amend the plan.

In conclusion, research of any kind similar to this project requires a range of people to be involved with a variety of skills that are vital for the research to work. This work experience has been a fascinating and exciting opportunity for me to experience what goes on behind the scenes of a research project.

Accessing GP appointments- a disaster waiting to happen or hope on the horizon?

Nathan Davies16 May 2019

In this post Ruth Abrams and Sophie Park reflect on the current pressures facing GPs and NHS today.

In a recent expose called ‘GPs: Why Can’t I Get an Appointment?’, a Panorama documentary, which aired on BBC1 on Wednesday 8th May, emphasised the current limits of and pressures on the NHS system. The programme featured interviews with overworked GPs and allied healthcare professionals, painting a rather bleak picture. Practices are merging and closing at an ever increasing rate. Patient loads increase as patient lists are subsumed. Patient multi-morbidities have increased the need for chronic conditions to be monitored with regular GP appointments. Yet on average patients wait a minimum of two weeks for a routine appointment. Early retirement and a limited flow of trainees into General Practice also contribute to the strain, making practice sustainability difficult to envisage. Inevitably, pressure and frustration are being felt amongst both patient groups and the primary care workforce.

Whilst those researching, working in and experiencing primary care within the UK will already be familiar with these factors, what has become a pressing concern since the 2015 publication of the BMA’s, National survey of GPs: The future of General Practice, is patient safety. At present only the most urgent of cases are seen quickly in General Practice. Yet still an unsafe number of patients are seen by any one GP in a day. This high demand placed upon GPs makes for little time to reflect on cases.

Enter- the release of the new GP contract and the NHS long term plan which intend to employ a multi-disciplinary army of healthcare professionals. Within this new way of working, workloads will be shared amongst staff, with greater efforts being made for both integration and collaboration. A typical GP’s day will begin to look very different. Micro-teams will have time to discuss patient cases, a GP’s time can once again be focused on the professional tasks only they can undertake and overall there begins to be a healthier outlook to teamwork.

Some promote this utopian vision of General Practice working unquestioningly. Pots of money, such as those made available through the Prime Minister’s Fund, have encouraged new ways of working with very limited evidence base. Yet one aspect seemingly unaddressed within the new plans is the disparity across patient access and levels of deprivation within the UK. In a recent report by the Health Foundation, GPs working in higher deprived areas see more patients compared to their counterparts. These are areas where recruitment of this new workforce will inevitably be harder. This raises questions about how best to incentivise recruitment so that patient access to care remains equal for all.

There is also a certain feel that these plans are being done to, rather than with GPs. We need only reflect back a few short years to the junior doctor protests to recall that in order for patient safety to happen, workforce perspectives must be accounted for. In order for the NHS to remain as successful as it has been and for the principles of Astana declaration to be realised, GP engagement rather than negation needs to remain central to all future planning activities.

Unequal access to care and a disruption to professional identities present major issues. But doing nothing is no longer an option. At a time when the NHS is so often synonymous with the words crisis and strain rather than success, a Utopian vision for both staff and patients may be both timely and necessary. Reifying this however, becomes a different matter all together.