By tonydavid, on 9 October 2020
The 10th October 2020 is World Mental Health Day. This marking of the calendar was launched in 1992 by the World Health Organisation and has become well established. The UK Charity, the Mental Health Foundation proposed a regular awareness week (occurring in May – 18th to 24th this year), back in 2001. Time to Talk day was 6th February 2020, following Blue Monday – 20th January – spuriously claimed to be the most depressing day of the year. In fact, there are mental health days or weeks for fathers, mothers, men and women in general, children (3rd– 9th Feb) and many more – helpfully gathered on the website: therapyforyou.co.uk/post/mental-health-calendar.
It would be easy – and wrong – to be cynical about all this. Wrong because awareness should be the first step towards understanding – for those who are ignorant or unduly frightened by mental illness. Greater awareness in the minds of politicians, philanthropists and scientists should lead to more research and better funding for services. Above all, greater awareness should replace prejudice and stigma with realistic appreciation and empathy. However, as with many anti-stigma initiatives, this can have unintended consequences (watch my talk on this for last year’s World Mental Health Day). In the case of awareness days and weeks – it can lead to complacency and apathy. A better response is to try and propel the agenda forward from awareness to deeper understanding and most important of all, action.
One undeniably positive consequence of greater awareness is the empowerment of people with lived experience of mental health problems to not only tell their stories in their own words but also to become an essential part of “the solution”. I put that in inverted commas to indicate clearly that there is certainly no simple or single solution to mental illness or disorder but that research – from basic science to clinical care to public policy – is the driver towards such an ideal.
The UCL Institute of Mental Health (IoMH) is lucky to have on its advisory board a number of highly qualified and motivated individuals who are able to use their experience of being patients (let’s not say ‘users’) and carers within the psychiatric care system. Here Jackie Hardy and Jason Grant share some thoughts prompted by World Mental Health day.
Nothing about us, without us
I have welcomed being involved in the IoMH and some mental health research with UCL looking at COVID19 and its impact on people’s mental health during this exceptional period in history. The research really has tried to involve Lived Experience Researchers in all pieces of the work, which I have so welcomed. It will be good when some of the papers around this come out.
Being involved has meant I have felt part of something and can share my lived experience in helping to shape things.
Right now we live in uncertain times and I feel mental health services are due an overhaul and have been for a long time. Despite statutory services asking people with lived experience of mental distress, and carers, their views, the same medical model still seems to exist. I would like to see the social model of disability embraced, along with a model of peer support, designed and delivered by people with lived experience of mental distress. Unless you have been there you really cannot know what it is like. The right model of peer support has the person leading their discovery journey – I prefer this term, as ‘recovery’ is pressure; so many of us discover a lot about ourselves, but may never truly recover, as it can be very up and down, as life has its events.
Mental health services should be holistic, looking at the whole person and their whole life and be ‘person centred’. We are all unique individuals, so please do not try to put a square peg in a round hole. Such support needs to be joined up with health professionals and our support network (if we have one, if not ask peers if they can help link the person in to a support network).
If peer support can be person centred, why cannot statutory services? If you do not know how, then please, please talk to us – “nothing about us, without us”, is a term regularly used.
One place to start is NSUN https://www.nsun.org.uk/ – they are: “a network of people and groups living in England who have and do experience mental distress and want to change things for the better.” They can help with research, decide on what should be researched by reaching out to their network of people. I would like to see more lived experience researchers, along with us receiving funding, leading in research and on papers. We can work and learn together.
Change is long overdue, so this is my personal plea for a change.
From Patient to Peer-Support Worker
In the summer of 2015, I had a psychotic episode whilst travelling in Brazil and ended up walking around for three days without sleeping. As I had no insight at the time, I thought that it was just a bad experience and thought nothing more of it. I even went travelling again in Europe a month later where I experienced another psychotic episode. This time I was taken to a psychiatric hospital in Prague and my family had to come and get me out of the country.
I still wasn’t entirely sure what was happening and resolved to not go travelling again for a while. Unfortunately for me, I had another psychotic episode and ended on a section 136 (brought into hospital as an emergency) in Eastbourne Hospital. After being admitted onto the ward for a couple of days, I was then transferred to Meadowfield in Worthing. At this point, I finally realised that it was my mental health that was causing me all of the problems that I was facing and I was determined to do something about it.
I made sure that my time in hospital was spent doing as many activities as possible, from mindfulness, art classes, playing basketball and badminton, walking around the grounds, and even making paper birds using origami.
I was discharged after 10 days into the care of the Crisis Team who referred me to the Early Intervention Service.
I had support for a couple of months then was transferred to Glasgow services as I decided to go back to university. When I returned to Sussex, my care continued for just over three years. During that time, I was able to receive support from a care co-ordinator, participated in various research studies, attended groups and meetings within the Trust, and managed to gain insight around my signs, symptoms, what to do in a crisis and how to manage my condition.
Just to clarify, psychosis is a condition which affects the mind. It changes the way you think, feel, and behave. Some may lose sense of reality and fall into their imagination. Psychosis can occur when drug misuse is an issue and as a reaction to extreme stress or trauma. Psychosis can happen to anyone and like any other illness, it can be treated.
In March of 2020, I interviewed for the position of peer support worker within the same Early Intervention Service that I went through and was successful in securing the role. It took a little while to finally get into post, due to the pandemic and remote working, but I have been working part time since August.
For those that don’t know, Early Intervention is a community-based service for people aged up to 65 years old who are experiencing their first episode of psychosis. The idea is to help people have a positive first experience of mental health services, to reduce symptoms and support recovery, to support the family/carers and involve them as much as possible, and to use evidence-based treatments for psychosis.
The team consists of doctors, nurses, social workers, occupational therapists, psychologists, pharmacists, and peer support workers (of which I am the first in the team). My role is to provide an element of hope based on my recovery, resilience, and self-determination. I will also be able to help others navigate the service and signpost people to other peer activities within the Trust like working-together groups, recovery college, and people participation.
By tonydavid, on 1 September 2020
In anticipation of the UCL Institute of Mental Health’s first international Conference on 9th September, I posed a few questions to our speakers about their attitudes and experiences of scientific conferences. In this Covid-19 world we are having to rethink many aspects of life we previously took for granted – from the most profound to the trivial (I am not sure where conferences sit on this dimension).
The first question was: What do you most miss/not miss about ‘conventional’ (pre-Covid) scientific conferences?
For Argyris Stringaris it is the sheer randomness of the encounters that academic conferences engender. For Emily Holmes it’s about sharing cups of coffee and informal chats around the symposia. “Getting to know the people behind the research” as much as hearing about the research alone is the key. Meeting people behind the scientific papers that you have read is a truly eye-opening experience, but not always positive. Some say you should never meet your heroes. I find that I am increasing left feeling that the person whose work I have admired invariably turns out to be much younger than I had imagined. Perhaps this is evidence of a bias to equate longevity with wisdom – a self-serving bias of course. Tamsin Ford agrees – except it’s “a good-sized mug of tea” that she yearns for rather than coffee, but certainly not the jet lag, the delays in immigration and the inevitable traveller’s fatigue.
This is particularly salient for Ethel Mpungu who is based in Uganda. “At the moment, I do not miss ‘conventional’ (pre-COVID) scientific conferences outside my country” she says. “The fatigue from the long distance travel was just about to kill me!… For now I will enjoy the international conferences in the comfort of my office. Before Covid, in-country conferences were attended by very few individuals but with virtual conferences up to 300-500 may attend which I find absolutely amazing. I know that my work has reached so many more people in my country during the Covid pandemic than before.” And we anticipate reaching over 500 this time round.
But what of the actual ‘work’ of the conference format. Pasco Fearon laments the absence of live question and answer sessions from the floor. “I do rather miss formulating a polite answer to the inevitable left-field, really long and rambling question – posting questions online and having the chair choose them has killed that sport.” (We will try and keep this sport alive on September 9th). But who misses those other staples: “This isn’t so much a question as a comment…” and the embittered, entitled question that barely conceals the admonishment: why didn’t you cite my work?
Finally there is the longing for international travel and cultural exchange. For Rick Adams it’s the glorious Italian food at the Schizophrenia International Research Society in Florence every other spring, and American music at Society of Biological Psychiatry.
The second question put to our guests was: What scientific conferences do you most enjoy? eg., small focussed symposia? Large scale extravaganzas?
Here I can report that the data were fairly consistent and convincing. The small symposia were considerably more appreciated – “small all the way” according to Rick Adams – but even here it is hard to separate the academic aspects from those more social. Pasco Fearon again: “I much prefer the smaller conferences where there’s a tighter focus on an area of interest; old friends and new stars get to meet, talk in-depth and socialise. I find the big conferences a bit like the Total Perspective Vortex in the Hitchhiker’s Guide to the Galaxy!”
Some like to have their cake and eat it. “I love small focussed symposia (which allow discussion and debate)”, says Emily Holmes, “…but within Large scale extravaganzas to catch up on the big picture.” The same story comes from Tamsin Ford, for whom it’s the American Academy of Child and Adolescent Psychiatry’s ‘research institutes’, “… where a whole day is devoted to a project – some of these have been excellent” – a kind of small-within-large format.
Clearly if it’s about getting your message out to the largest number of people, the large-scale events deliver on their promise and that is what swings it for Ethel Mpungu. For Jim Gold it’s all about catching up with old friends – more likely in the big international events – although for him the real purpose seems to be seeing who has or has not aged well. It reminds me of a class reunion I went to – often the scene of repressed competitiveness – where the most coveted prize was, not for the most successful or wealthy but for the person who looked most “well preserved”.
The final question was as follows: What is the single most important scientific/clinical question in our field right now?
Perhaps surprisingly given the scope of the question, there was something approaching a consensus. For Jim Gold and Ethel Mpungu – it’s simple. “When will clinical neuroscience actually impact clinical care at a large scale?” says Jim, while Ethel wants to know, “How interventions work and for whom”. Argyris Stringaris is equally succinct: “What is mood and how to influence it?”
Pasco Fearon circles the question before homing in: “How can we make programmatic mental health prevention really work? It’s one of the holy grails of the field, but it’s fraught with difficulties.” But like all good research, attempting to answer one question always leads to many more: “How do we sustain intervention effects over long periods of time? In child psychology and psychiatry there are a good number of prevention and intervention strategies that seem to be helpful in the short-term, but their benefits often fade over time. Good strategies for maintaining treatment gains might sometimes be quite different to the strategies that affected change in the first place, but we rarely think about this thoroughly or study it.”
Emily Holmes also wants to take a run-up before jumping on the major questions. She says: “To dream big and really help people with mental health difficulties, we are going to have to transform our culture … For example, how can we move from studies about ‘description’ (merely counting, describing, knowing if something works or not) to learn to best change what is troubling someone and derive novel interventions to transform mental health?”
But we cannot escape the challenge of the moment. For Tamsin Ford the biggest question for us to address right now is “The impact of Covid and the recession on the mental health and development of children and young people” but perhaps she would say that. Rick Adams is also acutely in tune with the times. When preparing for a scientific lecture, the question at the forefront of his mind is:
“Has someone forgotten to mute themselves?”
When Private Optimism meets Public Despair: People adapt to threats like Covid-19 by maintaining positive and protective biases while reducing negative perceptions and emotions
By Maria Thomas, on 29 June 2020
This blog was written by PhD Student Laura K. Globig from the Department of Experimental Psychology, UCL.
Humans tend to be optimistic. They overestimate their financial prosperity and marriage longevity, while underestimating their risk of disease, such as cancer or suffering other hardships, like being burgled (Sharot, 2011, Weinstein, 1980).
What is surprising about such observations is that anecdotally, people also often express pessimism regarding the state of society as a whole. Following the financial collapse of 2008, polls showed that people were extremely pessimistic about the financial future of their country. By contrast, they were optimistic about their own financial prospects (Ipsos MORI, 2008).
Now these seemingly opposing but coexisting beliefs integrate to shape a person’s response becomes especially relevant when danger faces the self and others. How someone estimates their own vulnerability will likely affect their well-being and the choices they make. Simultaneously, someone’s predictions about the vulnerability of society at large could also affect their personal well-being and behavior. The latter is particularly pertinent, when one’s own behavior can affect others’ well-being.
As COVID-19 swept the globe and stay at home orders were issued we surveyed a representative sample of 1145 Americans in 30 states across two timepoints. Our aim was two-fold: 1) To investigate how people perceived the danger COVID-19 posed to themselves and to their fellow citizens. 2) To determine how these perceived risks influenced their own well-being and behavior.
We found that people believed they were at lower risk of getting COVID-19 relative to others their age and gender. We refer to this as private optimism. At the same time, people also believed that COVID-19 posed a tremendous danger to the health of the human population as whole. We refer to this as public pessimism.
We found that private optimism can be explained by people’s sense of control. People believe their fate is in their own hands, and thus they believe they can avoid negative outcomes (Zakay, 1984). During the pandemic, this may relate to people believing they are in control over being exposed to the virus. This then leads them to believe they are less likely than others to catch the virus. But because this sense of control does not extend to society, they are less optimistic about global issues. We cannot control how others behave during the pandemic.
Those who were optimistic about their own chances of being infected were also happier and less anxious compared to those who were not. How people estimated the danger posed by COVID-19 to society as a whole however did not influence personal happiness, but did affect anxiety. Those who were pessimistic about the danger to society, were more anxious. Thus, our perception of our own vulnerability can influence both positive and negative aspects of well-being, while how vulnerable we perceive others relates specifically to anxiety.
When it comes to slowing the spread of COVID-19, to what extent we adopt preventative measures, such as social distancing, not only mitigates our own risk of getting infected, but also that of others. It enables us to protect those who are particularly vulnerable.
Our study shows that public pessimism predicted how likely people were to adhere to public health advice to slow the spread. That is, people who believed the virus posed a great danger to society as a whole reported putting greater effort in social distancing, hand washing and avoiding touching their faces. How people considered the risk to the self, however, did not affect compliance. This suggests that people predominantly engage in protective behaviors for the benefit of others.
Finally, we also observed that people adapted well to the restrictions imposed by the pandemic. Their well-being increased as lockdown progressed. Compared to the start of lockdown, people were less anxious and reported an increased sense of control. They considered the danger of COVID-19 to humanity as less than they did at the beginning of lockdown. Private optimism and happiness remained stable throughout. This suggests that humans adapt to threats by maintaining positive and protective biases while reducing negative perceptions and emotions.
We surveyed Americans across 30 US states, thereby allowing us to sample a diverse representation of US citizens. Notably, we did not observe an effect of state or number of COVID-19 cases or COVID-19 related fatalities at the time of testing. It is therefore likely that our findings will also apply to other countries, such as the United Kingdom.
Rather than an effect of location, we did find that political orientation, age, gender and socioeconomic status had a differential effect on well-being and behavior. Older individuals and females were more like to comply with government advice related to COVID-19 mitigation. Moreover, those with high income were happier. Finally, males and republicans were more likely to express private and public optimism. Additionally, younger individuals were also more likely to express private optimism. Future research is needed to explore how government policies in response to COVID-19 influence well-being and behavior. There may well be differential effects on an international scale.
Given the recent decline in COVID-19 cases and easing restrictions, it is possible that risk perception in general will decrease, due to the actual risk of infection being reduced. Nevertheless, some preliminary data we collected indicates that people still consider the risk of getting infected themselves as low, relative to others of same age and gender. More work is needed to explore how this optimistic tendency relates to reports of an increasing number of people believing they have already contracted the virus and are thereby immune. As official statistics indicate the true percentage of the population that has actually tested positive for COVID-19 is still relatively small. Therefore, it is in fact possible that the belief to have had COVID-19 already is in itself, also a form of private optimism in which people falsely believe they are immune, and thereby no longer at risk of infection.
One might believe that private optimism may deter individuals from getting vaccinated against COVID-19 once a vaccine becomes available. However, vaccinations rely on the concept of herd immunity and thereby only work to prevent the spread of infectious diseases if the majority of the population is vaccinated. They could therefore be considered a form of behavioral compliance to protect those who are vulnerable and thus one’s willingness to get vaccinated likely relies more on how we estimate the danger to the human population. Of course, this relies on effective communication and education of the public.
There is reason to believe, that the paradoxical existence of private optimism and public pessimism generalizes to other threats such as war, financial collapse and climate change. For example, we speculate that people’s tendency to make “green choices” is linked to the belief that climate change poses a threat to humanity, regardless of whether they believe that they are themselves at risk. Such knowledge can be useful for advocates and policy makers in framing information to encourage individuals to select actions that protect themselves and others from natural and man-made threats. In the future we also hope to explore the mechanistic link between sense of control, private optimism and well-being further. If we can strengthen people’s sense of control, we might be able to harness the positive effects on personal well-being in times of crisis.
Globig, L. K., Blain, B., & Sharot, T. (2020, May 29). When Private Optimism meets Public Despair: Dissociable effects on behavior and well-being. https://doi.org/10.31234/osf.io/gbdn8
Ipsos MORI. (2008). Political Monitor, March 2008, [UK]. [Data set]. Retrieved from: https://www.ipsos.com/ipsos-mori/en-uk/ipsos-mori-political-monitor-march-2008
Sharot, T. (2011). The optimism bias. Current Biology, 21(23), R941–R945. https://doi.org/10.1016/j.cub.2011.10.030
Weinstein, N. D. (1980). Unrealistic optimism about future life events. Journal of Personality and Social Psychology, 39(5), 806–820. https://doi.org/10.1037//0022-35126.96.36.1996
Zakay, D. (1984). The Influence of Perceived Event’s Controllability on Its Subjective Occurrence Probability. The Psychological Record, 34(2), 233–240. https://doi.org/10.1007/BF03394867
By Maria Thomas, on 4 May 2020
This blog has been guest written by PhD Student Tayla McCloud, UCL Division of Psychiatry.
It is difficult to think of anyone who is unaffected in some way by the current coronavirus pandemic and resulting UK lockdown. Whilst practical adjustments and physical health concerns spring to mind, there are myriad mental health implications, too.
Results from two early online surveys conducted by the mental health charity MQ and the Academy of Medical Sciences (AMS) showed that the main concerns among people with lived experience of a mental illness and others in the general population were the impact of the pandemic on anxiety, isolation, and access to support. These are likely to affect everyone to differing degrees throughout the lockdown.
On April 15th, a team of prominent psychiatric researchers published a piece in Lancet Psychiatry calling for high-quality research monitoring the mental health impact on the general population overall and in specific vulnerable groups. These are defined as including children and young people affected by school closures, older adults who may be isolated, and frontline healthcare workers. This is undoubtedly of utmost importance.
One group also experiencing a lot of disruption, though, is university students. Universities have been forced to close physically, meaning that this year’s exam and graduation season has been upended. Teaching is being conducted remotely and assessments have mostly been moved to different formats online. Like primary and secondary education students, university students will be adjusting to a completely new routine and way of learning.
Unlike primary and secondary students, though, for university students studying ‘at home’ may mean moving back in with parents in a completely different city, town or even country to where they usually study. This is likely to be a considerable upheaval at an already difficult time, with concerns around when it will be safe to return, but students who do not go back to where they lived before university risk being left to live alone without their usual support networks as many others leave.
Most university courses are attempting to continue as close to normal as possible, delivering teaching remotely, which means assessments are still largely going ahead. This means that students are under a lot of pressure to be as productive and focused as usual during what is a very tough time psychologically. Without access to libraries and equipment, they also may not have the resources or study spaces they usually have in which to complete their work. Under-performance, as well as the pandemic itself, could negatively impact their future career.
For these reasons, among others, university students may be at increased risk of experiencing negative mental health consequences of the coronavirus pandemic. It is, however, difficult to know this without relevant data.
This is where my PhD project, the SENSE study, comes in. SENSE is a longitudinal survey of the mental health of UCL students, conducted online beginning in October 2019. The last wave was in February 2020 and the next wave will begin shortly, in May. It covers such areas as students’ demographics, accommodation, financial situation and social lives, and we are adding new questions relating to the pandemic. This means that we will be able to compare UCL students’ mental health before and during the UK coronavirus outbreak. This could help us to understand more about which groups are more vulnerable to the impact of UCL’s closure and the UK lockdown, potentially highlighting areas for intervention. Follow @SENSEstudy on Twitter for updates, or visit our website www.sensestudy.co.uk.
I am also involved in a new study, You-COPE, which aims to measure the mental health of young people aged 16-24 in the UK throughout the lockdown and public health response and in the months afterwards. Follow me on Twitter (@TaylaMcCloud) for updates on this when it launches. This will include university students as well as non-students, and as such will complement the SENSE data findings and allow comparisons between these two groups.
I am attempting to continue this PhD work as usual, whilst conscious that I am a university student living through the coronavirus pandemic researching the mental health of university students during the coronavirus pandemic. It can be difficult to continue work as a “professional” when your work involves focusing on how students are being negatively affected.
Being a student who is researching student mental health is often quite odd like this. I talk about ‘university students’ in the third person, making hypotheses about this abstract group that it is easy to forget I am part of. I often bring my own university experience into the conversation as an example, as do my supervisors, but I am usually referring to a (somewhat) far away undergraduate version of myself and not my present experience. PhD students occupy a confusing space somewhere between staff and student that means we never quite feel like either.
The current coronavirus pandemic, and the resulting UK lockdown and UCL closure, has undoubtedly impacted my PhD work, as well as seemingly every other aspect of my life. I am trying to use this as an advantage; considering how I can use my experience as a UCL student during this time to inform my research, and my interpretation of the findings of this research. I hope that this will add value to the research I am conducting, and that SENSE and You-COPE will be able to shed new light on our understanding of the mental health of university students at a time when they may be particularly vulnerable.
By Maria Thomas, on 27 April 2020
This blog has been guest written by PhD Student Anne Gaule, UCL MRC Doctoral Training Programme in Neuroscience and Mental Health and research student in Department of Clinical, Education and Health Psychology, UCL Psychology and Language Sciences.
Much like most PhD students I imagine, I followed the news over the last weeks of February closely, wondering how I was going to be able to continue with my research if we entered a lockdown. I am in my third year of the four-year UCL MRC Doctoral Training Programme in Neuroscience and Mental Health. My PhD focuses on social information processing in adolescence, and how this may be affected in children with a history of conduct disorder. This means that a key part of my project is data collection in schools.
At this point I have nearly finished collecting data for one task. I have also been developing new tasks that are engaging and suitable for children whilst having the power required for my stats. Fortunately, (and surprisingly) everything was going according to plan and I was on track to start my piloting and data collection. Unfortunately, I’d planned to start this in March 2020.
For some background, the three new tasks that I have developed need to be run individually with each child at their school and with experimenters present. I have also developed a child version of an adult questionnaire to complement these tasks that needs validation before it can be used. For the new behavioural tasks, I need at least 90 children to take part – on top of piloting. For the questionnaire, 600 children must take part in order to run full analyses. To submit my thesis by the summer of 2021, I was hoping to have finished collecting data by October 2020 (the optimistic scenario), Christmas at the absolute latest. With around 250 questionnaires completed so far and my new tasks only at the piloting stage, I still have some way to go and the disruption from COVID-19 is putting serious brakes on this process.
My PhD project is a collaboration between our research team and the schools we work with and, as such, it requires time and organisation on both sides. When working with schools, whether mainstream or alternative provision, I am primarily working with teachers who are under an incredible workload. Despite already being overwhelmingly busy, they are generously offering to give up their time in order to help us to carry out this research – which we are all hoping may, in the long run, benefit the children they teach. I am hugely grateful to these teachers and I try my hardest to work around their schedule when setting up recruitment and data collection.
Practically, this translates to a huge number of phone-calls and emails – not to mention keeping track of who you’ve been in contact with and when. We also need consent from parents, which involves the school sending forms and leaving a two-week response period (and getting in touch with busy parents can be as tricky as getting in touch with busy teachers). Once we begin working with a school we need a quiet space on school grounds where we can work with the children relatively undisturbed – not necessarily easy during a busy school day. Finally, testing sessions themselves can also be challenging. We try our hardest to accommodate the children we work with, who are participating entirely voluntarily even if they have parent consent. If a child is having a bad day, we will come back on a different day, or break down the session into smaller sessions. The challenging behaviour of some of the children means the sessions sometimes won’t run smoothly or may take longer than planned. Consequently, an extended period of time has to be factored in for data collection on a project such as this. You can imagine how it felt when, after months of work to set up the data collection operation and with several schools having agreed dates in March for us to work with the children, I then had to cancel all of them. Naturally my anxieties about data collection are not comparable to the impact of this crisis on the schools that we work with – many of whom have vulnerable students whom they continue to support during this crisis. However, it’s hard to see how and when the face-to-face testing can move forward until there is more clarity on when we will emerge from this crisis.
Despite these anxieties, I want to reflect on the fact that I have also been incredibly lucky. I have received a huge amount of support since UCL has closed. For starters, my programme was very quick to notify us that, no matter what stage we are at in our PhD projects, we are all guaranteed an extension of some kind. This has been a huge load off my mind. My supervisor has provided guidance on how to adapt those aspects of my projects that can be conducted online (the questionnaire, for example, is easily transferable) and we have also discussed working on the literature review aspects of my thesis. As all the work I do involves children under the age of 18, whether vulnerable or not, I have had to submit amendments to my ethics in order to adapt various aspects of my data collection – such as taking parental consent online, and recruitment via social media instead of contacting schools directly. Here again I was happy to find that UCL has provided clear guidelines on which projects needed to submit ethics amendments for minor adaptations to protocol for online testing, and the best way to go about doing so. My department has been sending me updates about the UCL’s news and response to the crisis – including specific updates for doctoral students – and also immediately sent us guidance on how to set up to be able to work remotely, so I’ve had continued access to all of my files. My lab has set up regular meetings so that we feel less isolated now that we are no longer to leave our homes.
The immediate support from my programme, department, and supervisor has been a huge relief. I have actually started to enjoy the time I now have to read and to begin writing my thesis. I also believe that as the lockdown conditions ease, I may be able to collect data with the help of other team members, and complete my PhD on time.
National Hospital for Neurology and Neurosurgery: response to the COVID-19 emergency by Jennifer Foley, Edgar Chan, Natasja Van Harskamp & Lisa Cipolotti, UCL Queen Square, London.
By tonydavid, on 17 April 2020
The Department of Neuropsychology of the National Hospital for Neurology and Neurosurgery: response to the COVID-19 emergency
Jennifer A. Foley, Edgar Chan, Natasja Van Harskamp & Lisa Cipolotti
Department of Neuropsychology, National Hospital for Neurology and Neurosurgery, Queen Square, London.
At the time of writing, over 137,000 people worldwide have died with COVID-19 coronavirus. Since the first UK death less than one month ago, almost 13,000 people have now died, with numbers continuing to rise. The UK is in lockdown: ‘non-essential’ businesses and places of worship are closed. Similarly, schools are closed, except for children of key workers. People are only permitted to leave their houses for food, health reasons, one hour of exercise or essential work.
The COVID-19 emergency has required us all to rethink how we work. In the NHS we have had to restructure our clinical services. At the National Hospital for Neurology and Neurosurgery (NHNN), a leading tertiary referral neuroscience specialist centre in the UK and part of University College London Hospitals NHS Foundation Trust (UCLH), two inpatient wards have been dedicated to COVID-19 patients. In response to the rising bed pressure at UCLH, the Hyper-Acute Stroke Unit has been transferred to the NHNN and a new ‘Emergency Stroke Unit’ created. As a consequence, the discharge of inpatients has been greatly expedited. To prevent the spread of COVID-19, the NHNN has been placed in lockdown; all visitors are prohibited, even for patients who are very sick and dying. Non-urgent outpatient clinics have been cancelled, with those remaining mostly provided by telephone. Outpatients deemed to be ‘extremely vulnerable’ by Public Health England have been advised to shield for 12 weeks and instructed not to leave their houses, even for shopping or medication.
Clinical staff has to work at a quicker pace, in longer shifts and in smaller teams because of increased staff sickness. They must provide more general medicine and have to learn how to use personal protective equipment (PPE). Academic staff has been redeployed clinically and some staff members have been redeployed to the new London NHS Nightingale Hospital. All staff have to work knowing that they might contract COVID-19, potentially placing themselves and their own household at risk.
In response to the COVID-19 emergency and the changes in clinical care at NHNN the Department of Neuropsychology reconsidered its priorities and how best to quickly respond to the new needs. We developed brand new services to support our staff, patients, and families and carers and took urgent action to provide top-class neuropsychological care. Here, we provide a description of how we have achieved this over the past two weeks.
The Department of Neuropsychology at NHNN
Neuropsychology is a highly specialised branch of clinical psychology, whose main focus is on addressing fundamental questions about the relationship between brain and mind. We investigate how changes in brain functioning caused by neurological disorder affect how we think and how we behave. Neuropsychologists are not only trained in general mental health, but also have additional qualifications and substantial specialist knowledge in the neurosciences.
The Department is one of the most renowned and prestigious in the world. Each year we treat approximately 6,700 patients. Our main clinical role is in the assessment, management and treatment of patients with complex neurological, neuropsychiatric and neurosurgical conditions. To meet this need, we have developed a flexible, adaptive and rapid neuropsychological assessment protocol, designed for speed of administration, reliability/validity, as well as detecting change from baseline. Our assessment comprises a brief clinical interview and formal evaluation of thinking skills, including general intelligence, memory, language, perception, frontal ‘executive’ functions and speed of information processing, in addition to assessment of mental health. These thinking skills are assessed with tests developed to be reliable, valid and graded in difficulty, and suitable for people of diverse backgrounds and abilities.
We have also developed a wide range of specialised treatment programmes. These mainly focus on group interventions to help patients cope with the neuropsychological sequelae of neurological conditions. We provide strategies to help reduce the impact of deficits of memory, planning, attention and other cognitive impairments on daily living. We also provide one-to-one support to mitigate anxiety and depression, and to support adjustment to the life changes precipitated by a variety of neurological conditions.
The Department plays a role in generating world-class clinical research, publishing approximately 40 peer-reviewed research papers each year. Our research strategy aims to improve diagnostic assessment and further the understanding of brain disorders and cognitive functioning. Recent focus has been on acquiring knowledge to help improve NHS neuropsychological service provision through: development of new tests to allow better identification of frontal executive and nonverbal memory impairments; development of new brief cognitive screening tools; and improved characterisation of the reliability and stability of neuropsychological tests over time, to allow objective monitoring of patients’ thinking skills. We also undertake research addressing questions regarding the neural architecture of cognitive domains, such as frontal executive functions, memory and language, and the characterisation of specific neurological conditions.
Support services for staff
The perceived availability of direct psychological support for staff is crucial for psychological wellbeing in times of crisis (e.g. Khalid et al., 2016). Hence, we have established a psychological support service for all staff. We have developed twice-weekly, face-to-face, walk-in clinics and daily telephone clinics. Our experience, so far, indicates that staff members greatly appreciate our support services. Despite the fact that our services started very recently, we have good intake that continues to increase.
Recent studies emerging from China specifically focusing on the COVID-19 emergency reported that overall there was little uptake of formalised psychological support (Chen et al., 2020; Zhu et al., 2020). It remains unclear what type of support is most effective. Some studies have suggested that it is more helpful to focus on enabling staff members to meet their basic needs: health (adequate PPE), shelter (especially if having to isolate from family members), food and sleep (Chen et al., 2020; Khalid et al., 2016; Khee et al., 2004). Some of these studies have relatively little data (Chen et al., 2020), include few or closed questions (Dai et al., 2020), and/or non-anonymised data collection (Lee et al., 2005; Khee et al., 2004). These factors may somewhat limit the generalizability of their findings. Notably, no formal study has assessed staff members’ psychological needs during crisis in the UK. Therefore, we have developed an online survey to assess staff members’ distress and psychological needs, including access to basic provisions and usual coping strategies, as well as desire for informal or formal psychological support. The data will help us refine our support service response and inform future practice.
Neuropsychological services for inpatients
The Department has developed a highly specialised service to meet the demands of the increased number of acute stroke and neurosurgical inpatients within the time constraints of a very fast medical environment. We continue to provide comprehensive cognitive assessment where necessary, while also adopting a briefer specialist assessment model that draws upon previous work (e.g. Chan et al., 2019). In addition, we have developed a fast-turnaround reporting system to support early discharge and strengthened our work with multi-disciplinary teams to provide support for complex cognitive and behavioural difficulties. The quick discharge of patients with significant cognitive impairment has resulted in patients receiving only minimal rehabilitation in hospital. To support rehabilitation planning, we have focussed on building stronger links and outreaching to community services and relevant charity organizations such as Stroke Association.
Neuropsychological services for outpatients
Outpatient diagnostic services have been significantly delayed resulting in reduced care for patients with chronic and life-limiting neurological conditions. However, acknowledging that some assessments remain essential even during these times, we are continuing to provide face-to-face outpatient cognitive assessments for all urgent cases, with both clinicians and patients wearing PPE. We have deemed this to be necessary given the limited empirical evidence for either the validity or utility of diagnostic tele-neuropsychology (e.g. Bunnage et al., 2020).
For outpatients who have little social contact, isolation and delayed clinical care threatens to create a pandemic of loneliness (Armitage & Nellums, 2020; Van Bavel et al., In Press). The impact of this, exacerbated by increased exposure to negative framing within the media, will heighten stress responses. This may have a potential catastrophic impact upon mental health outcomes (Garfin et al., 2020). As far as we are aware, there are no evidence-based guidelines on how to manage patients’ distress at this time. Nonetheless, it is clear that patients need to be supported. Hence, we are offering all patients offered a rescheduled neuropsychological outpatient appointment a telephone consultation for interim psychological support. To relieve the burden upon already stretched clinical nurse specialists, GPs, community teams and voluntary sector helplines, we have also extended this service to all of the NHNN outpatients and stroke patients within North Central London.
Furthermore, those who had psychological difficulties before the current COVID-19 crisis are most vulnerable to exacerbated distress (Duan & Zhu, 2020). Therefore, we have not stopped any ongoing neuropsychological therapies and continue to accept all new routine referrals for ongoing psychological support. These appointments have now been converted to telephone clinics.
Support services for patients’ families and carers
For family members of inpatients with neurological conditions and/or COVID-19, we have started providing telephone consultations. For families and carers of stroke and neurosurgical patients, we have developed telephone psychoeducation about cognitive and emotional sequelae, and signposting for any ongoing needs.
In sum, we hope that our new support services not only contain and mitigate psychological distress, but also will allow us to research the psychological needs of staff, patients, their families and carers. By redesigning our existing neuropsychological services, we do not delay, but instead respond rapidly to the significant changes and increased demands caused by the COVID-19 emergency. These new services may be helpful in providing empirical evidence to determine which interventions are most useful. This will in turn inform future guidelines, should we have to face a resurgence of COVID-19 or another pandemic.
Armitage, R. & Nellums, L.B. (2020). COVID-19 and the consequences of isolating the elderly. The Lancet. Public Health; Mar 20.
Bunnage, M., Evans, J., Wright, I., Thomas, S., Vargha-Khadem, F., Poz, R., Wilson, C & Moore, P (2020). Division of Neuropsychology Professional Standards Unit Guidelines to colleagues on the use of Tele-neuropsychology. Division of Neuropsychology, British Psychological Society; Apr 20.
Chan, E., Garritsen, E., Altendorff, S., Turner, D., Simister, R., Werring, D. J., & Cipolotti, L. (2019). Additional Queen Square (QS) screening items improve the test accuracy of the Montreal Cognitive Assessment (MoCA) after acute stroke. Journal of the Neurological Sciences, 407, 116442.
Chen, Q., Liang, M., Li, Y., Guo, J., Fei, D., Wang, L., He, L., Sheng, C., Cai, Y., Li, X. & Wang, J.(2020). Mental health care for medical staff in China during the COVID-19 outbreak. The Lancet Psychiatry, 7, e15-e16.
Dai, Y., Hu, G., Xiong, H., Qiu, H. & Yuan, X. (2020). Psychological impact of the coronavirus disease 2019 (COVID-19) outbreak on healthcare workers in China. medRxiv.
Duan, L. & Zhu, G. (2020). Psychological interventions for people affected by the COVID-19 epidemic. The Lancet Psychiatry, 7, 300-302.
Garfin, D. R., Silver, R. C., & Holman, E. A. (2020). The novel coronavirus (COVID-2019) outbreak: Amplification of public health consequences by media exposure. Health Psychology; Mar 23.
Khalid, I., Khalid, T. J., Qabajah, M. R., Barnard, A. G. & Qushmaq, I. A. (2016). Healthcare workers emotions, perceived stressors and coping strategies during a MERS-CoV outbreak. Clinical Medicine & Research, 14, 7-14.
Khee, K. S., Lee, L. B., Chai, O. T., Loong, C. K., Ming, C. W., & Kheng, T. H. (2004). The psychological impact of SARS on health care providers. Critical Care and Shock, 100-106.
Lee, S. H., Juang, Y. Y., Su, Y. J., Lee, H. L., Lin, Y. H., & Chao, C. C. (2005). Facing SARS: psychological impacts on SARS team nurses and psychiatric services in a Taiwan general hospital. General Hospital Psychiatry, 27, 352-358.
Van Bavel, J. J., Boggio, P., Capraro, V., Cichocka, A., Cikara, M., Crockett, M., Crum, A., Douglas, K., Druckman, J., Drury, J. & Ellemers, N. (In Press). Using social and behavioural science to support COVID-19 pandemic response. Nature Human Behavior.
Zhu, Z., Xu, S., Wang, H., Liu, Z., Wu, J., Li, G., Miao, J., Zhang, C., Yang, Y., Sun, W. & Zhu, S. (2020). COVID-19 in Wuhan: Immediate Psychological Impact on 5062 Health Workers. medRxiv.
By tonydavid, on 15 April 2020
Call the psychiatrists?
Stereotypes abound regarding different medical specialists and their personalities. From aggressive, macho surgeons, nice-but-dim GPs to the mad-as-their-patients psychiatrists. The coronavirus outbreak has thrown other specialists into the spotlight. Critical care doctors are a new breed. Not selected for their bedside manner – their patients are usually anaesthetised. They are particularly skilled applied physiologists who understand oxygen saturation. In other words, a bit nerdy. Who knew they were brave too? The academic discipline of epidemiology – tired of explaining that theirs is the study of diseases in populations not ‘epidemics’, this is their moment to prove they have the statistical smarts to interpret the data, discern the trends and test the advice. Ironically, until COVID-19, public health specialists were perhaps the most beleaguered of all the non-coal face doctors practicing in the UK with large cuts to their budgets in recent years. Now they are effectively in charge with politicians supposedly following their advice to the letter. Even within that group’s medical specialism, the tide had long since turned away from infectious diseases – which normally account for a fraction of deaths in high income countries – towards ‘non-communicable diseases’: neurodegenerative conditions like Alzheimer’s, diabetes, heart disease, stroke, cancer, which are fast becoming the scourge of lower and middle income countries too.
Redeployment of ‘rear-guard’ staff to the frontlines followed by recall of retired healthcare workers to help with NHS cope with COVID-19 led to some amusing memes. The first was the blue woolly bespectacled face of Dr Grover being drafted in from Sesame Street to the ITU with the caption ‘stay home unless you want to be intubated by a psychiatrist’ and then Dad’s Army characters – ‘Don’t worry chaps, backup is coming’ with their pompous but insecure leader Capt. Mainwaring representing psychiatry.
We have all been asked to consider our mental health and offered myriad ways to preserve it during lockdown and social isolation. Much of the advice from the NHS has been reassuringly commonsensical and has pointed toward self-help and online resources. Do psychiatrists have particular role to play?
The biological effects of SARS-CoV-2 on the nervous system are not well understood. Experience from China does not suggest that we should anticipate cases of encephalitis and its inevitable neuropsychiatric manifestations as a result of direct infection of the brain in cases of COVID-19 but vigilance is required. The virus has been detected in the central nervous system in people with severe multi-organ disease. Common symptoms such as dizziness and headache and loss of smell and taste are best not seen as brain-based but rather general indicators of systemic unwellness and upper respiratory tract inflammation. The Association of British Neurologists is setting up a system to collate cases of suspected neurological COVID-19 and clinical neuropsychiatry colleagues from Edinburgh to Exeter have offered to help.
Experts interpret the life-threatening pneumonitis of the disease as a consequence of an all-out immunological response to the infection rather than the infection alone – it seems Boris Johnson dodged that particular bullet – and neurology textbooks have whole chapters on immune-mediated ‘post-infectious’ syndromes. But the contrast with a truly neurotropic virus such as polio which preferentially attacks motor nerve cell bodies could not be more stark. Some will remember the paralysing fear of paralysis which gripped families in the 1950’s and the dreaded spectre of the clumsy ventilators of the time – iron lungs.
The likely legacy of SARS, MERS and now COVID-19 includes psychiatric fall out. In those earlier epidemics, there were high rates of anxiety, depression and PTSD in the short term – although such outcomes never affected the majority. We know about them because people who recovered from infections serious enough to require hospitalisation were asked to fill out questionnaires on their experiences as part of simple research surveys. Few of the studies had controls groups which would allow us to conclude whether such rates were particularly high or not. PTSD is a strange one in this context. Not that being rushed to hospital and seeing the person in the next bed gasping for air and perhaps eventually succumbing, isn’t horrific and likely to etch itself on your memory. And the scene may come back to haunt you as intrusive memories and invade your sleep. But is it really best considered a direct consequence – part and parcel – of your own illness given that your sole allowable visitor, uninfected by the virus, might have been similarly traumatised?
If there are any lessons from psychiatry at times like this is it is to hang on to a kind of natural and shared immunity which we may find deeply embedded within. Natural in the sense of non-technical. Several studies on ‘psychological debriefing’ after traumatic events, have shown that, not only does this not help it makes the situation worse. Perhaps it derails the natural processes – biological, psychological and social – that have evolved to deal with major adverse events. By ‘medicalising’ the process, however unwittingly, it seems that we expose people to more harm rather than inoculating them against it. Hence the UK wide Royal College of Psychiatrists’ sensible advice to resist the temptation to offer such services to colleagues in the frontline. We don’t need the argot of traumatisation and therapy to speak to each other of loss, or bereavement and the yearning for physical contact. Those in the frontline don’t need someone to encourage them to emote in a certain way, to list the pain and guilt, the numbness or indeed the quiet victories. They do need a good night’s sleep, personal protection, reassurance that their efforts are appreciated and the above all the chance to share and fashion stories with each other.
The urge to ‘do something’ is strong and many of my senior colleagues feel at best side-lined and at worst, guilty for not practicing physical medicine. But there is plenty for us to do. Accident and emergency departments still attract a steady stream of people whose repertoire of coping with distress is limited to stereotyped and concrete demonstrations through the medium of physical self-harm. It is expecting too much of them that they will find more adaptive ways of dealing with it at the moment. It’s difficult enough for professionals to find the right words for them, or indeed any words but we are best placed to try. Suicide – since it was first studied by Emil Durkheim in the 1890s – tends to fall at times of national crisis like war perhaps because of an enhanced sense of collective solidarity. Let’s hope that applies to this pandemic. Then there are those with serious and enduring mental illnesses – such as schizophrenia. Perhaps half a million of them in the UK, living in sheltered accommodation, hostels and bedsits, if they’re lucky. People for whom companionship and intimacy are seldom seen as unalloyed good but often as harbouring threat. Social isolation for them is the default. If you live in a world where, at the best of times, religion, TV, and the internet rather than a comfort or distraction, seem arranged to undermine your sense of self, imagine what it’s like to be in the midst of a pandemic caused by invisible lethal particles invading your body – and your mind – where everyone is a bit paranoid. When AIDS was much more of a pre-occupation than it is today, one of my patients described how her longstanding nemesis, the persecutory voice that followed her every thought, announced that he was suffering from the virus ‘himself’. Eventually the voice, that personification of threat, succumbed to the disease and fell silent. My patient enjoyed a few days of blissful respite until the virus in a final posthumous category-defying leap, infected her too, at least that was her conviction. Such people are our responsibility and they need our arm’s length support not to mention maintenance medication.
For those feeling under pressure to play a more active role, the Hippocratic dictum: ‘first do no harm’ is worth remembering. I was required to take a version of the hippocractic oath when I qualified, and it always seemed to me to be a low bar and dead-weight to idealism and ambition. But now it seems aspirational. Colleagues in behavioural science struggled to come up with a useful ploy to get people to stop touching their faces; it’s not as easy as you think. ‘Sit on your hands’ was what they settled upon. Good advice all round.
14th April 2020, London.
Professor Anthony David, is Director of the UCL Institute of Mental Health and author of “Into the Abyss: a neuropsychiatrist’s notes on troubled minds.” Oneworld Publications.
The mental health impact of COVID-19: looking forward. Why we need high-quality longitudinal studies.
By Maria Thomas, on 3 April 2020
This blog has been guest written by Dr Daisy Fancourt, Associate Professor of Psychobiology & Epidemiology at the UCL Institute of Epidemiology & Health Care and leads the COVID-19 Social Study.
Researchers have been aware for years of the adverse effects of social isolation on mental health, incidence of physical illnesses such as coronary heart disease and stroke, and mortality risk 1,2. But COVID-19 has triggered the largest enforced isolation in living human history. So predicting how this will affect mental health is extremely challenging.
A handful of studies on previous periods of quarantine have already been published. A rapid review published in the Lancet last month identified 24 studies conducted during outbreaks such as Ebola, the H1N1 influenza and severe acute respiratory syndrome (SARS). These have found that it isn’t just social isolation itself that is a challenge. Factors such as boredom, inadequate supplies and information, financial loss, and stigma can have negative psychological effects including post-traumatic stress symptoms, confusion, guilt, and anger 3, with some effects lasting as long as 3 years following the end of quarantine. People from disadvantaged backgrounds (who may face greater financial burdens), young people (for whom there may be significant disruption to their planned education and career pathways), and people with lower educational qualifications appear to be especially vulnerable 3. Even once quarantine measures are lifted, studies have found the persistence of problems including long-lasting changes in health behaviours (e.g. insomnia and lasting increases in alcohol abuse), fragmentation of social engagement (e.g. avoidance of public spaces and contact with others), and adverse effects on work (e.g. reduced work performance, reluctance to work, and increased consideration of resignation) 3.
These effects are all especially concerning as they occurred after just 7-30 days of isolation. Our isolation is anticipated to last significantly longer than this and is happening not just in certain towns and regions but across the globe. Consequently, there could be major immediate and lasting implications for the NHS and mental health services. So it is imperative that we dynamically capture the experiences of individuals and identify potentially protective activities during this period of isolation so that more specific guidance can be given to mitigate against adverse effects. It’s also key that we track what the emerging mental health problems are to enable the development of evidence-based social policies and services that can support individuals beyond the end of this epidemic.
In light of this, UCL has launched a large-scale UK study into the effects of COVID-19 on mental health. The study aims:
- To understand the psychological and social impact of Covid-19
- To map how the psychosocial impact evolves over time as social isolation measures get stricter and once measures are relaxed
- To ascertain which groups are at greatest risk of adverse effects
- To explore the interaction between psychosocial impact and adherence to healthy and protective behaviours
- To identify activities during isolation that could buffer against adverse effects
Already, 50,000 people in the UK have taken part and are completing weekly online surveys. We’re producing weekly reports on findings and working with government, public health bodies and the NHS to help shape the support and advice that people are receiving. We’re also starting telephone interviews exploring the experiences of vulnerable groups in more detail.
We’re not alone in this endeavour. UCL is co-leading a new network of international longitudinal studies focused on mental health, working with teams internationally to harmonise measures and undertake collaborative analyses.
Mental health research right now is critical. Finding ways to support people whilst they stay at home will help reduce the pressure on NHS services both for mental health and other health conditions, and could increase adherence to government guidelines. Further, the findings from research will support us in understanding the adverse effects of isolation in more detail and in preparing for future epidemics.
Also, the findings from this research may not all be negative. Lessons following previous epidemics such as SARS include the amazing ability of people to bounce back and even find some positives amidst even the most adverse experiences. What’s more, Covid-19 has focused attention on which jobs really are the most important within society, giving prominence and status to individuals in roles now designated as ‘key workers’ that have previously not been so well acknowledged or valued. Whether this translates to changes in subjective wellbeing amongst these groups will be interesting to discover.
To take part in the study, visit www.covid19study.org or click on this link: https://redcap.idhs.ucl.ac.uk/surveys/?s=TTXKND8JMK. To find out more about the study and see reports, visit www.marchnetwork.org/research. If you are running a longitudinal mental health study of COVID-19, register details of it with the COVID-Mind International Network here: https://www.surveymonkey.com/r/covid-mind-network
- Valtorta, N. K., Kanaan, M., Gilbody, S., Ronzi, S. & Hanratty, B. Loneliness and social isolation as risk factors for coronary heart disease and stroke: systematic review and meta-analysis of longitudinal observational studies. Heart 102, 1009–1016 (2016).
- Holt-Lunstad, J., Smith, T. B., Baker, M., Harris, T. & Stephenson, D. Loneliness and Social Isolation as Risk Factors for Mortality: A Meta-Analytic Review. Perspect. Psychol. Sci. 10, 227–237 (2015).
- Brooks, S. K. et al. The psychological impact of quarantine and how to reduce it: rapid review of the evidence. The Lancet 395, 912–920 (2020).
The impact of COVID-19 on people with severe and complex mental health problems. Concerted action needed urgently.
By Maria Thomas, on 30 March 2020
While we are all adjusting ourselves mentally to the viral pandemic, spare a thought for those with the most severe mental disorders and people caring for them. Helen Killapsy, Professor of Rehabilitation Psychiatry, Division of Psychiatry, UCL writes about people living in supported accommodation often staffed by people who are neither NHS or local authority care staff.
The COVID-19 emergency presents an unprecedented challenge to us all, but people with particularly complex mental health problems need special consideration. Around 20% of those who develop a major psychotic illness such as schizophrenia or schizoaffective disorder have ongoing symptoms that don’t respond well to the usual medications or treatments. For this group, there are often accompanying cognitive and functional impairments that impact negatively on the person’s interpersonal skills and ability to manage basic everyday tasks such as self-care, cleaning, shopping and cooking. Mental health rehabilitation services work with people with problems such as these. Due to the severe nature of their symptoms, more complex medication regimes are commonly needed, including clozapine, long acting injectable antipsychotic medications and mood stabilisers, that require regular administration and monitoring through routine blood tests. Many will also have long term physical health conditions as well, including pulmonary and cardiovascular illness which put them at greater risk of more severe infection and, potentially, death from COVID-19.
There are about 5000 inpatient mental health rehabilitation beds in England provided by the NHS and independent sector. In the community, around 30,000 people with complex mental health problems live in supported housing services provided by the non-statutory and voluntary sector, where non-clinical support staff are available up to 24 hours a day to help people manage their activities of daily living, supervise their medication and enable their engagement in community based activities that promote recovery, such as leisure, education and supported employment. Community mental health rehabilitation teams operate in about half of NHS mental health Trusts across England to provide specialist clinical input to people with complex mental health problems living in supported accommodation. In areas where there is no community rehabilitation team, this function is provided by a standard community mental health team.
Over the last few days, it has become clear that staff working in inpatient and community based rehabilitation settings are really struggling to help service users follow Public Health England (PHE) guidance on handwashing, social distancing and self-isolation to reduce the spread of COVID-19. Due to their mental health problems, many service users find it difficult to concentrate and take on board instructions. Many cannot understand the importance of following the advice and staff cannot enforce it. As the number of cases rise and staff fall sick or have to self-isolate, the system’s ability to provide the essential treatment and support that this group need will come under immense pressure. The situation is further exacerbated by a lack of clear guidance about the use of, and access to, Personal Protective Equipment (PPE), particularly for staff working in mental health supported accommodation, some of whom are questioning whether they should come to work unless PPE is available. The British Medical Journal has just published a stark warning about the risks of a lack of PPE in care homes (1) but supported housing services also need to be included in planning and guidance.
Most staff working in supported housing have no previous experience of working within a clinical environment and urgently need training to know how and when to use PPE. Furthermore, supported housing services vary widely in configuration, with some provided in communal settings and others providing on-site staff support to people living in individual or shared apartments. Generic guidance for supported accommodation services about managing COVID-19 needs to be interpreted locally for each individual service. Local Authority and NHS mental health rehabilitation leaders need to work together urgently to provide tailored advice to enable these services to keep operating and to provide support as safely as possible. Arranging additional cleaning services seems an obvious priority, alongside staff trying to restrict the number of service users using communal areas at any one time, through advice and notices. Stopping group activities and closing off communal areas has been suggested but could make the situation worse in buildings with limited space if it leads to people crowding together in corridors. Further discussions will be needed about the ethics of applying PHE’s legal powers to contain individuals with severe mental health problems who are unable to follow Government guidance on social distancing and self-isolation.
In this national emergency, it seems clear that those with the most severe and complex mental health needs are going to be at significantly higher risk of negative outcomes. The situation is similarly bleak for others with high support needs, such as people with dementia or more severe intellectual disabilities. At present the COVID-19 case reporting processes do not include the level of detail that would inform the relative prevalence of suspected and confirmed cases and deaths amongst groups of people with different types of mental health problem. Initial guidance published by the Royal College of Psychiatrists for mental health clinicians on managing COVID-19 has, understandably, not yet been formulated to include the specific needs of all sub-groups (2). The appalling example of the abandoned residential care home in Spain provides a worst case scenario of what a collapse of the supported housing system could mean (3).
We need to act now to prevent a catastrophic failure in care for those in our society with the highest vulnerability. We are therefore working at pace with colleagues from NHSE and the Royal College of Psychiatrists to use existing systems for gathering facts and figures as well as more open-ended feedback from mental health rehabilitation clinicians to monitor the situation for people with complex mental health problems and to share examples of good practice and creative problem solving. This kind of activity may not win accolades as ground-breaking research, but it is an essential, concerted and constructive response that will inform practical guidance needed right now for those working in one of the many COVID-19 ‘front lines’.
London, 30th March 2020
- Gareth Iacobucci. COVID-19: Lack of PPE in care homes is risking spread of virus, leaders warn BMJ 2020; 368.m1280 (Published 27 March 2020)
- Royal College of Psychiatrists. Responding to COVID-19. Guidance for Clinicians. RCPsych, 2020. Accessed 29.3.2020
BBC News. Coronavirus: Spanish army finds care home residents ‘dead and abandoned’. (Published
By Maria Thomas, on 24 February 2020
This blog has been guest written by Rochelle Burgess from UCL Institute for Global Health – prompted by our previous blogs from Prof Tony David (Insight and Psychosis: the next 30 years and What is mental health?)
Earlier this month, the New York Times published an obituary for Dr. Bonnie Burstow, feminist therapist, professor and anti-psychiatrist. Once discovered, I promptly fell through a rabbit hole of Twitter feeds and debates reflecting on her career, most notably her critiques of a psychiatric care system that situates women’s (and everyone’s) mental health problems in the brain, instead of the problematic worlds where these brains and bodies live. This critique has always resonated deeply with me on many levels – as a mental health service user but also more systematically in my research, studying the mental health needs and treatment experiences of marginalised groups exposed to poverty, oppression and various forms of violence, in high-income and low-income settings. That day’s rabbit hole was full of people confirming the ongoing relevance of her work, viewing mental health sciences as disciplines still grappling with some pretty old problems and a rage that is as robust today as it was in the early days of Burstow’s work.
There are probably many reasons to explain this persistence. But they all converge around a long standing critique of the psy-disciplines, well-articulated by Foucault, R.D.Laing, and more recently, Thomas and Bracken’s Post-psychiatry framework, and some critical spaces of the global mental health world. Essentially, patients don’t feel seen. Not fully. Service users are seen in a partial sense – a way that prioritises diagnosis, biological and neurological mechanisms, over what it means to be in the world with a condition, and to the full range of needs of a person.
This is not for a lack of trying. Social and community psychiatry have embraced recovery paradigms and more recently, responding to calls for social interventions. Each in their own way complicates our approach to supporting a process of being ‘in’ the world and experiencing mental distress. But even in this, mental health feels a little stuck in the idea that a person is primarily their diagnosis (see – recovery in the bin movement), and what counts as treatment remains fairly narrow. We still forget the world where bodies live – in spite of the wealth of evidence we have that highlights the structural drivers of mental illness, the impacts of those drivers on treatment outcomes. But we just can’t seem to shift things, probably because the way we define the problem still doesn’t give enough space to the complex needs of people.
We need a new way. Anti-psychiatry doesn’t feel right, as that in its own way removes complexity – ignoring that there are places, spaces and people who will benefit tremendously from access to diagnostics and medications.
This is where wellbeing paradigms have something to offer. Though seen as a hot new topic popularised (and arguably distilled) by ‘happiness’ studies and indexes, wellbeing paradigms are rooted in classical philosophical concepts of Eudaimonia and hedonia – and reflect our earliest attempts to understand the roots of happiness wellbeing. For me, Hedonic perspectives, focused largely on pleasure, are less helpful here. But Eudaimonic perspectives, which looks at meaning, self-actualisation and the ‘full functioning’ of a person, provide the foundations for more holistic, meaningful and potentially radical mental health spaces – where all kinds of care are on the table.
Sociologist Corey Keys, and psychologist Carol Ryff have made considerable contributions to our understandings of how wellbeing principles relate to mental health and mental illness. Importantly, their analyses place mental health and mental illness as two separate but related spectrums, rather than the opposite ends of a single spectrum. Using a framework of ‘complete mental health’ they suggest that the absence of mental illness doesn’t automatically lead to mental health (though they are often co-related), and for this to occur, we need the presence of social, psychological and emotional wellbeing – defined as the ability to flourish. Most importantly for marginalised groups, flourishing encapsulates social wellbeing concerns beyond our relationships, demanding attention be paid to socio-political structures and the world where we live. It’s a model of person-centred care where addressing social-structural realities is as important as psychological and relational ones.
Imagine a field where this is our dominant framing? Where minds, bodies and the places they live are treated as one? Lately, I feel like we’re getting there. Daisy Fancourt is doing amazing things to push forward an evidence base for the importance of social prescribing and community networks to positive mental health, and for the biological dimensions of wellbeing. In communities where I work in the global south, a wellbeing perspective has driven the exploration and testing of intervention models that combine, within treatment programmes, psychological and community development support. Early findings from my recent pilot study of collective narrative therapy for women with complex trauma in South Africa suggests there is a positive booster effect when a focus on how to tackle problematic social environments is included in the intervention.
Burstow wanted a psychiatry/psychology that was as much about the brain, as it was about the world. This is entirely possible – all we need is a healthy dose of wellbeing.
Photo credit: MARCH network – Groups