Coping with covid: supporting autistic children through and beyond lockdown

The measures put in place to reduce the spread of coronavirus (COVID-19) have impacted almost every aspect of our lives – from our contact with family, friends and loved ones, to how we work, eat, shop, relax and learn.

Adapting to and living with these new measures has been universally challenging.  For autistic people, the changes to daily life associated with the COVID-19 outbreak present a number of additional challenges.  In this blog, we are going to discuss some of these additional challenges, with a particular focus on autistic children and young people.  We also highlight some available supports.

Change of routines

A key feature of autism is the desire to follow certain routines and/or avoid unexpected or unpredictable events. Thus, adjusting to the changes caused by COVID-19 poses particular difficulty for many autistic people, for whom changes to routine may cause additional anxiety, distress and in some cases, emotional overload.

Other autistic people may be distressed because of the lack of structure their day now has – being unable to tell one day from the next, when there are no defining characteristics, can feel particularly disorientating.

Scottish Autism have produced guidance for autistic people and their parents/carers on helping to maintain a routine and the reasons why this is important.  They explain that not only does maintaining a routine provide a sense of security and stability, it can also help to provide a sense of calmness, support emotional self-regulation and encourage health and positive habits.

Many autistic children already use visual schedules and/or calendars to let them know what is happening and what to expect next.  These can be helpful in the current circumstances to help children adapt to new routines at home, and bring some sense of predictability and control to their changed lives.

 Being at home

Another change that COVID-19 has brought about is that more people within the household are at home than is typical – for example, one or both parents/carers may be working from home, along with any siblings/other householders who are usually in education or work.

This may be present challenges for autistic people both in terms of the change to routine and also in terms of sensory issues (e.g. noise).  For example, the household being busier than usual may be more challenging for autistic people as they will subsequently have less time and/or space to themselves, which may be needed in order to self-regulate and/or avoid sensory overload.

Special interests

Many autistic people have special interests that form a large part of their daily routines, and may play a key role in enabling them to relax, self-regulate and recover from sensory overload.

The coronavirus ‘lockdown’ has prevented most outdoors activities from taking place.  Thus many autistic people may have found that their special interest is no longer open to them – from train spotting to bird watching.  The removal of this activity from their life may be experienced as particularly distressing, and make self-regulation more difficult.

School closures

The widespread closure of schools means that many parents of autistic children have found themselves responsible for educating their child at home.

Educating children at home under these new circumstances is challenging for all parents.  However, for parents of autistic children, it presents additional challenges.

Many autistic children require additional support with their learning, and may experience difficulties sustaining concentration.  Autistic children may also have additional support needs such as dyslexia or dyscalculia, which may require the use of specific approaches and/or learning aids.  This presents additional challenges for learning in the home environment for parents that are unaccustomed to providing a full time education for their child.

In school, many autistic children receive additional support in class either in a 1-2-1 or in a small group lesson from practitioners skilled in addressing these additional needs. Replicating this level of support at home is of course challenging for parents who may not be familiar with the techniques used, or skilled in their use.  They may also struggle to provide the necessary 1-2-1 support if they are also expected to work from home themselves, or have other children to care for.

Concern about their child being disproportionately affected by school closures without the skilled support that they receive in schools may also add considerable stress.  For example, the United Nations has recently noted in a briefing paper that children with disabilities and special needs are among those most dependent on face-to-face services and are least likely to benefit from distance learning solutions.

As well as adequately supporting special educational needs, there are also challenges in relation to an autistic child’s ability and/or willingness to undertake schoolwork at home.  Some autistic people have difficulties with what is termed ‘flexible thinking’. This may include, for example, the ability to see something in a new way. Autistic children may be more likely to have a fixed perception of home as distinct from school.  Thus, it may be more difficult for autistic children to accept and adapt to schoolwork being done at home.  Similarly, they may not readily accept the notion that their parent or carer is now also their ‘teacher’, particularly if this person is usually relied upon as being their primary source of comfort and safety when distressed.

Accessible home learning

While this is without a doubt a difficult situation for both autistic people and their parents/carers, the good news is that there is an increasing amount of support and sources of advice available to help support autistic people to adapt and respond to the ‘new normal’ that the coronavirus pandemic has created.

On Twitter, the #accessiblehomelearning hashtag has been trending, with people sharing lots of home learning ideas and support for parents and carers, including tools to support individuals with dyslexia and/or reading and writing difficulties.

Lucy Chetty, Head Teacher at New Struan School has also shared her top tips on education at home.  She notes that different young people will experience the changes to life differently – some will enjoy having more control over their day outside of school, whereas others will miss the routines that they are used to.

According to Lucy, happiness and fun is a key aspect of learning. Thus parents and carers should try to find something that interests and motivates their individual child special interests may be of particular help in this regard.

On a practical level, ensuring clarity is hugely important.  This includes providing clear instructions, and setting out a clear beginning, middle and end to the activity.  Also recommended is ‘chunking down’ activities into smaller pieces so that there are regular breaks, and the use of visual strips and/or timers to help illustrate how long an activity will last.

 Re-opening schools

As we look ahead to the future, there are a number of critical issues that need to be considered to support autistic children and/or adults to transition back out of lockdown.

Transitioning back into the school environment will be challenging for many autistic children, particularly those that have previously found it difficult to attend school, and/or have experience of ‘school refusal’.  For many autistic children, successful school attendance has required a great deal of input from teaching and support staff, parents and the child themselves. This is because the school environment is often experienced as being particularly challenging for a number of different reasons – for example, sensory issues (e.g. noises, smells, lighting), difficulties with processing information, and/or social communication challenges (social skills, etiquette, etc).  Many autistic children also experience heightened levels of anxiety, which is exacerbated by the school environment.

Many autistic children will need additional support with the change of routine back to school days and hours, and also with their anxiety levels – particularly if they have concerns about catching and/or spreading the virus, or if other people within the school are perceived to be ‘not following the rules’.

Additional support for transitioning back into school will be particularly important if the new school environment looks significantly different to that which the child is used to as a result of social distancing measures – for example, by attending different hours or days at school, or having different classroom set ups to allow for social distancing – both of which are options currently being considered by the Scottish Government.

Transitioning out of lockdown

In recognition of the difficulties facing many autistic people and their parents and/or carers, the Scottish Government recently announced new funding to help provide additional support in the form of an extended helpline run by Scottish Autism, and the creation of online social support groups by the National Autistic Society Scotland. 

Researchers at UCL Institute of Education are also currently conducting research into the experiences and needs of parents and carers of autistic children during the pandemic, which will hopefully help inform how they can best be supported as we transition out of lockdown and into the future, where we learn to live alongside coronavirus.

In Scotland, the Education Recovery Group is currently exploring options for stabilising the education of pupils with additional support needs as “an early priority”.

While there is still a degree of uncertainty about how and when lockdown will be eased across the UK, what is certain is that the easing of lockdown – whenever it happens – will present additional challenges for many autistic people and their parents/carers. Listening to the voices of autistic people and their parents and carers will be hugely important if they are to be successfully supported in this transition.


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The three keys to successful home working

wfh

by Scott Faulds

Over the past few weeks, we have all had to make massive changes to the way we live our lives in order to protect ourselves and those around us from Coronavirus. From the closure of gyms to the socially distanced queues outside of supermarkets, it really is impossible to imagine a single aspect of our daily lives that has not been altered in some way. Until a viable treatment or vaccine is found, it appears that we will need to get used to this, “new normal”, with social distancing measures likely to be in place for the foreseeable future. As a result, many of us are now coming to terms with working from our homes for an indefinite period of time.

The sudden shift from working in an office to working from home has required many of us to quickly adapt and get to grips with new ways of working, such as conducting meetings virtually via Zoom. A survey conducted, during the first two weeks of the UK’s “lockdown” by the Institute for Employment Studies, has found that workers who are new to working from home are more likely to be experiencing poor mental health and 50% of those surveyed are now no-longer happy with their work-life balance. Additionally, the survey revealed that a majority of workers are concerned that they are no longer getting enough exercise and have reported a variety of new physical health issues, such as loss of sleep; back/neck pain; eye strain and headaches. 

The issues raised in the Institute for Employment Studies survey are concerning, especially when it is not clear when we will be able to return to our places of work. Therefore, it is vital that we consider what actions we can take to ensure that we are able to successfully work from home, without compromising our physical and mental health. 

1. Routine

Although working from home can be challenging there are some benefits, such as significantly shorter commutes to the office, which allows us to have a little bit longer in bed. Even though it may be tempting to get up at a different time each day and get straight to work, this irregularity in your normal day-to-day routine may be having a negative impact on your mental wellbeing. 

Research has shown that sticking to a daily routine can help to reduce stress and alleviate anxiety. Therefore, even though we may no longer have as long a commute to the office, ensuring that you are waking up and getting ready for work at a regular time each day, can help to put you in the right mindset to have a productive day. 

Although it might seem like a good idea to stay in your pyjamas all day, getting dressed for work (even putting on informal clothes) helps us to psychologically prepare to start our working day. Consequently, getting changed back into comfy clothes at the end of the workday can have the opposite effect and help us enter a more relaxed state of mind. The simple act of changing our clothes can help to create a mental separation between work and home, which is important when our physical environment remains the same.

2. Breaks

Ensuring you have a good routine is clearly important when working from home. However, being sedentary and staring at a computer screen all day can negatively impact your physical and mental health. Taking regular breaks, even just to make a cup of tea, can help to break up the monotony of the working day. Research has shown that frequent short breaks are more beneficial than less frequent ones, and can improve your overall productivity. In particular, it is important not to eat lunch at our desks, as research by the University of Surrey has found that food eaten whilst you are distracted does not fill you up and can lead to overeating.

Although our morning commutes may sometimes be annoying, they did at least ensure that we were leaving the house once a day. Breaking-up your working day by doing some exercise, such as going for a short walk or following an online exercise class, can help to improve your mood. Regular exercise has even been proven to boost the body’s immune system.

3. Boundaries

Undoubtedly, working from home does involve some degree of boundary blurring between our places of work and our homes. For many this has translated into working longer hours and feeling less rested and more anxious throughout the day. As previously discussed, the physical act of getting ready and commuting to work allows our brains to shift from “home” to “work” mode. Setting out clear boundaries regarding when, where and how we work is vital to maintaining our wellbeing and maximising our productivity.

For example, although it may be tempting to work from your bed or couch, these areas are predominantly associated with relaxation. Blurring the lines between work and home in these spaces may reduce your productivity when you are trying to work and prevent you from relaxing when work is over.

Additionally, working from your bed or couch may cause you physical health problems. If you have to sit in front of a computer for an extended period, the NHS advises that you should be sitting in a chair which supports your lower back, your feet should be on the floor and your screen should be at eye level.

Final thoughts

Working from home for an indefinite period of time may not be ideal, however, it is vital in order to stop the spread of the Coronavirus. During this period of uncertainty, it is important that we look after our physical and mental health and recognise the ways in which we can improve our “new normal”.

Although it may be tempting to work from the couch in our pyjamas, research has shown that in order to maintain our wellbeing, it is vital to retain a sense of division between our home and work lives. Therefore, we can protect our wellbeing and ensure we remain productive through following a regular routine, taking frequent breaks when required and ensuring there are clear boundaries in place between home and work.

If you require any advice regarding how to work from home, you can find useful resources at ParentClub.Scot and on the NHS website.


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Guest post: Economic effects of coronavirus lockdowns are staggering – but health recovery must be prioritised

By Pushan Dutt, INSEAD

In all my years as an economist, I have never seen a graph like the one below. It shows unemployment claims in the US – observe the spike for the week ending March 21. The global financial crisis, the dot-com crash, Black Monday, oil price shocks, 9/11, none of these historic shocks are even visible in the graph.

Figures: US Department of Labor

 

The spike in unemployment claims is the proverbial canary in the goldmine. We should expect a swathe of bad economic numbers coming down the pipeline. The head of the St. Louis Fed expects a 30% unemployment rate and a 50% drop in US GDP by summer. More importantly, as the health crisis rises and crests at different times in different parts of the world, the horrifying numbers on GDP growth, unemployment, business closures are not likely to let up in the near term. Multiple countries are in a recession, and eventually, the whole world will fall into a deep recession.

The plunge from prosperity to peril will be as swift as the switch to lockdown protocols in most countries. We cannot even rely on the data we have to reveal the speed and depth of the crisis since this is collected and updated with lags. For instance, the US monthly jobs report for March collects data in the second week of March, failing to capture the massive spike in unemployment claims that appears after March 12.

In the meantime, sources such as restaurant booking website OpenTable can offer some insights into the magnitude of things. The figures below show the recent plummet in diners eating at restaurants in four countries. Observe a sudden stop in the entire restaurant industry by the third week of March.


Annual % change in restaurant diners from end of February to end of March.

Data: OpenTable

 

Combine a black swan event with missing data, and it is not surprising that markets are swinging violently.

Deep freeze

The question is not one of whether we are in a recession – we are. The more pertinent questions are: how long it will last? How deep it will be? Who will be impacted the most? And how swift will the recovery be?

These questions are complicated and even top economists must admit a lack of confidence in their answers. We are not experiencing a standard downturn. Nor is it simply a financial crisis, a currency crisis, a debt crisis, a balance of payment crisis or a supply shock.

We have not seen anything like this since the flu pandemic of 1918. Even there, identifying the effects of the flu is confounded by the first world war that took place at the same time. What we have here is something different. At its heart, we are experiencing a healthcare crisis with various parts of the world succumbing in a staggered fashion.

To slow down this global health crisis (the “flatten the curve” mantra), we have chosen to put the economy into deep freeze temporarily. Production, spending, and incomes will inevitably decline. Decisions to reduce the severity of the epidemic exacerbate the size of the contraction. While the initial decision to reduce labour supply and consumption are voluntary, this will likely be followed by involuntary reductions in both, as businesses are forced to lay off workers or go bankrupt.

Of course, government policies will attempt to mitigate these effects. Some are using traditional monetary and fiscal policies (cutting interest rates, quantitative easing, increasing unemployment insurance, bailouts). Others are trying out non-traditional methods (direct cash transfers, loans to businesses conditional on maintaining unemployment, wage subsidies).

Public health priority

How long the economic impact lasts depends entirely on how long the pandemic lasts. This, in turn, depends on epidemiological variables and health policy choices. But even when the pandemic ends, the resumption of normalcy is likely to be gradual. Countries will persist with a strict containment regime like in China today, and continue to impose travel restrictions to various parts of the world where the disease continues to spread.

The many factors at play in this complex, interlinked crisis that affects both people’s health and the global economy introduces massive uncertainty into anyone hazarding the pace, the depth and the length of the impact. As a result, we should treat any precise estimates (such as “GDP will decline by X%” or “markets have reached their bottom”) with scepticism.

Especially frustrating is the idea that there is a conflict between academic disease modellers and hard-edged economists saying that steps to slow the spread of coronavirus has trade offs. This could not be further from the truth. Among economists there is near unanimity that countries should focus on the healthcare crisis and that tolerating a sharp slowdown in economic activity to arrest the spread of infections is the preferred policy path. In a recent survey carried out by the University of Chicago, respondents universally agreed that you cannot have a healthy economy without healthy people.

The health crisis has naturally created a crisis of confidence. This, in turn, can have damaging long-term effects with continuing uncertainty leading firms and households to postpone investment, production and spending. Restoring confidence requires a singular focus on containing and reversing the spread of COVID-19.

Slowing the rate that people fall ill with COVID-19 is not the end in itself. It is a means to temporarily reduce the pressure on hospitals and give time to identify treatments and a vaccine. In the interim, we must build testing capacity, perform contact tracing, setup the infrastructure for extended quarantines, rapidly expand the production of masks, ventilators and other protection equipment, build and repurpose facilities into hospitals, add intensive care capacity and train, recall and redeploy medical personnel.

All of this is also the way to restore the economy’s health and economic policy must complement it. In the short run, economic policies should mitigate the impact of lockdowns and ensure that the current crisis does not trigger financial, debt or currency crises. It should focus on flattening the recession curve, ensure that the temporary shutdown has only transient effects, and facilitate a quick recovery once the economy is taken out of the deep freeze.

In the meantime, it’s important to also recognise that this is an unprecedented crisis. Everybody has their role to play, but nobody is infallible and uncertainty is inevitable.

Pushan Dutt, Professor of Economics, INSEAD

This article is republished from The Conversation under a Creative Commons license. Read the original article.


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Safeguarding in social isolation: how social care teams are adapting to the new normal

We are all adapting to life in “lockdown”. For many of us this is a period of transition which will require some changes to our normal daily routine, perhaps working from home or socialising less. But what if you are a vulnerable person who is already socially isolated or if the place you call home is not safe?

The First Minister of Scotland Nicola Sturgeon in a briefing to the media stressed that life shouldn’t feel normal, but for many people who work in social care or social services they are trying to carry on as normal, providing key services to some of the most vulnerable people in our communities.

Social care teams across the county are working flat out to ensure they can maintain vital services and provide support and care to vulnerable adults and at risk children. Advice has been published by the government and by professional bodies like the BASW  (British Association of Social Workers) to try and provide some guidance to frontline care staff. But the reality is that care workers, both in social work and residential care are having to adapt to new and unprecedented circumstances to keep vulnerable people safe in our communities.

Funding for councils announced to support continuity of care

Councils have been allocated £1.6bn of funding by the Chancellor, designed to help them manage the impact of Covid-19 on services, including social care. Additional measures also include £1.3bn which is designed to help the discharge of patients from hospitals to continue their care in a community setting, to free up vital NHS resources over the coming weeks.

Councils have been advised to use this money as they see fit. However, one key priority is the continuity of care for service users, particularly as the virus spreads further into the community and there is a greater chance of care staff having to self-isolate and remove themselves from the workforce for a period.

Another measure designed to help ease this pressure on frontline staff are the social care clauses included in the emergency Coronavirus bill which temporarily remove the duties placed on councils to provide adult social care to all who are eligible. Instead councils will be able to prioritise care for those they consider to be most at risk in the event that adult social care services become overwhelmed. However these measures have been met with criticism from some charities who have said they will place already vulnerable adults at even greater risk.

Concerns raised for vulnerable children

The Children’s Commissioner for England has raised concerns about children who live in chaotic households, impacted by domestic abuse or substance abuse, and the effects that social distancing could have on their physical and mental wellbeing. For many children who are on the radar of social services, lockdown could be an especially isolating and difficult time. Additional concerns have been raised about vulnerable care leavers and young homeless people.

Government plans have ensured that some places have been kept in schools for vulnerable children to continue to attend. The definition of “vulnerable children” outlined by the government advice includes all children supported by social care, including those on child in need and child protection plans, looked-after children, children with disabilities, and children with education, health and care plans. However, the plan has drawn some criticism, including around its potential for heightening stigma experienced by children, and for putting the health of foster and kinship carers at risk.

How staff are adapting to new ways of working

It is not news that even before the outbreak of Covid-19 in the UK, the social care system was under significant stress.

Increased demands on those who work in residential and domiciliary settings include the practical challenges, increasing use of PPE, infection control and refresher training regarding contingency and emergency plans for residential care homes and challenges with supplies, including food and medication for residents. Additional challenges include the social and emotional stress of residents who may not receive visitors and must, where possible, socially distance from others.

Those who work in child and family social work are having to be increasingly flexible, managing many more cases and where possible managing elements of their work remotely via telephone or videoconferencing. Essential services are being prioritised.

In some instances there have been discussions around inviting final year social work students, or students studying social care to help support staff with additional tasks, or as has been the case with the NHS inviting retired colleagues back for a period to help already stretched teams.

An uncertain next few weeks

Many social workers and care staff have raised concerns around continuing to carry out their statutory duties as the population enters a lockdown phase and the additional risks this not only places on them as frontline staff but also the additional risks it may present to vulnerable children and adults.

Many are calling for explicit guidance from government on how social carers and social workers can be best supported to safeguard people at particular risk of harm, isolation and neglect. This includes practical support like the allocation of protective equipment, the enabling of improved sharing of information via digital channels and professional support, including the implications for registration if they are unable to meet duties, timescales or usual legal compliance during this crisis.

As the care system and its staff begin to feel the strain caused by this outbreak, calls are being made for social care to be recognised and acknowledged by government and others as a vital service. While one charity, the Care Workers Charity is launching a scheme to provide grants for those care workers who need to self isolate, many of whom will do so without pay, the GMB union have warned the coronavirus crisis could lead to the total collapse of the care system. It said care staff were being left with no protection against the virus, no childcare and poverty sick pay if they become infected.

Staff safety and continuity of service are clearly the priorities for the social care sector as we begin this period of unprecedented “lockdown”. It is clear more guidance and support is needed for staff who are on the frontline as they continue to deliver vital care and support services to some of the most vulnerable people in our communities.

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An ageing workforce and growing emotional demands call for more sustainable employment

People Turning in Gears - Synergy

As a result of the global demographic challenge of an ageing population and the increasing diversity of working life, there has been a growing focus on sustainable work over the life course which has also placed greater emphasis on the importance of the quality of work and working conditions. As more and more people are having to work longer before retirement, it is important that they are able to do so.

A recent Eurofound report examined working conditions and their implications for worker’s health. Its findings confirmed a clear link between working conditions and the health and well-being of workers, highlighting the need to make work more sustainable.

Working conditions, health and wellbeing

Eurofound’s report found that this relationship can be depicted in a model based on the European Working Conditions Survey (EWCS), showing that health outcomes are the result of two processes: health-impairing processes (exhaustion) and motivational processes (engagement).

Health-impairing processes are associated with exposure to adverse work demands which tend to increase exhaustion, while motivational processes are associated with access to work resources that support engagement.

Such demands can include:

  • physical risks
  • work intensity
  • work extensity (long working hours)
  • emotional demands
  • social demands

Such resources can include:

  • social resources
  • work resources
  • rewards

It is noted in the report that the demand and resources model partly explains how well-designed jobs – characterised by high rewards, high work and social resources and suitable levels of demands – translate into better health: “Whereas job demands are linked to higher levels of exhaustion (which, in turn, are related to poorer health), job resources are associated with higher levels of work engagement (which, in turn, are related to better health and well-being).”

It is therefore suggested that as job control, social resources and rewarding working experiences all have positive effects, employers should be encouraged to introduce initiatives that focus on motivational aspects of work.

As recently highlighted, the discipline of worker health has traditionally focused on worker exposures to various workplace hazards. However, this has more recently broadened to include the concept of worker well-being, which is seen as increasingly important. Not only is it important for the individual but it is an important determinant of productivity for enterprise and society as well. Indeed, the Eurofound report highlights this growing importance.

Emotional demands

While the report notes that physical hazards have a direct effect on worker’s health and wellbeing and are undoubtedly remain important, these have not increased, but emotional demands have. This, it is argued, underlines the growing importance of psychosocial risks. It argues:

“In the context of ageing societies and services-dominated economies, it becomes more pressing to address these risks as the incidence of exposure increases.”

Other research has also highlighted the significance of emotional demands at work in relation to health. One recent study in the Danish workforce, for example, found emotional demands at work predicted a higher risk of long term sickness absence.

With the growing need for long-term care in ageing societies, it is argued that these demands are likely to increase further and, therefore, require particular attention. Different groups of people also face varying demands and are considered in the report. In particular, gender differences are considered throughout – highlighted as significant in some areas

Gender

The report found that men tend to report better health and wellbeing, and fewer health problems and better sleep quality than women. Men were also found to report fewer days of sickness absence and fewer days of presenteeism.

This is consistent with other research findings that show ill-health is more prevalent in women. One study exploring the association between work-related stress in midlife and subsequent mortality, and whether sense of coherence (measured as meaningfulness, manageability and comprehensibility) modified the association, found that occupation-based high job strain was associated with higher mortality in the presence of a weak sense of coherence – a result that was stronger in women than in men.

The Eurofound report findings show that as women often work in sectors like health or education, they are especially exposed to the psychosocial risks associated with these emotionally demanding jobs.

The report also notes that workers under 25 are most likely to face high demands while having the least access to work resources, and health sector employees in particular, face high emotional and social demands. It is therefore suggested that there should be investment in working conditions for particular risk groups, such as occupations requiring lower skills levels, reporting job insecurity, or witnessing workplace downsizing. Measures to promote high union density, good employment protection and gender equality which are likely to improve working conditions and contribute to workers’ health and wellbeing are also highlighted.

Way forward

The findings of the Eurofound report, and indeed other research, highlight the need to look beyond the ‘traditional’, narrower framework of occupational health and safety to include the psychosocial risks such as emotional demands, along with motivational aspects of work. This calls for a reduction in health-impairing conditions and a fostering of health-promoting ones.

Of course, the world of work will continue to change, particularly in an increasingly digital world. However, striking the right balance between demands and resources through coordination between different policy fields could contribute to a higher quality of working life that is sustainable, regardless of the ever changing environment.


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An app a day … how m-health could revolutionise our engagement with the NHS

It seems like almost every day now we see in the news and read in newspapers about the increasing pressures on our NHS, strains on resources and the daily challenges facing already overworked GP staff.

Mobile health applications (m-health apps) are increasingly being integrated into practice and are now being used to perform some tasks which would have traditionally been performed by general practitioners (GPs), such as those involved in promoting health, preventing disease, diagnosis, treatment, monitoring, and signposting to other health and support services.

How m-health is transforming patient interactions with the NHS

In 2015 International Longevity Centre research found some distinct demographic divides on health information seeking behaviour. While 50% of those aged 25-34 preferred to receive health information online, only 15% of those aged 65 and over preferred the internet. The internet remained the favourite source of health information for all age groups younger than 55. And while not specifically referring to apps, the fact that many people in this research expressed a preference to seek health information online indicates that there is potential for wider use of effective, and NHS approved health apps.

A report published in 2019 by Reform highlighted the unique opportunity that m-health offered in the treatment and management of mental health conditions. The report found that in the short to medium-term, much of the potential of apps and m-health lies in relieving the pressure on frontline mental health services by giving practitioners more time to spend on direct patient care and providing new ways to deliver low-intensity, ongoing support. In the long-term, the report suggests, data-driven technologies could lead to more preventative and precise care by allowing for new types of data-collection and analysis to enhance understandings of mental health.

M-health, e-health and telecare are also potentially important tools in the delivery of rural care, particularly to those who are elderly or who live in remote parts of the UK. This enables them to submit relevant readings to a GP or hospital consultant without having to travel to see them in person and allowing them to receive updates, information and advice on their condition without having to travel to consult a doctor or nurse face-to-face. However, some have highlighted that this removal of personal contact could leave some patients feeling isolated, unable to ask questions and impact on the likelihood of carrying out treatment, particularly among older people, if they feel it has been prescribed by a “machine” and not a doctor.

Supporting people to take ownership of their own health

Research has suggested that wearable technologies, not just m-health apps, but across-the-board, including devices like “fitbits”, are acting as incentives to help people self-regulate and promote healthier activities such as more walking or drinking more water. One study found that different tracking and monitoring tools that collect and analyse health and wellness data over time can inform consumers of their baseline activity level, encourage personal engagement in health and wellbeing, and ultimately lead to positive behavioural change. Another report from the International Longevity Centre also highlights the potential impact of apps on preventative healthcare; promoting behaviour change and encouraging people to make healthier choices such as stopping smoking or reducing alcohol intake.

Home testing kits for conditions such as bowel cancer and remote sensors to monitor blood sugar levels in type 1 diabetics are also becoming more commonplace as methods to help people take control of monitoring their own health. Roll-outs of blood pressure and heart rhythm monitors enable doctors to see results through an integrated tablet, monitor a patient’s condition remotely, make suggestions on changes to medication or pass comments on to patients directly through an email or integrated chat system, without the patient having to attend a clinic in person.

Individual test kits from private sector firms, including “Monitor My Health” are now also increasingly available for people to purchase. People purchase and complete the kits, which usually include instructions on home blood testing for conditions like diabetes, high cholesterol and vitamin D deficiency. The collected samples are then returned via post, analysed in a laboratory and the results communicated to the patient via an app, with no information about the test stored on their personal medical records. While the app results will recommend if a trip to see a GP is necessary, there is no obligation on the part of the company involved or the patient to act on the results if they choose not to. The kits are aimed at “time-poor” people over the age of 16, who want to “take control of their own healthcare”, according to the kit’s creator, but some have suggested that instead of improving the patient journey by making testing more convenient, lack of regulation could dilute the quality of testing Removing the “human element”, they warn, particularly from initial diagnosis consultations, could lead to errors.

But what about privacy?

Patient-driven healthcare which is supported and facilitated by the use of e-health technologies and m-health apps is designed to support an increased level of information flow, transparency, customisation, collaboration and patient choice and responsibility-taking, as well as quantitative, predictive and preventive aspects for each user. However, it’s not all positive, and concerns are already being raised about the collection and storage of data, its use and the security of potentially very sensitive personal data.

Data theft or loss is one of the major security concerns when it comes to using m-health apps. However, another challenge is the unwitting sharing of data by users, which despite GDPR requirements can happen when people accept terms and conditions or cookie notices without fully reading or understanding the consequences for their data. Some apps, for example, collect and anonymise data to feed into further research or analytics about the use of the app or sell it on to third parties for use in advertising.

Final thoughts

The integration of mobile technologies and the internet into medical diagnosis and treatment has significant potential to improve the delivery of health and care across the UK, easing pressure on frontline staff and services and providing more efficient care, particularly for those people who are living with long-term conditions which require monitoring and management.

However, clinicians and researchers have been quick to emphasise that while there are significant benefits to both the doctor and the patient, care must be taken to ensure that the integrity and trust within the doctor-patient relationship is maintained, and that people are not forced into m-health approaches without feeling supported to use the technology properly and manage their conditions effectively. If training, support and confidence of users in the apps is not there, there is the potential for the roll-out of apps to have the opposite effect, and lead to more staff answering questions on using the technology than providing frontline care.


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Five blog posts that told the story of 2019

As the old year makes way for the new, it’s time to reflect on some of the topics we’ve been covering on The Knowledge Exchange blog over the past twelve months. We’ve published over 70 blog posts in 2019, covering everything from smart canals and perinatal mental health to digital prescribing and citizens’ assemblies. We can’t revisit them all, but here’s a quick look back at some of the stories that shaped our year.

Nick Youngson CC BY-SA 3.0 Alpha Stock Images

Tomorrow’s world today

Artificial Intelligence was once confined to the realms of science fiction and Hollywood movies, but it’s already beginning to have a very real impact on our personal and working lives. In February, we looked at the pioneering local authorities that are dipping a toe into the world of AI:

“In Hackney, the local council has been using AI to identify families that might benefit from additional support. The ‘Early Help Predictive System’ analyses data related to (among others) debt, domestic violence, anti-social behaviour, and school attendance, to build a profile of need for families. By taking this approach, the council believes they can intervene early and prevent the need for high cost support services.”

However, the post went on to highlight concerns about the future impact of AI on employment:

“PwC’s 2018 UK Economic Outlook suggests that 18% of public administration jobs could be lost over the next two decades. Although it’s likely many jobs will be automated, no one really knows how the job market will respond to greater AI, and whether the creation of new jobs will outnumber those lost.

Tackling violent crime

One of the most worrying trends in recent years has been the rise in violent crime. Figures released in January found overall violent crime in England and Wales had risen by 19% on the previous year.

As our blog reported in March, police forces around the country, along with health services, local government, education and the private sector have been paying close attention to the experience of Glasgow in tackling violent crime.

Glasgow’s Violence Reduction Unit (VRU) was launched in 2005, and from the start it set out to treat knife crime not just as a policing matter, but as a public health issue. In its first ten years, the VRU helped to halve the number of homicides in the city, with further progress in subsequent years.

In March, our blog explained that the VRU takes a holistic approach to its work:

“…staff from the VRU regularly go into schools and are in touch with youth organisations. They also provide key liaison individuals called “navigators” and provide additional training to people in the community, such as dentists, vets and hairdressers to help them spot and report signs of abuse or violence.”

 Protecting the blue planet

Environmental issues have always featured strongly in our blog, and in a year when people in larger numbers than ever have taken to the streets to demand greater action on climate change, we’ve reported on topics such as low emission zones, electric vehicles and deposit return schemes.

In August, we focused on the blue economy. The world’s oceans and seas are hugely important to the life of the planet, not least because they are home to an astonishing variety of biodiversity. In addition, they absorb large amounts of carbon dioxide emissions. But they are also a source of food, jobs and water – an estimated 3 billion people around the world rely on the seas and oceans for their livelihood.

Pollution is having a devastating impact on the world’s oceans, and, as our blog reported, governments are finally waking up to the need for action:

The first ever global conference on the sustainable blue economy was held last year. It concluded with hundreds of pledges to advance a sustainable blue economy, including 62 commitments related to: marine protection; plastics and waste management; maritime safety and security; fisheries development; financing; infrastructure; biodiversity and climate change; technical assistance and capacity building; private sector support; and partnerships. 

Sir Harry Burns
Image: Jason Kimmings

A sense of place

The ties that bind environmental factors, health and wellbeing are becoming increasingly clear. This was underlined at an international conference in June on the importance of place-based approaches to improving health and reducing inequalities.

One of the speakers was Sir Harry Burns, Director of Global Public Health at the University of Strathclyde. His research supports the idea that poverty is not the result of bad choices, but rather the absence of a sense of coherence and purpose that people need to make good choices:

“People who have a sense of purpose, control and self-esteem are more positive and secure about the places they live in, and a greater ability to make the right choices. Ask people to take control of their lives, build their trust, and people can make choices that support their health. We must create places that do that”.

Celebrating diversity

While it sometimes seems as if our society has made great strides in stamping out prejudice and supporting minority groups, at other times the stark reality of discrimination can shine a light on how far we still have to go.

In June, we marked Gypsy, Roma and Traveller (GRT) History Month with two blog posts that aimed to raise awareness of the many issues faced by GRT communities in the UK today:

“Research by Travellers Movement has found that four out of five (77%) of Gypsies, Roma and Travellers have experienced hate speech or a hate crime – ranging from regularly being subject to racist abuse in public to physical assaults. There is also evidence of discrimination against GRT individuals by the media, police, teachers, employers and other public services.”

But our blog also highlighted work being done to address these issues and to spread the word about GRT communities’ rich cultural heritage:

“Today, organisations and individuals such as The Traveller MovementFriends, Families and Travellers, and Scottish Traveller activist Davie Donaldson strive to promote awareness of and equality for the GRT community. The recent Tobar an Keir festival held by the Elphinstone Institute at Aberdeen University sought to illustrate traditional Traveller’s skills such as peg-making.”

 Back to the future

Since first launching in 2014, The Knowledge Exchange blog has published more than 700 posts, covering topics as varied as health and planning, education and digital, the arts, disabilities, work and transport.

The key issues of our times – climate change, Brexit and the economy haven’t been neglected by our blog, but we’ve looked at them in the context of specific topics such as air pollution, higher education and diversity and inclusion in the workplace.

As we head into a new year, the aims of The Knowledge Exchange blog remain: to raise awareness of issues, problems, solutions and research in public policy and practice.

We wish all our readers a very Happy Christmas, and a peaceful, prosperous and healthy 2020.

A long way from home: county lines, serious organised crime and exploitation in the UK

Gangs and serious organised crime groups are increasingly targeting vulnerable people, including children and young people to become involved in drug trafficking and other kinds of illegal activities. Police and local authorities assisted by third sector and charity partners are trying to stem the flow of vulnerable people leaving towns and cities and travelling elsewhere in the UK as part of a wider network of organised crime and exploitation. The aim is to break the chain of supply which is seeing organised crime move away from our inner cities to rural and coastal communities across the UK. From London to Liverpool, Glasgow to Cardiff, county lines practices have been growing, and solutions to prevent vulnerable people being targeted are needed urgently across the whole of the UK.

A growing emergency across the UK

Figures have shown a significant rise in the number of drug-related deaths across communities in the UK, with a significant rise in deaths among young people and among those in rural communities. While drug problems are widely considered an urban, inner-city issue, increasingly communities in rural and coastal areas are struggling with drug-related crime and deaths as new markets and channels for moving drugs across the country are opened up by organised crime groups and gangs.

Research has shown that, unlike in previous decades, these are not just the result of social, ad hoc sharing and transporting of drugs, but strategic and coordinated networks designed specifically to open new markets for drugs beyond city centres and expose more communities to markets of illicit materials, including drugs. The National Crime Agency (NCA) reports that the main driver of this “county lines” practice is fundamentally the demand and supply of controlled substances within the UK and the opportunity of “new” drug markets to make significant amounts of money. Analysis from the NCA indicates that an individual line can make profits in excess of £80,000 per year and can make thousands of pounds of profit from one single trip.

An easy target

One of the defining features now recognised as a key part of county lines drug trafficking is the exploitation of vulnerable and socially excluded people.This offers a degree of safety for those at the top of the network who avoid getting their hands dirty by delegating work to those further down the chain. Vulnerable groups, such as the homeless, care leavers or young people from disadvantaged backgrounds, are identified by county lines groups both as a target market for the drugs trade and for “recruitment”, involving them in the storage, transportation or selling of drugs in these new sites. This means that, on the whole, these groups are being disproportionately impacted. Many often don’t see themselves as victims or realise they have been groomed to get involved in criminality. Commentators and practitioners have stressed that an urgent and powerful response to safeguard these groups is needed.

A 2017 report from the Children’s Commissioner estimates there are at least 46,000 children in England who are involved in gang activity. It is estimated that around 4,000 teenagers in London alone are being exploited through child criminal exploitation or ‘county lines’. In March 2018, the Children’s Society published the second edition of Criminal exploitation and County Lines: A toolkit for working with children and young people. It summarised the risks to children and young people who become involved in county lines as including:

  • physical injuries: risk of serious violence and death
  • emotional and psychological trauma
  • sexual violence: sexual assault, rape, indecent images being taken and shared as part of initiation/revenge/punishment, internally inserting drugs
  • debt bondage – young people and families being ‘in debt’ to the exploiters; which is used to control the young person
  • neglect and basic needs not being met
  • living in unclean, dangerous and/or unhygienic environments
  • tiredness and sleep deprivation: the child is expected to carry out criminal activities over long periods and through the night
  • poor attendance and/or attainment at school/college/university

These challenges are also faced by other groups of vulnerable adults who are targeted in the same way. But while vulnerable children are subject to a compulsory referral process in relation to suspected exploitation, adults must consent to being referred, which research has suggested may be impacting the reported numbers of victims. This in turn indicates that the true number of vulnerable adults being exploited may be significantly higher.

Tackling county lines by working together

Partnership working between services which come into contact both with the county lines gangs and with the vulnerable people they exploit has been shown to be critical to facilitating an effective response and halting the spread and further development of county lines networks. However, it has also been highlighted that traditional approaches and mechanisms used to identify and safeguard vulnerable groups, particularly children, are no longer sufficient in the context of county lines child criminal exploitation (CCE), and that new guidance is needed to support practitioners in this field.

In September 2018 the National County Lines Coordination Centre was launched to crack down on drug gangs. The multi-agency team of experts from the National Crime Agency (NCA), police officers and regional organised crime units are working together, along with other partners in local areas, to build a national picture of the complexity and scale of the threat.

At a local level, pilot projects in several London boroughs, including Hackney, Islington and Lambeth and in other trial areas outside of London, such as Kent and Merseyside, have taken place. Evidence has shown that frontline services across the board play a key role in helping to identify and support those people at risk of exploitation from county lines gangs – not just police and prison service staff – but healthcare workers, social workers, teachers and youth work professionals from the public and third sectors. Working together as multi-agency partnerships, while challenging, results in the best outcomes and opportunities for intervention and support for children and vulnerable people who are at risk. It is essential that staff receive a high standard of training and that they themselves are given the time and resources needed to try and forge effective partnerships which in turn will help to identify and intervene with those at risk of gang exploitation more effectively and at an earlier stage.

Partnerships which include opportunities for staff training and guidance from third sector specialists like St Giles Trust and Safer London make use of the significant knowledge and experience held within the third sector and help local authorities to apply these to their own statutory responses. They also encourage the sharing of effective practice and knowledge on tackling exploitation across the whole of the UK, which is helping to create a more effective and joined-up approach to tackling child exploitation and the links to county lines practices. Maintaining this sharing of knowledge and skills across different sectors and professions will continue to be vital in helping to develop practice and responses that can react more effectively to exploitation in the future.

Providing a safe place and a route forward for victims of county lines exploitation

In a county lines context, better safeguarding and early intervention practices with vulnerable people serves a dual purpose: preventing the person involved being exploited and engaging in criminal activity; and disrupting the county lines operation, and subsequently the flow of illicit materials into our communities. The networks are, by their own design, elusive and hard to trace. Those involved are threatened and often trapped in roles within the network which they would otherwise be unable to escape on their own. Providing a safe space for these exploited people is an important first step in the process of tackling county lines and organised criminal networks.

Local authorities are working closely with partners to try and provide this support at a local and very personal level while trying to fit into the wider strategic process of the national response to county lines. These national and local responses are both vital in tackling county lines and the exploitation that comes with it.


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‘Digital prescribing’ – could tech provide the solution to loneliness in older people?

Notruf und Hilfe für Rentner und Kranke

The number of over-50s experiencing loneliness could reach two million by 2026. This compares to around 1.4 million in 2016/7 – a 49% increase in 10 years.

It has also been estimated that around 1.5 million people aged 50 and over are ‘chronically lonely.’

With an ageing population and increasing life expectancy, it would seem likely that loneliness among older people is set to continue; unless something significant is done. According to Age UK, tackling loneliness requires more than social activities. A new report from Vodafone suggests technology could be the answer.

Impact

The impact of loneliness in older people can be immense, not only for the older people themselves but for those around them. It can also put strain on the NHS, employers and organisations providing support to people who are lonely; and have a negative impact on growth and living standards.

Research has suggested that those experiencing social isolation and loneliness are at increased risk of developing health conditions such as dementia and depression, as well as increased risk of mortality. The damaging health effect of loneliness has been shown to be comparable to smoking 15 cigarettes a day. Older people who are lonely are therefore more likely to use health services than those who are never lonely.

The economic impact is also significant. It has been estimated that increases in service usage create a cost to the public sector of an average £12,000 per person over the medium term (15 years). Vodafone’s report suggests that loneliness has a £1 billion a year impact on public services. It has also been found to cost employers £2.5 billion per year.

How tech can ease the burden

According to Vodafone, “new technologies are a key part of the solution” alongside more traditional public and community services. Two key routes through which technology can be used to reduce loneliness are highlighted:

  • by supporting older people to remain independent in their home and community; and
  • maintaining and building networks and contacts.

From wearable devices and touchscreens to personal robots that act as the eyes, ears and voice of people unable to present physically, these are all highlighted as viable and positive uses of tech to ease the burden of loneliness. And there are already a number of examples of innovative use of technology that can benefit older people.

1024px-AV1

No Isolation AV1 robot. Image by Mats Hartvig Abrahamsen, via CC BY-SA 4.0

Good practice examples

One such example is Vodafone’s smart wearable wristband, the V-SOS Band, which supports independent living while also increasing the wearer’s safety. It can directly alert family members via their phone if the wearer needs help. It also uses fall detection technology so that families can be alerted automatically if the wearer falls either in the home or when they are out.

Kraydel is another example. Its smart TV-top hub links elderly people to their carers or family members, through their TV screens, helping people be more independent and remain in their own homes for longer as well as helping them be more socially connected. It provides for user-friendly video calling via the TV and can help people return home from hospital earlier. Via connection to the cloud, the device interprets the data it receives to build up a picture of the user’s daily activities, health and wellbeing. It issues medicine and diary reminders, and alerts caregivers if it sees something amiss, or identifies potential risk.

Although aimed at children, No Isolation’s AV1 – a smart robot designed to reduce the risks of children and young adults with long-term illness becoming socially isolated – demonstrates the positive impact innovative technology can have on social isolation and loneliness. The robot avatar, with its 360 degree camera, acts as the child’s eyes, ears and voice in the classroom or at other events, keeping children closely involved with school and in touch with their friends.

Of course, loneliness is particularly prevalent among people who don’t use smart technology such as smart phones and tablets, one of the reasons cited by Kraydel for using the TV – probably the most familiar and widely used screen globally. This issue also led No Isolation to develop KOMP, a communication device for seniors that requires no prior digital skills. It enables users to receive photos, messages and video calls from their children and grandchildren, operated by one single button.

Another new project recently launched in Sweden – considered one of the world’s loneliest countries – uses a unique conversational artificial intelligence which enables older people to capture life stories for future generations while providing companionship. Memory Lane works with Google Voice Assistant and is able to hold meaningful conversations in as human a way as possible. A pilot test showed that the software “instantly sparked intimate conversations” and led to stories that hadn’t been told before.

Final thoughts

With a significant number of older people lacking confidence in their ability to use technology for essential online activities, support for digital skills is obviously still important. In response to this issue, Vodafone has launched free masterclasses across the UK, as part of a programme called TechConnect.

Many of the above innovative examples bypass the traditional barriers to realising the potential of technology in reducing loneliness as most:

  • don’t rely on older people engaging directly with the technology; and
  • are based on mobile technology that can be constantly connected, whether inside or outside the home.

However, there is still the issue of awareness of such technologies and their accessibility to older people. The Vodafone report suggests that access could be improved through social and digital prescribing and revitalising support for independent living, and calls for a challenge fund to support innovation. It is suggested that these innovative ideas are just the start and that combined action is needed from across all levels of government, business and community groups, amongst others.

Perhaps if such action is taken to address existing barriers, we will see a reverse in the loneliness trend over the next 10 years.


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Guest post: Some countries have introduced mandatory nutritional labelling on menus – here’s why the UK should follow suit

Olga_Moroz/Shutterstock

 

Guest post by: Dolly Theis, University of Cambridge

Would you eat a burger if you knew it contained almost 6,000 calories? Some would gladly tuck in while others would recoil in horror. But if you have calories on the menu, at least you know what you’re biting into. And as our latest research shows, menu labelling, as it is called, may be a powerful way to change the nation’s eating habits.

Research shows that the British public is increasingly eating out and ordering takeaways, rather than preparing food at home. Our earlier research estimates that a quarter of UK adults and a fifth of children eat at a restaurant or order a takeaway at least once a week. Food that isn’t prepared at home tends to be less healthy, more calorific and higher in fat, sugar and salt than food prepared at home. While eating out is a triumph for a large and important commercial sector, it is also contributing to the obesity crisis and the increase in diseases such as type 2 diabetes and cancer.

Still not mandatory

Unlike nutrition labelling on pre-packaged food, which has been around for years and mandated under EU law since 2016, menu labelling is still not mandated in the UK. The government included voluntary menu labelling in its Public Health Responsibility Deal in 2011, and several establishments have since introduced menu labelling.

Of the top 100 chain restaurants in the UK, we recently found that 42 publish nutritional information on their websites, and of these, 14 voluntarily provide menu labelling in their establishments. A proposal for mandated menu labelling was included in the UK government’s Childhood Obesity Plan, and a public consultation closed last December, but no announcement on a final policy has been made so far.

Mandatory menu labelling has been introduced in other countries, including the US in 2019 and parts of Australia.

Calories explained.

Labelled menus mean healthier food

We found that food and drink sold at the top largest UK chain restaurants whose menus display energy information are lower in fat and salt than those of their competitors.

Menu labelling has often been touted as a way to provide information that helps people choose healthier dishes, but several reviews, including a recent Cochrane review, found only modest, poor quality evidence of an effect of menu labelling on purchasing and consumption. Our evidence suggests that the benefit of menu labelling may not necessarily be in helping consumers make healthier choices, but in incentivising restaurants to serve healthier food and drink. Without nutritional information, it is difficult to know where improvements are needed.

Nutritional information is only helpful if it is accurate. A 2018 study on the views of Irish food-service businesses towards voluntary menu labelling found that key barriers to implementing it included concerns about potential inaccuracies in calorie information and the lack of training on how best to provide quality calorie information.

If food outlets are mandated to provide menu labelling, they will need greater support and training to do so. But it may also increase the demand for more accurate, efficient and accessible methods of data collection (typically laboratory or electronic database analysis), promising easier ways to account for the nutritional quality of what’s on restaurant menus.

Should nanny stay at home?

Mandatory labelling will not be popular in all corners. After all, who doesn’t enjoy blowing out at the occasional all-you-can-eat buffet? The challenge is that eating out is not occasional anymore. It is has become habitual.

Fortunately, as we increasingly ditch the kitchen for the restaurant and takeaway, government has found that there is strong public support for menu labelling. Through the Childhood Obesity Plan, the government is exploring many ways to help make it easier for us all to make healthier choices and menu labelling should be considered as one of many policies, not as a silver bullet.

The 6,000-calorie burger is an extreme example. But think about it, when you last ate out, did you know how many calories you were consuming?The Conversation

Dolly Theis, PhD Candidate, University of Cambridge

This article is republished from The Conversation under a Creative Commons licence. Read the original article.


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