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Mary Jordan reviews ‘When the Time Comes’

Book review by Mary Jordan, author of ‘The Essential Carer’s Guide’ and ‘The Essential Carer’s Guide to Dementia’, of ‘When the Time Comes: Stories from the end of life‘ by Dr Magnolia Cardona and Nurse Ebony Lewis. 

This is a very thought-provoking book. It is a collection of short stories about actual experiences of dying and end of life care. Because each story is told by a different individual we hear from many viewpoints and cultures but the emotion which comes most often to mind is the general feeling of dissatisfaction experienced with standard medical attention at end of life.

Mostly the people relating these accounts to do not blame those medical professionals concerned at the end of these lives. But they do wish generally that things could be managed better. One of the problems in our civilisation is that hospitals and doctors are not seen as helping to make death a more comfortable experience. Doctors and hospitals are concerned with curing illness and bringing people back to health and this means that many of us at end of life get carried along by the medical path that is concerned with ‘trying one more treatment’ or tackling one more crisis. For example, we are told about a patient who is ‘ready to go’ but who continues to ‘endure the efforts of a health system determined to do all they can to keep him here’.

What we seldom have at this stage is the time to take a step back and consider the options.

Ideally this thinking would be done before the crisis arises and indeed this book advocates thinking ahead and giving time to planning our own end of life as well as helping our loved ones to do the same. Each account in the book ends with a few questions which can form the basis of considering end of life, looking at many different practical and ethical points.

I would perhaps like to have seen a little more room given in the stories to people who are not yet ‘ready to go’ and who do want every effort to be made to keep them in this life but over all that is not what the book is meant to be about. The points about having a good quality end of life experience and about communicating your wishes in this respect to those around us are very well made.

This is a book well worth reading and using as a discussion focus with those you love best.

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Ten Things We Want People to Know About Dying Well

Blog post written by Dr Magnolia Cardona and Nurse Ebony Lewis, authors of When the Time Comes: Stories from the end of life. Launches 25th March. 

 

Receiving a diagnosis of an irreversible progressive disease can be confronting and intimidating. On the other hand it gives us opportunities to prepare for the end of life in a way that can be a fulfilling activity that helps us tie the loose ends – not a morbid duty we should avoid. We have witnessed people of advanced age with chronic disease and their families facing the dilemma of deciding between life support and resuscitation in their last days of life without sufficient preparation for it. Wouldn’t it be better to have had time for that conversation with significant others much earlier, at home over a cup of tea rather than in the emergency room?

 

The following is a list of lessons learnt from clinicians and patients, from years of research and clinical experience:

  1. Older people today are more willing and able to discuss preference for place of death and to participate in treatment decisions than they used to be a couple of decades ago
  2. Cancer is not the only life-threatening illness of old age: chronic lung disease, kidney failure, heart failure and dementia are other examples less recognised by the public
  3. Talking about treatment wishes and personal values with our families and doctors should happen as early as possible, not only after receiving a diagnosis of chronic irreversible or life-threatening illness
  4. Just as we prepare celebrations for life events we should be in control of our preparation for death if we can help it
  5. Living life to the fullest can be followed by a good death if we prepare by talking to others about our wishes and objections towards the end
  6. An advance health directive is not a death-sentence but a passport, with clear instructions on our wishes, which can be renewed periodically so others don’t have to guess our treatment preferences before our final trip
  7. Families’ requests for use of medical technology, such as intensive care, should be made only if it prevents suffering and provides benefit, not just to prolong life
  8. A palliative care referral is an early admission to a pathway that prevents unnecessary pain and physical suffering; we should take it if it is offered
  9. Hospices are not places where patients are abandoned, but places where loving specialists help dying people experience a dignifying transition
  10. By normalising the end-of-life discussion we will be helping doctors make decisions aligned with our wishes and be removing the burden from our families having to choose for us.

 

In our book When the Time Comes, we have compiled short stories from real-life to illustrate when the discussion of values and preferences has prevented suffering or guilt, and when the absence of an end-of-life conversation has led to excessive and futile treatment. We invite readers to reflect on the different scenarios and to be ready, no matter their age or state of health. Useful lessons can be learned from the circumstances and motivation of people in the stories who have shared their experience to help others prepare.

 

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An Attempt to Prevent the Death of an Old Woman

A poem by Glenn Colquhoun, author of Playing God – poems about medicine

 

Old woman, don’t go, don’t

go outside into dark weather

Out into the night’s wet throat

There is cooking on your stove

Old woman, don’t go.

 

Don’t go old woman, don’t go

Down beneath that deep sea

Down onto its soft bed

There are still fish to be caught

Old woman, don’t go.

 

Don’t go old woman, don’t go

Bent into that slippery wind

Listening for its clean voice

There are songs still left to sing

Old woman, don’t go.

 

Don’t go old woman, don’t go

Walking beside that steep cliff

Watching where the sea flowers

There are daisies on your lawn

Old woman, don’t go.

 

Don’t go old woman, don’t go

Lifting in those strange arms

Caught against that dark chest

There are people left to hold

Don’t go, old woman, don’t go.

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Trying to provide the best environment for someone with dementia in the present crisis: the three ‘Ss’

Dementia

It’s a difficult time for all of us – and particularly so for anyone with dementia. We are all being urged to stay at home and people in care homes are no longer allowed even to see visitors. How can those of us caring for people with dementia provide an environment that gives them the best experience in these circumstances?

First, it is important that the environment is supportive. Life does not always run smoothly and those of us who still have plentiful cognitive reserves learn to cope with that fact. We can acknowledge the need to limit our social contacts and our outings in the present circumstances. We can accept that we may feel anxious, bored and annoyed and we all hope to ‘come out the other side’ when life resumes its normal path.. Someone who has little cognitive reserve, for whom even following a routine is difficult, will find any change or complication doubly difficult. People with dementia need support. They need support from those around them and it is doubly important that those they rely on for support continue to give calm and consistent care.

As much as possible carers should keep to the habitual routine. There is no need to force the person with dementia to stay indoors, for example. If the rest of us are allowed outdoor exercise then so are they. ‘Social distancing’ can easily be maintained simply by walking in quieter areas or gently directing the person you care for in the right direction.

Secondly, the environment should feel safe. Note that I am not saying here that the environment should be safe but that it should feel safe to the person with dementia. Naturally, we should aim for a clean home environment – but becoming over-protective about touching surfaces or cleaning areas is not going to help someone with dementia to feel more safe and secure. It is more likely to cause extra stress as they cannot understand the need for such precautions. And bear in mind that most people with dementia confronted with a person wearing a mask and gloves are likely to feel terrified rather than safe.

Thirdly, the preferred environment for people with dementia should be stimulating to the senses and provide an opportunity for social interaction. Now that day centres and dementia cafes have been forced to close many carers are finding it quite challenging to provide activities for people with dementia and even more challenging to provide social interaction.

The fact is that without stimulation any of us may become bored and doze off. How often has this happened to you whilst watching a boring TV programme? People with dementia are frequently bored because many of the occupations with which they passed the time previously are now closed to them. Boredom can lead to difficult behaviour and restlessness, but often it just results in sleepiness. Simple tasks can be enjoyed – think sorting books by size, pairing socks, ‘tidying’ shelves, dusting and polishing. And remember that an impaired memory can be an advantage. If you ask someone to dust a piece of furniture more than once they are unlikely to remember that they have just completed the task. Outdoor jobs like watering plants, raking up leaves, and carrying trimmings to the compost heap combine fresh air and exercise as well as passing the time and ‘tidying the shed’ can occupy a good few hours even if the result doesn’t live up to the job description! Watching visitors to a bird table can be absorbing and this can be done through a window if the weather is not so good.

Providing social interaction is more challenging. Today we are being urged to use technology and social media to keep in touch with others but this is not an acceptable alternative for people with dementia who progressively lose the ability to work even simple devices such as a remote control. Many people with a cognitive difficulty will also be unable to associate screen pictures with the ‘real thing’ and may even find them frightening.

Telephone calls are often still acceptable as this is a method of communication that is still familiar so ask your relatives and friends to use the telephone to make contact.

You can also talk to neighbours ‘over the fence’ or whilst keeping an acceptable distance on a walk. Carers from care agencies are still allowed to visit to provide personal care or companionship if this is necessary so don’t cancel your regular care and remember to give them tips about chatting to the one you care for.

Blog post written by Mary Jordan, author of The Essential Carer’s Guide to Dementia

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Trick and Treat: How healthy eating is making us ill

Trick and treat: how healthy eating is making us ill

Every year the amount of money the Chancellor gives to the UK’s National Health Service goes up and so do our taxes to provide for it. And every year we hear more and more complaints about falling levels of service, lengthening waiting times for treatment, and worsening levels of hospital-borne diseases. With the billions of pounds we pump into the NHS each year, have you ever wondered why we don’t get a better service? The reason seems to be because we do pump billions of pounds into the NHS every year. Continue reading Trick and Treat: How healthy eating is making us ill

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A gentle introduction to IBS for IBS Awareness Month

Irritable Bowel Syndrome

Irritable bowel syndrome (IBS) is an invisible, fluctuating disease and as such it is often difficult for family members, friends, colleagues, health service professionals, welfare insurance administrators and others who encounter people with the disease to understand the suffering of the individual.

People with IBS are often faced with troublesome and sometimes severe physical symptoms that in different ways obstruct or challenge their everyday life. The disease is by its nature potentially shameful. In our modern western society some of our most fundamental bodily functions, like flatulence and defecation, are considered to be private and nothing you would want others to know about. Hence, for many persons with IBS, sharing their illness experience does not come easily.

Among healthcare professionals, knowledge about IBS is quite often insufficient and it is regarded as a low-priority disease. Sometimes IBS patients find that their troubles are dismissed or belittled, for example, in healthcare encounters or by family members. Not being taken seriously – at home or by healthcare professionals – can be a devastating experience which affects self-image. For some people getting the diagnosis is affirming, providing a legitimate passport to the healthcare system. For others, however, being diagnosed means nothing but being a ‘closed-case’, and they feel left with insufficient information, advice and support. They find they have more questions than answers. In the jungle of potential self-management suggestions (available through various websites, blogs and chat forums) about what to eat, when to sleep or how to behave if you get urgent bowel movements and start to panic on the bus, it is easy to get confused. Being on your own, having to figure out how to live the rest of your life with an illness that won’t go away, and a disease for which there is no treatment or clear and certain ‘rules’ to follow but learning to know one’s own body and what works best, is not an easy task.

Literature about IBS has until now tended to be either too medically orientated, complex and difficult for lay people to understand, or to be like a pamphlet, too brief to be useful. Irritable Bowel Syndrome is therefore a very much welcomed contribution for all laypersons – people with IBS, family members, colleagues, neighbours and others who for some reason need to learn more about the disease, what life with IBS is about and what help is out there. The book offers a thorough explanation of the mechanisms and (as far as there is scientific evidence) likely causes of IBS, and of available pharmacological and non-pharmacological treatment options. It also portrays life with the illness from the perspective of those who live with the disease, and linked to this, a variety of self-care strategies are described. The book can of course be read as a whole, but it also forms a very useful reference book for certain aspects or topics of particular interest to the reader. I am certain that anyone who is interested in knowing more, or has specific questions, about IBS will find useful information and answers to their questions.

Cecilia Håkanson RN, PhD is a researcher and senior lecturer at the Palliative Research Centre and the Department of Health Care Sciences at Ersta Sköndal Bräcke University College, Stockholm, Sweden. She is also an affiliated researcher at Karolinska Institutet, Department of Neurobiology, Care Science and Society, in Stockholm, Sweden.

This extract is taken from Irritable Bowel Syndrome: Navigating your way to recovery By Dr Megan Arroll and Professor Christine Dancey

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Self Injury Awareness: Getting to know the ‘Self-Defeatist Gremlin’

Understanding ‘Self-Defeatist Syndrome’

A person whose head is bowed and whose eyes are heavy cannot look at the light.

Christine de Pizan

What I will term ‘self-defeatist syndrome’ is the uninvited Gremlin that moves into young minds, metaphorically speaking. The Gremlin is STRESS that leads to DISTRESS, an unruly tenant that is powerful, deceitful and controlling. Its ultimate goal is to take control of a teenager’s life in a destructive manner causing him/her to feel alone, depressed, angry, afraid, hopeless and anxious. The Gremlin’s goal is to isolate the teenager from family and friends, thus making itself even more powerful. It wants to make the teenager feel lonely and powerless, surrendering to the darkness, diminishing his/her light and self-esteem, distorting his/her belief system and sense of self.

The sense of self

The ‘self’ relates to our uniqueness and individuality, our thoughts, feelings, perceptions and sense of worth, and how we view ourselves. The self also relates to our sense of identity, our belief system and values.

A teenager with a healthy sense of self will:

  • feel confident and competent
  • feel a sense of belonging and acceptance
  • feel secure, safe and valued
  • have self-discipline and self-control
  • learn from and move on from mistakes with new awareness
  • value his/her strengths and accept his/her weaknesses
  • have a healthy set of core values

These are all the traits that the gremlin of self-defeatist syndrome despises and wants to eliminate. The Gremlin does not want the teenager to have a healthy sense of self; a healthy sense of self is its enemy. Its wish and desire is for the teenager to have a defeatist view of him/herself. In achieving this, the Gremlin has accomplished its objective and is actively compromising the wellbeing of teenagers, who are not strong enough to evict the Gremlin on their own.

The defeatist attitude

The ‘defeatist attitude’ refers to an attitude or view of oneself which is negative, pessimistic and unforgiving. A teenager with a defeatist view of him/herself will present with low self-esteem and a noticeable and ongoing lack of motivation, generally deriving little pleasure from life, with a distinct lack of belief in his/her abilities. This is a clear sign that the Gremlin has moved in and taken the teenager hostage. Teenagers in this situation will often use phrases like:

  • What’s the point?
  • It won’t work for me
  • They would all be better off without me
  • It’s just one thing after another
  • I couldn’t be bothered
  • I can’t manage this anymore
  • I am no good
  • No one cares about me
  • I can’t do it

Syndrome

A ‘syndrome’ refers to a combination of signs and symptoms that are indicative of a particular condition. A teenager in midst of self-defeatist syndrome will generally present with:

  • Low energy
  • Low self-esteem
  • Depression
  • Anxiety
  • Anger
  • Self-harming
  • Suicidal ideation (thinking)

Low energy

A teenager can experience low energy for a number of reasons. Adolescence is a period marked by a rapid increase in physical and emotional development. Puberty, hormonal changes and the soaring growth of bones and muscles can have a temporary effect on energy levels, causing many teenagers to feel fatigued from time to time; this is totally normal and to be expected. However, if low energy persists and negatively effects the quality of life of a teenager, a detailed and comprehensive medical investigation is warranted and strongly advised. A full medical investigation should uncover any organic reasons for fatigue and low energy; then, the right treatment can get a teenager’s energy levels back on track and prevent the onset of self-defeatist syndrome.

Common organic reasons for low energy uncovered through a medical investigation in teenagers include:

  • Infection
  • Virus
  • Iron-deficiency anaemia
  • Low thyroid function
  • Vitamin B and C deficiencies
  • Allergies

Harder to diagnose, and more unusual in younger people, are underactive thyroid (hypothyroidism) and pernicious anaemia/vitamin B12 deficiency.

If after a full medical investigation no organic causes for low energy and fatigue can be detected, then lifestyle needs to be further scrutinised and addressed as the Gremlin may be actively trying to move in.

Please share this blog to raise awareness of Self Injury Awareness Day (SIAD).

This blog has been adapted from Overcoming Self-harm and Suicidal Thoughts: A Practical Guide for the Adolescent Years by Liz Quish.

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The Myth of Somatization

The Myth iof Somatization

Symptoms and signs

During any consultation, the patient and practitioner seek to bridge a gulf of subjective meaning. The events the patient notices and tries to describe are ‘symptoms’; the doctor, meanwhile, is also looking for ‘signs’—usually described as ‘objective indications’ of disease or disorder. In some cases, the disease is readily identifiable (say, jaundice) because the signs are evident.

Somatization,  functional illness and hypochondriasis

However, where the practitioner favors signs to the exclusion of symptoms, problems can arise. In the absence of readily observable signs, due diligence and medico-legal concerns usually mean that the patient will be referred on to one or more specialists for further consultations and tests. Where no pathology is identified, the patient is at risk of being stigmatized as ‘somatizing’, suffering from ‘psychosomatic’, ‘somatoform’ or ‘conversion’ disorder, ‘functional illness’, or ‘hypochondriasis’.

None of these nominalized terms is particularly helpful, because none of them provides insight into the problem. Moreover, they tend to exclude the patient’s experience, the context within which his problem arises. Patients are quick to detect the underlying suggestion that what is ailing them is ‘all in the mind’. If they do not medicate the patient, many doctors are quick to outsource the problem to psychologists, psychiatrists, or counselors (where available), reinforcing the picture of troublesome neurotics wasting the medical profession’s valuable time.

The Medical NLP approach

Medical NLP regards ‘somatization’, with its overtones of neuroticism, as a fiction. Not only do imbalances within the body–mind system express themselves somatically, both as some kind of physical felt sense and in changes in cellular function or structure, but we cannot have any experience without some physical movement or manifestation.

As ‘open adaptive systems’, we humans are constantly processing billions of bits of data, both exteroceptive (from outside the body) and enteroceptive (from within), most of which are filtered out of our conscious awareness. When these processes pass a certain threshold, they come into the subject’s awareness as somatic events, which are then subjected to descriptions, inferences, and evaluations, by both the ‘experts’ reviewing the condition and the patient suffering from its effects.

Diagnosis is not the disease

However, we should not confuse the descriptions and inferences we use as convenient forms of classification with the event itself. The diagnosis is not the disease. The symptom is not the problem. The problem is the problem, and the symptom is the signal that the problem has not yet been recognized and resolved.

For more insight into bridging the gap between patient and practitioner using Medical NLP visit The Society of Medical NLP website and read Garner Thomson’s Magic in Practice: The Art and Science of Language in Healing and Health available as ebook and paperback.

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Longer GP visits will save the NHS money

Both the British Medical Association and Glasgow researchers have reinforced the Society of Medical NLP’s claims that longer sessions for patients visiting a GP will save the NHS money.

In Magic in Practice (London:Hammersmith), the authors, Garner Thomson and Khalid Khan, point out that patients who were allowed to express their “uninterrupted story” to a doctor who was trained to address the context of the complaint as well as the content would dramatically reduce the number of visits required to resolve the issue.

Four GP practices in Glasgow offered  patients with complex chronic conditions (of the kind specifically addressed by Medical NLP) consultations lasting 30 minutes or more. Not only was the condition diagnosed, but personal problems were dealt with and care plan devised and suitable goals negotiated with the patient – similar to the “Ko Mei” format of Medical NLP.

The result was a measurable drop in “negative wellbeing” and a significant increase in quality of life.

The results are published here in the journal BMC Medicine.

The BMA has also called for the rigid 10-minute timetables to be replaced with a more a flexible system enabling doctors to spend more time with patients with more complex needs.

To learn more about Medical NLP read Magic In Practice: Introducing Medical NLP by Garner Thomson with Dr Khalid Khan, and let us know what you think about saving the NHS @HHealthBooks on twitter.

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Eat, drink and be merry: a recipe for…health?

The enforced closeness of the holiday season can have an all-too-familiar downside. Some of the most wrenching fall-outs among nearest and dearest tend to occur over Christmas and the New Year.

But, before you think about escaping the mandatory get-togethers and making yourself permanently unavailable to family and friends, think about this – they may just be keeping you alive.

This is the opinion of the authors of a paradigm-shifting new book on the importance of closeness and communication to human health and wellbeing. According to Garner Thomson and Khalid Khan, authors of Magic in Practice – Introducing Medical NLP, the Art and Science of Language in Healing and Health, a strong connection with both family and friends is a better predictor of health and longevity than doing all the ‘right’ things, such as quitting smoking, eating your five a day, and getting plenty of sleep.

They point to a landmark study, started in the 1940s, and still the subject of intensive research.

Scientists were intrigued by strikingly low rates of myocardial infarction reported from the little Pennsylvanian town of Roseto, where they expected to find a fit, tobacco- and alcohol-free community enjoying all the benefits of clean-living. When they arrived, they found as many smokers, drinkers and couch potatoes as in the rest of the country, where heart disease was on the rise.

The difference between Roseto and other similar towns, the researchers discovered, was a particularly cohesive social structure.

“The inhabitants of the little town were unique in the experience of the scientists who were drawn there,” says Garner Thomson. “They could be described as ‘barn-raisers’ – which is to say if someone’s barn burned down, everybody in the town turned out to rebuild it. Somehow, the closeness Rosetans enjoyed inoculated them against cardiac and other problems

“Clearly this premise had to be tested – and time was the only true test. The scientists reasoned that if the society changed, became less cohesive and more like its neighbouring towns and cities, the effect would eventually disappear.

“Sadly, as the community became steadily more ‘Americanised’, this proved to be true.”

The 50-year longitudinal study, published in 1992, categorically established that social support and connectedness had provided a powerfully salutogenic (health-promoting) effect on the heart.[1]

Nor was this a random fluctuation affecting a small, isolated community, the authors say.

A number of studies have since confirmed that host resistance to a wide range of illnesses is affected by the social context in which you live and the support you feel you receive. A recent study of 2,264 women diagnosed with breast cancer concluded that those without strong social bonds were up to 61% more likely to die within three years of diagnosis.

According to Dr Candyce Kroenke, lead researcher at the Kaiser Permanente Research Centre, California, the risk of death equals well-established risk factors, including smoking and alcohol consumption, and exceeds the influence of other risk factors such as physical inactivity and obesity.[2]

At least two major studies have suggested that loneliness can double the risk of elderly people developing Alzheimer-like diseases.

“What is particularly interesting about these studies is the suggestion that it is feelings of loneliness, rather than social isolation itself, that may cause the corrosive effects of dementia and other problems,” Thomson says. [3],[4]

Key factors in social integration have been identified as having someone to confide in, help with financial issues and offer practical support, such as baby-sitting, when you need it, and with whom you can discuss problems and share solutions.[5] “These are what we call ‘3 am friends,” says Thomson, “people we can call for support at any hour, no matter how early, and know they will always have time for us.”

So, before you decide to celebrate the holiday season away from Aunty Elsie and Uncle Edward, think very carefully about the possible consequences. Some of the other established benefits of social support and connectedness include: extended lifespan (double that of people with low social ties)[6]; improved recovery from heart attack (three times better for those with high social ties)[7]; reduced progression from HIV to Aids [8] and, even protection from the common cold.[9]

Magic in Practice – Introducing Medical NLP, the Art and Science of Language in Healing and Health is available as paperback or eBook from £6.99. Enter coupon code Xmas15 at checkout for a 15% discount on your basket.

 

 

 

[1] Egolf B, Lasker J, Wolf S, Potvin L (1992) The Roseto effect: a 50-year comparison of mortality rates. American Journal of Public Health 82 (8): 1089–92.
[2] Kaiser Permanente, news release, Nov. 9, 2012.

[3] Wilson RS et.al. (2007) Loneliness and Risk of Alzheimer Disease. Arch Gen Psychiatry, 64(2): 234-240.

[4][4] Holwerda TJ et al. (2012) Feelings of loneliness, but not social isolation, predict dementia onset: results from the Amsterdam Study of the Elderly (AMSTEL). J Neurol Neurosurg Psychiatry: http://www.ncbi.nlm.nih.gov/pubmed/23232034.

[5] Anderson NB, Anderson PE (2003) Emotional Longevity. New York: Viking Penguin.

[6] House JS, Robbins C, Metzner HL (1982) The association of social relationships and activities with mortality: prospective evidence from the Tecumseh Community Health Study. American Journal of Epidemiology 116: 123–40.

[7] Berkman LF, Leo-Summers L, Horwitz RI (1992) Emotional support and survival following myocardial infarction: a prospective, population-based study of the elderly. Annals of Internal Medicine 117: 1003–9.

[8] Leserman J et al (2000) Impact of stressful life events, depression, social support, coping and cortisol. American Journal of Psychiatry 157: 1221–28.

[9] Cohen S et al (1997) Social ties and susceptibility to the common cold. Journal of the American Medical Association 277: 1940–4.