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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.

 

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Sustainable Medicine: the path to a patient-centred future

I have worked with Sarah Myhill for over 15 years, both as a Chronic Fatigue Syndrome (CFS) patient and also academically. As such, I have witnessed the crystallisation of the ideas that led to the concept and writing of Sustainable Medicine from both sides of the fence. These ideas were applied to me personally and I also saw them develop in my role as editor of Sarah’s writings, and also of her website – http://www.drmyhill.co.uk/wiki/Main_Page

Sustainable Medicine: swinging the pendulum back in favour of the patient

Sustainable Medicine follows a logical path, with the ultimate goal of empowering readers to take charge of their own health. This empowerment will not only help to heal diseases already present in readers, but also, and equally crucially, will lay down a route map for the healthy to remain healthy. It is for everyone.

Sustainable Medicine by Dr Sarah Myhill
Sustainable Medicine by Dr Sarah Myhill

The starting point of this journey was the realisation that 21st Century Medicine is not working for the benefit of the patient. So much of modern medicine is driven by vested financial interests that the patient is almost completely forgotten in this process. The patient, the one who knows their body, and the one who is suffering from the symptoms and diseases, is often ignored or, at best, side-lined or even patronised, in the diagnosis and treatment of their disease. Worse than this, modern medicine is not “sustainable”, either for society or the patient, because the use of powerful symptom suppressing drugs often escalates the disease process, rather than reversing it.

Sustainable Medicine has the simply stated objective of swinging the pendulum back in favour of the patient and away from those vested interests.

Sarah Myhill is an inquisitive person. As a patient, you notice this the very first time you speak with her or meet her. She is not like other doctors; there is a genuine desire to know you, and your life, and where you have worked and lived, and so on. In short, Sarah wants to know the ‘whole’ you; she is not a “Symptom List” doctor, by which I mean a physician who asks for your symptoms and then “replies” with a prescription pad. Put crudely, by knowing you better, Sarah can treat you better, although this underplays her most endearing quality; she likes her patients and treats them as equals.

This innate inquisitiveness naturally led Sarah always to ask the question ‘why?’ and in the practice of medicine this question is translated into a quest to find the root causes of disease and symptoms.

This is where Sarah’s 30 years of clinical experience made its mark known and also where the “logical path” was laid down.

First, Sustainable Medicine discusses symptoms, not as something to be immediately squashed with powerful prescription drugs, but rather as signposts as to what may be going wrong. Symptoms are the early warning system of the body that all is not right.

The next step along this logical path is an exposition of what mechanisms may be causing these symptoms and how one can identify which particular mechanisms are at play in this patient. The identification of these mechanisms is achieved by tests and clinical signs and symptoms.

At this point along the logical path, the reader will have identified their symptoms and also isolated the mechanisms causing those symptoms. The next step is to lay out the “tools of the trade”, that is the interventions, that can be put in place to treat those mechanisms as identified. These interventions are “sustainable” in that they reverse, not escalate, disease processes.

The logical path is now complete:

Symptoms => Mechanisms of disease => Sustainable Treatments (“tools of the trade”) to treat and reverse these Mechanisms

By way of example, Sustainable Medicine then looks at very many individual diseases, identifies the underlying mechanisms of these diseases and then applies the “tools of the trade” required to reverse these disease processes. To further illustrate this logical path, Sarah concludes with some case studies of her own patients, ranging from diseases such as chronic lymphatic leukaemia to inflammatory arthritis to CFS.

Sustainable Medicine was launched at a Biocare Advanced Education Day on 13 July 2015, where Sarah detailed her views on the mechanisms and sustainable treatments as applied to CFS, as well as discussing the critical roles played by inflammation and immune system issues in many modern diseases.

Craig Robinson, Editor, Sustainable Medicine.

 

Read the first chapter of Sustainable Medicine for free here or order your copy. Want to tell us what you think of the book? Leave a review on Amazon, and if you have any questions you can contact Craig and other followers of Dr Myhill’s protocol for CFS in the Facebook group.

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Where has the patient gone?

An Amazing Murmur of the Heart by Dr Cecil Helman

We believe in evidence-based holistic medicine and approaches to health that recognise the individual in treatment and in care – things that we feel are all too often overlooked in mainstream medicine. That is why we are passionate about the books we publish. Our authors are dedicated to helping people help themselves through difficult health conditions, often challenging received wisdom to look at problems in new ways.

We have spent many hours poring over all the books on the Hammersmith bookshelf, but no matter how much we think we know about a subject we can still surprise ourselves by finding something new in the huge repository of knowledge represented in our books.

So what better way to celebrate, share and discuss our wealth of health information than to start a blog?

Rather than keeping all this invaluable information hidden away, we will share excerpts from different books, compare and contrast different ideas and ultimately (we hope) help more people enrich their lives through learning about their bodies and minds, and the emotions that tie us together as human beings.

Meet Dr Cecil Helman – GP, medical anthropologist and acclaimed writer

We are fortunate to have a hugely knowledgeable and talented network of authors, made up of health practitioners, researchers and expert patients from a wide range of backgrounds, but perhaps the one who best expresses our philosophy is the late Dr Cecil Helman.

dr-cecil-helman

Cecil Helman – GP, medical anthropologist and acclaimed writer – looks back in his final book An Amazing Murmur of the Heart on a life-time of encounters with patients to ask ‘Where has the patient gone?’ and answers that patients ‘are still here, waiting for their doctors to notice them again, to shift their attention away from all their magic machines and high tech tests, and to listen to their stories again. And hidden away in those stories, to hear the faint, almost inaudible, murmuring of their hearts.’

Here’s one of the most moving stories from the book, taken from Chapter 3 The Dybbuk of Eddie Barnett:

Some days the pain is ‘sharp’ and ‘intense’, on other days ‘dull and constant’, or merely a ‘vague ache’ or ‘discomfort’. In turn it is ‘heavy’, ‘shooting’, ‘burning’, ‘stabbing’, ‘shocking’ or ‘throbbing’.

Sometimes it is accompanied by other symptoms, such as a headache, vague tummy aches, or feelings of stiffness in his neck, shoulders, or in one leg or the other.

Mr Barnett speaks of his pain all the time. He seems obsessed with it. Consultations with him always leave me feeling frustrated, exhausted, drained of energy. He follows every suggestion I make with another question, and one after that. Asking him for more details of his pain provokes even more requests for help, and then more after that. He is insatiable, unsatisfiable – like an elderly bearded baby, sucking desperately at an emptied breast.

And yet every medical test he’s had so far has shown no physical abnormality whatsoever. He has been blood tested, X-rayed, scoped, scanned, monitored and probed by hospitals and pain clinics all over the
city. But each time the tests prove negative.

I offer to refer him to a psychiatrist, a therapist, a counsellor, even a priest, but he always refuses.
‘There’s nothing wrong with me up here,’ he says emphatically, tapping his forehead. ‘I’m not mad. It’s just that I’ve got this terrible pain that will not go away. Do you understand? It’s the pain that’s giving me depression. Not the other way round.’

Months go by. Pointless, frustrating months. None of my treatments seem to work, none of my pain-killers. And then, as time goes on, I begin to notice something about the unusual way he refers to his pain. It is that he always groups his disparate symptoms into a single, painful entity, and then describes this malign essence as an ‘It’. As if it were a foreign Thing, an abstract being with its own volition, its own malevolent personality.

‘Now it has moved to my other shoulder,’ he says, or, ‘Now it’s boring right through my chest.’ ‘It won’t let me sleep at night,’ he says, ‘and it’s making me depressed,’ ‘It’s driving me mad.’ He speaks as if this entity has singled him out. For some unknown reason, it has chosen to enter his body, and to take up residence among his organs and cells, and then to torture him mercilessly for so many years. ‘It’s killing me, doctor,’ he says, again and again, ‘It’s really torturing me.’

More pain-killers, more futile advice. Still no improvement. But despite this apparent lack of success, I gradually become aware that something is happening to the pain during our meetings. Something of what I say to him is being heard – at least on the bodily level. For I notice that often, in response to one of my suggestions (especially one that is particularly emphatic), the pain suddenly comes to life. It seems
for a while to go berserk. It begins to leap frantically around his body, like a caged animal trying to escape. It appears first in one part of his body, then swiftly in another. Burrowing in and out of different areas of his head or chest or abdomen with amazing rapidity – sinking then emerging, chewing its way out of this joint or that limb like a demented beaver.

If Eddie Barnett and I had been living in one of those more traditional, tribal societies – the ones I’d learned about during my anthropology studies, shortly after medical school – I might have called in an exorcist or a shaman to remove his pain, and not a psychotherapist. But instead of a ritual of feathers, drums or holy relics, he has had to make do with a young, inexperienced family doctor. And also with all those white-coated specialists at the hospital to whom he’s been referred, and who have also brandished their stethoscopes, syringes and tablets at him – all without effect.

A year goes by, without any change. My treatments are pointless, my medical textbooks quite useless. I begin to delve instead into all those books on my shelf on folklore and anthropology. And to pay much more attention to the characteristics of the pain itself, for when I do so a sort of identikit slowly emerges. A profile of the ‘It’. One day I sit down and write out a list of every one of the attributes of its complex, and rather unique ‘personality’ that have manifested themselves in my office over time. And then I understand why that pain had sometimes seemed so familiar. For as Eddie Barnett described it – and as the pain itself spoke, indirectly, yet audibly through him – it was actually the mirror-image of his own
personality. In fact, everything that Eddie Barnett is, the pain is not.

Where Eddie is rigid, his body hardly moving beyond its tense, frozen posture – the pain is mobile. It moves here, dances there, flying swiftly from one part of his body to another, quicker than the eye could
follow. Where he is uncreative, unable to formulate any new ideas or new ways of living his life – the pain is cunning and intelligent. It is endlessly creative in its invention of new forms, new appearances, new ways of dancing among the limbs and organs of his body. Where he is dull and boring, his voice flat and monotonous – the pain seems to live an exciting life. It clearly has a temperament that is vibrant and versatile, one full of surprises. Where he is almost moribund, in an emotional and social sense – the pain is very much alive. In fact, it seems to be looking forward to an even longer life, within its warm, mobile, comfortable home. Where Eddie is frozen in his unhappiness, unable to make any decisions, or decide what to do – the pain is endlessly innovative. There is no end to its ingenuity, and to the strategies that it has designed to defeat the doctors. Where he is passive, fatalistic and defeated by life
and its many vicissitudes – the pain fights back. Its survival instincts are evidently powerful, and never seem to slacken. It is active in self-defence. It intervenes in history. It outwits – again and again – those like myself who would drive it out into the wilderness. And finally, where Eddie is stifled and often inarticulate – the pain is garrulous. Nothing can halt its talkativeness, its endless flow of colourful images in its chosen language – the dialect of symptoms.

Like so many other symptoms in medical practice, that pain is telling a
story.

To read the rest of Eddie Burnett’s story and the legend of the dybbuk order An Amazing Murmur of the Heart as paperback or ebook. You can also preview the first chapter for free.