‘The woods are lovely, dark and deep, but I have promises to keep, and miles to go before I sleep.’
The words of the poet Robert Frost will ring true for many readers who stretch the working day into the dark hours whilst others sleep. However, not even the most hardened workaholic or insomniac can run in the fast lane without the occasional pit stop. Our bodies are influenced by a circadian rhythm, whereby we experience a dip in our state of alertness twice in every twenty-four hours. This produces a state of sleepiness at some stage during the afternoon, bringing the urge to ‘cat nap’. The good news is that research has shown that the performance of those who sleep for less than six hours at night and then power-nap during the day is as good as those who sleep for longer at night. Indeed, a post-lunch nap improves work performance into the afternoon and early evening.
The circadian rhythm is influenced by how hungry we are. Our bodies have a mechanism whereby the brain keeps us alert when we need food; a mechanism which switches off when we have satisfied our hunger. That is a second reason why the urge to nap in the afternoon is irresistible for many, and explains why we have trouble sleeping when we are hungry.
However, our body-clocks have a greater influence than just affecting our state of alertness. The author Ernest Hemingway was showing more insight than he realised when he half-jokingly said ‘I love sleep; my life has a tendency to fall apart when I’m awake’. It is estimated that the body-clock controls some 15% of the activity of our genes; which means that disruption of the body-clock can affect a long list of bodily functions apart from sleep patterns. Our metabolism is very sensitive to such alterations, with the effect that insomnia, mood changes, heart disease, cancer and disorders of the brain can result. Because the body cannot fight infection until it recognises that one exists, we are more prone to infection at times of day when our metabolism and wakefulness is at its lowest ebb. Interestingly, research has shown that patients with septicaemia (blood poisoning) are at greater risk of dying between 2 a.m. and 6 a.m. This has in turn started scientists looking at what the optimum time is for antibiotic administration in order to fight infection with greater success.
When to give medication is also a question in respect to heart disease and high blood pressure. Both of these conditions are linked to high levels of a chemical called aldosterone. The latter is affected by the circadian rhythm, which means that drugs controlling blood pressure may be best targeted at specific times. Death in the early hours is an occurrence well known to doctors and funeral directors; and for those living near natural waterways, it is noticeable that the time of demise often occurs when the tide is out. Given the various research we are commenting on, this is perhaps not such a daft observation as previously thought.
Finally, the seasons also play a part in our well-being. Once again, research has found that blood pressure is better controlled during the summer, with the rates of heart attacks and strokes being higher in winter. This may not be just because of the cold weather, as people tend to exercise less, eat more, and increase weight during the winter. Diets during the winter months also tend to be higher in salt content.
All in all, it is increasingly clear that there are forces at play which influence us in more ways than previously imagined. Our individual lifestyle is a key factor, and armed with the knowledge of such research as above, it is open to us to take measures which may have a profound effect on our well-being. As Leonardo da Vinci said, ‘a well spent day brings happy sleep’. It may also bring health and a long life.
(First published in the Scunthorpe Telegraph, Thursday, 1st March 2012)
Tuesday, March 27, 2012
Saturday, March 24, 2012
Decisions, Decisions, Decisions...
‘An empty book is like an infant’s soul, in which anything may be written. It is capable of all things, but containeth nothing.’
So wrote Thomas Traherne in the 17th century. Sadly, a converse situation arises for many older people. We end up as a full book but, for some, the capability to do anything in a meaningful or reliable way starts to wane and mental incapacity is the result.
Whilst well, we take mental capacity for granted. Certainly as adults, we decide for ourselves what time to get up in the morning, which clothes to wear, what to eat, where to go, how to spend our money, and so on. This is called ‘capacity’. Capacity means that we can make our own decisions in our own best interests. It is something which is considered a ‘right’ and is protected in law.
By ‘mental incapacity’ we mean the inability to make our own decisions. The causes are many, although the commonest for the elderly is dementia. That said, there are also conditions which affect younger people and affect their capacity to make decisions; congenital disorders, brain damage at birth, head trauma due to accidents, brain tumours, mental illness, severe physical illness, and the effect of drug or alcohol abuse are examples.
For some people, the loss of capacity may be a temporary state of affairs; for others it is permanent. Whichever the case, the loss of capacity can have a devastating effect on our lives. During such times, we rely on those we trust to make decisions on our behalf. However, there are some decisions which even one’s next of kin cannot take without the legal authority to do so.
In 2005, a law was passed called the Mental Capacity Act. The law is intended to protect a person who lacks capacity, and thereby ensure that decisions continue to be made in that person’s best interests and in accordance with what their own wishes would be if they were still able to make decisions for themselves. Five principles underpin this law. The first is that a person is assumed to have capacity unless proven otherwise. The second is that any decisions made on a person’s behalf must be as close as possible to what that person would have wanted. The third principle is that, wherever possible, a person should be assisted in making a decision for themselves (for example, by using very simple language or a different form of communication to explain the issue). The fourth principle is that a person has the right to make unwise decisions, as long as they understand the effects of such a decision. Finally, any decision made for a person should be the least restrictive and cause the least disturbance for that person.
Capacity is tested by the application of four questions: Is the information understood? Can the information be retained long enough to make a decision? Can the information be weighed up? Can the person’s decision be communicated in some way? The answer must be ‘yes’ to all four questions to prove capacity.
If a person lacks capacity, they need someone to act on their behalf. Many people will legally appoint a person to do this. That person has ‘Lasting Power of Attorney’. However, such a person can only be appointed whilst someone still has capacity. If no such appointment has been made, the person lacking capacity is protected by the Court of Protection, which will either appoint someone to act on behalf of the affected person, or will directly make decisions on that person’s behalf. Naturally, it is better if we appoint someone we know and trust, so we should all be granting a Lasting Power of Attorney to someone whilst we still have capacity, and regardless of how old we are or whether we are currently healthy or unwell.
A helpful leaflet on capacity can be downloaded from the Royal College of Psychiatrists’ website at http://www.rcpsych.ac.uk/mentalhealthinfo/problems/mentalcapacityandthemental.aspx. Further information can also be obtained from the Alzheimer’s Society, Mencap, MIND, your solicitor and GP.
(First published in the Scunthorpe Telegraph, Thursday, 23rd February 2012)
So wrote Thomas Traherne in the 17th century. Sadly, a converse situation arises for many older people. We end up as a full book but, for some, the capability to do anything in a meaningful or reliable way starts to wane and mental incapacity is the result.
Whilst well, we take mental capacity for granted. Certainly as adults, we decide for ourselves what time to get up in the morning, which clothes to wear, what to eat, where to go, how to spend our money, and so on. This is called ‘capacity’. Capacity means that we can make our own decisions in our own best interests. It is something which is considered a ‘right’ and is protected in law.
By ‘mental incapacity’ we mean the inability to make our own decisions. The causes are many, although the commonest for the elderly is dementia. That said, there are also conditions which affect younger people and affect their capacity to make decisions; congenital disorders, brain damage at birth, head trauma due to accidents, brain tumours, mental illness, severe physical illness, and the effect of drug or alcohol abuse are examples.
For some people, the loss of capacity may be a temporary state of affairs; for others it is permanent. Whichever the case, the loss of capacity can have a devastating effect on our lives. During such times, we rely on those we trust to make decisions on our behalf. However, there are some decisions which even one’s next of kin cannot take without the legal authority to do so.
In 2005, a law was passed called the Mental Capacity Act. The law is intended to protect a person who lacks capacity, and thereby ensure that decisions continue to be made in that person’s best interests and in accordance with what their own wishes would be if they were still able to make decisions for themselves. Five principles underpin this law. The first is that a person is assumed to have capacity unless proven otherwise. The second is that any decisions made on a person’s behalf must be as close as possible to what that person would have wanted. The third principle is that, wherever possible, a person should be assisted in making a decision for themselves (for example, by using very simple language or a different form of communication to explain the issue). The fourth principle is that a person has the right to make unwise decisions, as long as they understand the effects of such a decision. Finally, any decision made for a person should be the least restrictive and cause the least disturbance for that person.
Capacity is tested by the application of four questions: Is the information understood? Can the information be retained long enough to make a decision? Can the information be weighed up? Can the person’s decision be communicated in some way? The answer must be ‘yes’ to all four questions to prove capacity.
If a person lacks capacity, they need someone to act on their behalf. Many people will legally appoint a person to do this. That person has ‘Lasting Power of Attorney’. However, such a person can only be appointed whilst someone still has capacity. If no such appointment has been made, the person lacking capacity is protected by the Court of Protection, which will either appoint someone to act on behalf of the affected person, or will directly make decisions on that person’s behalf. Naturally, it is better if we appoint someone we know and trust, so we should all be granting a Lasting Power of Attorney to someone whilst we still have capacity, and regardless of how old we are or whether we are currently healthy or unwell.
A helpful leaflet on capacity can be downloaded from the Royal College of Psychiatrists’ website at http://www.rcpsych.ac.uk/mentalhealthinfo/problems/mentalcapacityandthemental.aspx. Further information can also be obtained from the Alzheimer’s Society, Mencap, MIND, your solicitor and GP.
(First published in the Scunthorpe Telegraph, Thursday, 23rd February 2012)
Saturday, March 10, 2012
Medical War Zone
In 2000, I retired from the Royal Army Medical Corps. However, reading through this week’s medical journals, I had the distinct impression that I should be taking my uniform out of the mothballs; for it appears that a war is even now taking place; one that I am firmly embroiled in, whether I like it or not. The battle ground is the National Health Service, and it currently has several open fronts.
The most important issue is the saga of the Health and Social Care Bill, which at the time of writing has just entered the Lords for its final stage there. As readers of this column know, I originally voiced serious concerns at the content and intention of this Bill in one of my earliest columns back in 2010. At the time, I was one of the few who dared to break ranks and speak out against the Government’s plans. Many of my immediate colleagues were muttering behind closed doors, but few would pin their colours to the public mast of disquiet and dissent. However, I thought the public had a right to know what was going on. After all, the NHS is your service as well as mine and, if there are to be major changes which will adversely affect the way health services are made available and delivered to patients, then the public has a right to understand.
However, in recent months, the map of those organisations expressing foreboding and alarm at the content of the Bill has altered considerably. Despite a continued rhetoric from the Government that the medical profession is behind the plans, there is now clear evidence that the majority of the health care professions are against the Bill. Such organisations include the British Medical Association (BMA), Royal College of Nursing (RCN), Royal College of General Practitioners (RCGP), Royal College of Midwives, Royal College of Radiologists, UK Faculty of Public Health, Academy of Medical Royal Colleges, Royal College of Physicians, Royal College of Anaesthetists, and the Royal College of Surgeons. Many are calling for the Bill to be withdrawn completely, on the grounds that it will do irreparable damage to the NHS.
Of course, there has already been damage inflicted, despite the fact that the Bill has not been enacted. Even before the Bill had gone through the first stages, the Department of Health was re-organising the local Primary Care Trusts, with widespread redundancies taking place in anticipation of the Bill being passed by Parliament. These changes cannot be reversed even if the Bill now fails, as important people have been lost to the service; people with a vast experience of running the NHS. In my opinion, that in itself deserves a judicial review. It is a gross misuse of a government’s power when it brings about widespread fundamental changes well ahead of a Bill’s debate and enactment in law. It is political arrogance beyond belief.
As a distraction to the above, there is the less well-known roll out of a service called NHS 111. At its core, this is a good idea; a national number to ring when health assistance is required at times other than in an emergency (when telephoning 999 is appropriate). However, the pilots have raised serious concerns for patient safety. In all, there have been nine serious untoward incidents across four of the seven pilots, wherein potentially life-threatening delay has occurred in patients getting assistance. The view of the medical profession is that the service should not be rolled-out until it is safe. The Department of Health is, as usual, playing deaf.
Other battle-fronts include the intended abolition of practice boundaries, thereby increasing the pressure on over-stretched GP practices that already feel under siege. Then there is the significant reduction in funding for practices, a GP recruitment crisis with unfilled vacancies, the imminent GP Revalidation process, and the need to register practices with the Care Quality Commission. That is all before we mention the subject of pension fund changes.
A recent study found that four in ten GPs have emotional exhaustion, a sense of depersonalisation, negativity, and a reduced sense of accomplishment; in effect they are burnt-out. Sadly, that finding is not a surprise, but it should raise significant public concern.
(First published in the Scunthorpe Telegraph, Thursday, 16th February 2012)
The most important issue is the saga of the Health and Social Care Bill, which at the time of writing has just entered the Lords for its final stage there. As readers of this column know, I originally voiced serious concerns at the content and intention of this Bill in one of my earliest columns back in 2010. At the time, I was one of the few who dared to break ranks and speak out against the Government’s plans. Many of my immediate colleagues were muttering behind closed doors, but few would pin their colours to the public mast of disquiet and dissent. However, I thought the public had a right to know what was going on. After all, the NHS is your service as well as mine and, if there are to be major changes which will adversely affect the way health services are made available and delivered to patients, then the public has a right to understand.
However, in recent months, the map of those organisations expressing foreboding and alarm at the content of the Bill has altered considerably. Despite a continued rhetoric from the Government that the medical profession is behind the plans, there is now clear evidence that the majority of the health care professions are against the Bill. Such organisations include the British Medical Association (BMA), Royal College of Nursing (RCN), Royal College of General Practitioners (RCGP), Royal College of Midwives, Royal College of Radiologists, UK Faculty of Public Health, Academy of Medical Royal Colleges, Royal College of Physicians, Royal College of Anaesthetists, and the Royal College of Surgeons. Many are calling for the Bill to be withdrawn completely, on the grounds that it will do irreparable damage to the NHS.
Of course, there has already been damage inflicted, despite the fact that the Bill has not been enacted. Even before the Bill had gone through the first stages, the Department of Health was re-organising the local Primary Care Trusts, with widespread redundancies taking place in anticipation of the Bill being passed by Parliament. These changes cannot be reversed even if the Bill now fails, as important people have been lost to the service; people with a vast experience of running the NHS. In my opinion, that in itself deserves a judicial review. It is a gross misuse of a government’s power when it brings about widespread fundamental changes well ahead of a Bill’s debate and enactment in law. It is political arrogance beyond belief.
As a distraction to the above, there is the less well-known roll out of a service called NHS 111. At its core, this is a good idea; a national number to ring when health assistance is required at times other than in an emergency (when telephoning 999 is appropriate). However, the pilots have raised serious concerns for patient safety. In all, there have been nine serious untoward incidents across four of the seven pilots, wherein potentially life-threatening delay has occurred in patients getting assistance. The view of the medical profession is that the service should not be rolled-out until it is safe. The Department of Health is, as usual, playing deaf.
Other battle-fronts include the intended abolition of practice boundaries, thereby increasing the pressure on over-stretched GP practices that already feel under siege. Then there is the significant reduction in funding for practices, a GP recruitment crisis with unfilled vacancies, the imminent GP Revalidation process, and the need to register practices with the Care Quality Commission. That is all before we mention the subject of pension fund changes.
A recent study found that four in ten GPs have emotional exhaustion, a sense of depersonalisation, negativity, and a reduced sense of accomplishment; in effect they are burnt-out. Sadly, that finding is not a surprise, but it should raise significant public concern.
(First published in the Scunthorpe Telegraph, Thursday, 16th February 2012)
Friday, March 09, 2012
Who Do You Think You Are?
‘Are you the poet?’
It was an interesting question; especially as it was posed towards the end of an entirely unrelated conversation. Well, it was towards the end of a medical consultation to be precise. I admit that it took me a little by surprise; not least because this heretofore unknown patient somehow knew that I write poetry. However, being something of a pedant, the question immediately raised further questions, particularly in respect to how I answered my inquisitor.
For example, the obvious difficulty for me was my patient’s use of the definite article. By using the word ‘the’, the implication was that there existed only one poet, which clearly wasn’t true if the question is taken in the context of the wider world of writing. However, to my knowledge, none of my medical colleagues in the surgery writes poetry, so the answer could be in the affirmative if that was the intended focus of the question.
The second conundrum was based on the concept of when is a person one thing as compared to another? For example, I think of myself as a doctor regardless of whether I am seeing patients or not. But am I a writer when I am not writing; or a poet when I am not physically writing poetry? Furthermore, can I be a doctor, a writer and a poet all at the same time? In our society, we tend to define ourselves and others by the person’s employment. So, for example, once a baker retires, he becomes ‘retired’; he is no longer a ‘baker’, and very rarely a ‘retired baker’. The fact that he is no longer baking tends (rightly or wrongly) to render the skill redundant when it comes to describing the person. So you can now see how such a small question can inadvertently lead me into a minefield of indecision in respect to giving a truthful answer.
Another question which now stumps me is ‘Where are you from?’ Until a few months ago, I would assume that the question was an enquiry into where I started life, in which case I would instantly reply that I am a Kentish Man. However, thanks to a research unit based in Cambridge University, I now have difficulty in answering even that seemingly innocuous question.
It is all Dr Peter Foster’s fault. He is the director of a research programme called Roots for Real (www.rootsforreal.com), which analyses a person’s mitochondrial DNA (mtDNA) and Y-chromosomal patterns and correlates the findings to a database linking modern-day man to the earliest of humans stepping out of Africa and, more specifically when, on their subsequent journey, their DNA mutated to its present-day form. The science is complex but fascinating, and I will leave you to read more on the website should you so wish. However, the upshot is that my Y-chromosomes (inherited through my father) originated 10,000 years ago from an area now known as northern Italy, at about the time of the last ice-age. As for my mtDNA (inherited through my mother’s maternal line), that is firmly centred on Crete and dates back some 40,000 years ago (yes, one of my great great etc. grandmothers knew Neanderthal Man). Furthermore, the same mtDNA has been identified in the remains purported to be those of the disciple, St Luke; thus making him a distant relative. St Luke, of course, was also a physician. So, when someone asks why I became a doctor, at least I can now honestly say that it is ‘in my genes’. However, it brings a whole new meaning to the question ‘who do you think you are?’ To answer honestly, I now need to know whether to take my reference from 52 years, 10,000 years or 40,000 years ago; for I now seem to be a Kentish Greco-Italian of an indeterminate age.
As for the original question, ‘are you the poet?’ I admit that I took the easy route. After a moment’s deliberation, I smiled and simply said ‘yes’.
(First published in the Scunthorpe Telegraph, Thursday, 9th February 2012)
It was an interesting question; especially as it was posed towards the end of an entirely unrelated conversation. Well, it was towards the end of a medical consultation to be precise. I admit that it took me a little by surprise; not least because this heretofore unknown patient somehow knew that I write poetry. However, being something of a pedant, the question immediately raised further questions, particularly in respect to how I answered my inquisitor.
For example, the obvious difficulty for me was my patient’s use of the definite article. By using the word ‘the’, the implication was that there existed only one poet, which clearly wasn’t true if the question is taken in the context of the wider world of writing. However, to my knowledge, none of my medical colleagues in the surgery writes poetry, so the answer could be in the affirmative if that was the intended focus of the question.
The second conundrum was based on the concept of when is a person one thing as compared to another? For example, I think of myself as a doctor regardless of whether I am seeing patients or not. But am I a writer when I am not writing; or a poet when I am not physically writing poetry? Furthermore, can I be a doctor, a writer and a poet all at the same time? In our society, we tend to define ourselves and others by the person’s employment. So, for example, once a baker retires, he becomes ‘retired’; he is no longer a ‘baker’, and very rarely a ‘retired baker’. The fact that he is no longer baking tends (rightly or wrongly) to render the skill redundant when it comes to describing the person. So you can now see how such a small question can inadvertently lead me into a minefield of indecision in respect to giving a truthful answer.
Another question which now stumps me is ‘Where are you from?’ Until a few months ago, I would assume that the question was an enquiry into where I started life, in which case I would instantly reply that I am a Kentish Man. However, thanks to a research unit based in Cambridge University, I now have difficulty in answering even that seemingly innocuous question.
It is all Dr Peter Foster’s fault. He is the director of a research programme called Roots for Real (www.rootsforreal.com), which analyses a person’s mitochondrial DNA (mtDNA) and Y-chromosomal patterns and correlates the findings to a database linking modern-day man to the earliest of humans stepping out of Africa and, more specifically when, on their subsequent journey, their DNA mutated to its present-day form. The science is complex but fascinating, and I will leave you to read more on the website should you so wish. However, the upshot is that my Y-chromosomes (inherited through my father) originated 10,000 years ago from an area now known as northern Italy, at about the time of the last ice-age. As for my mtDNA (inherited through my mother’s maternal line), that is firmly centred on Crete and dates back some 40,000 years ago (yes, one of my great great etc. grandmothers knew Neanderthal Man). Furthermore, the same mtDNA has been identified in the remains purported to be those of the disciple, St Luke; thus making him a distant relative. St Luke, of course, was also a physician. So, when someone asks why I became a doctor, at least I can now honestly say that it is ‘in my genes’. However, it brings a whole new meaning to the question ‘who do you think you are?’ To answer honestly, I now need to know whether to take my reference from 52 years, 10,000 years or 40,000 years ago; for I now seem to be a Kentish Greco-Italian of an indeterminate age.
As for the original question, ‘are you the poet?’ I admit that I took the easy route. After a moment’s deliberation, I smiled and simply said ‘yes’.
(First published in the Scunthorpe Telegraph, Thursday, 9th February 2012)
Monday, March 05, 2012
Revisiting the Expert Patient
‘Generally, society deals with death in a near hysterical manner, viewing practically every death as a tragedy and bereavement as an illness requiring healing.’
Such is the view of Blair Robertson, an NHS chaplain (BMJ, 14 Jan 12). His words were interesting to read as, in the same week, I had taken the topic of dying as the subject for this column. Society’s response to death is hardly surprising when we read of the remarkable lives of people such as Professor Stephen Hawking, the famous cosmologist, and author of the best-seller, A Brief History of Time. Only one week previously an article appeared in the national press informing the world that Prof Hawking was too unwell to deliver his 70th birthday speech (Telegraph, 9th Jan 12). Of course, Prof Hawking is always too unwell to deliver any speech, owing to a condition called motor neurone disease. In reality, any speech he has is electronically composed letter by letter, and then delivered by him using his cheek muscles to operate a voice synthesiser.
Prof Hawking is a wonderful example of how people with long term conditions can still lead remarkable lives. The fact that he has even seen his 70th birthday is a modern-day miracle. Although we tend to use the verb ‘to suffer’ in order to describe the process of living with a chronic condition, Prof Hawking is an example of how people can lead fulfilling and enjoyable lives despite their condition. I am sure that suffering does come into the equation, but so too does a life of satisfaction and pleasure. The trick is to know how to turn around the perception of unavoidable misfortune and pull from life a positive outlook and a sense of well-being.
Last year, I wrote about a new course available in North Lincolnshire. At the time, NHS North Lincolnshire was looking for ‘Expert Patients’; volunteers to train to deliver the course known as the Expert Patient Programme. Now, having seen the satisfactory completion of the first course, patients wishing to participate in future courses are being asked to put their names forward. Delivered during one afternoon per week over a six week period, the course is aimed at people living with long-term conditions. Note that I use the term ‘living with’ rather than ‘suffering from’, for that is indeed what this course is aimed at bringing about. It teaches the skills of self-management and action planning, how to deal with pain and extreme tiredness, how to coping with feelings of depression, the skill of relaxation and how best to exercise, tips on healthy eating, the need for communication with family, friends and health professionals, and last but no means least, how to positively plan for the future.
Writing in the Times Literary Supplement in September last year, the writer and poet Hugo Williams described his reaction to his need for dialysis to treat his kidney failure. Given the choice of dialysing on a daily basis at home or visiting the hospital four days a week, Williams chose the latter on the grounds that it would offer him the chance to ‘pretend to be still in the old free world’. That was his way of trying to ‘live with’ his condition rather than allowing it to take over his entire life. I have no doubt that both Williams and Prof Hawking would fully approve of the Expert Patient Programme.
Christopher Hitchens is another writer who I am sure would have given his seal of approval to the course. Sadly, he died last December. However, true to his inimitable self, and in spite of various tubes and other paraphernalia attached to him, he insisted on being propped at his desk during his final days and finished writing an article just hours before his own ultimate deadline. Hitchens amply demonstrated Prof Hawking’s exhortation: ‘Remember to look up at the stars and not down at your feet. However difficult life may seem, there is always something you can do and succeed at; it matters that you just don’t give up.’
(First published in the Scunthorpe Telegraph, Thursday, 2nd February 2012)
Such is the view of Blair Robertson, an NHS chaplain (BMJ, 14 Jan 12). His words were interesting to read as, in the same week, I had taken the topic of dying as the subject for this column. Society’s response to death is hardly surprising when we read of the remarkable lives of people such as Professor Stephen Hawking, the famous cosmologist, and author of the best-seller, A Brief History of Time. Only one week previously an article appeared in the national press informing the world that Prof Hawking was too unwell to deliver his 70th birthday speech (Telegraph, 9th Jan 12). Of course, Prof Hawking is always too unwell to deliver any speech, owing to a condition called motor neurone disease. In reality, any speech he has is electronically composed letter by letter, and then delivered by him using his cheek muscles to operate a voice synthesiser.
Prof Hawking is a wonderful example of how people with long term conditions can still lead remarkable lives. The fact that he has even seen his 70th birthday is a modern-day miracle. Although we tend to use the verb ‘to suffer’ in order to describe the process of living with a chronic condition, Prof Hawking is an example of how people can lead fulfilling and enjoyable lives despite their condition. I am sure that suffering does come into the equation, but so too does a life of satisfaction and pleasure. The trick is to know how to turn around the perception of unavoidable misfortune and pull from life a positive outlook and a sense of well-being.
Last year, I wrote about a new course available in North Lincolnshire. At the time, NHS North Lincolnshire was looking for ‘Expert Patients’; volunteers to train to deliver the course known as the Expert Patient Programme. Now, having seen the satisfactory completion of the first course, patients wishing to participate in future courses are being asked to put their names forward. Delivered during one afternoon per week over a six week period, the course is aimed at people living with long-term conditions. Note that I use the term ‘living with’ rather than ‘suffering from’, for that is indeed what this course is aimed at bringing about. It teaches the skills of self-management and action planning, how to deal with pain and extreme tiredness, how to coping with feelings of depression, the skill of relaxation and how best to exercise, tips on healthy eating, the need for communication with family, friends and health professionals, and last but no means least, how to positively plan for the future.
Writing in the Times Literary Supplement in September last year, the writer and poet Hugo Williams described his reaction to his need for dialysis to treat his kidney failure. Given the choice of dialysing on a daily basis at home or visiting the hospital four days a week, Williams chose the latter on the grounds that it would offer him the chance to ‘pretend to be still in the old free world’. That was his way of trying to ‘live with’ his condition rather than allowing it to take over his entire life. I have no doubt that both Williams and Prof Hawking would fully approve of the Expert Patient Programme.
Christopher Hitchens is another writer who I am sure would have given his seal of approval to the course. Sadly, he died last December. However, true to his inimitable self, and in spite of various tubes and other paraphernalia attached to him, he insisted on being propped at his desk during his final days and finished writing an article just hours before his own ultimate deadline. Hitchens amply demonstrated Prof Hawking’s exhortation: ‘Remember to look up at the stars and not down at your feet. However difficult life may seem, there is always something you can do and succeed at; it matters that you just don’t give up.’
(First published in the Scunthorpe Telegraph, Thursday, 2nd February 2012)
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