Lessons from patients’ journeysBMJ 2013; 346 doi: https://doi.org/10.1136/bmj.f1988 (Published 03 April 2013) Cite this as: BMJ 2013;346:f1988
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I was encouraged by Peter Lapsley’s confirmation that Patient Journeys do indeed help doctors to reach the correct diagnosis more quickly, and wish to offer my own experience in the hope of furthering that purpose.
I had three head injuries between 1972 and 2003: an accident when I was driving a truck in 1972, a violent assault in 1985 when I had a basal skull fracture, and the third head injury in 2003. After this I began to suffer from right neck pain from spondylosis, dizziness when I turned my head, attacks of acute vertigo with vomiting (though these subsided), and aches and pains. To these symptoms were added tinnitus and deafness in my right ear, and headaches. In 2004 I was referred to a dizzy clinic, but with no improvement in my health. By 2006 I was still suffering all my previous symptoms, with the addition of pains in my face, and tingling and numbness in both hands. I was diagnosed with Menieres symptoms. My GP found hypothyroidism, which he diagnosed as primary, and prescribed thyroxin. At this point I started to wonder if my problems might stem from my pituitary gland. I had a private BUPA test that showed my TSH levels were borderline low. However, a short synacthen test that year showed no abnormalities.
In 2007, desperate that I was feeling no better, and now suffering from atrial fibrillation, chest discomfort, chronic fatigue and sleep problems, I approached an eminent endocrinologist privately, but neither he nor the endocrinology department at Manchester Royal Infirmary discovered what was wrong with me. In 2008, in fact, I was discharged from that hospital with a diagnosis of chronic fatigue syndrome and a letter that said “We have explained to Mr Barker that there are no signs of an underlying endocrinological problem to explain his many symptoms . . . there may well be an element of psychosomatic or depressive problems . . I am concerned that he may go on to undergo further investigation and medicalisation of his symptoms,” and suggested cognitive behavioural therapy.
Now at the end of my tether after four years of dizziness, I changed my GP in order to be referred privately to Dr Tara Kearney, consultant endocrinologist at Salford Royal Hospital. How I wish I could have been treated by her from the beginning. Here at last, in 2008, I made two discoveries. One was that around a third of head injuries cause pituitary problems , and the symptoms can include dizziness, tingling and numbness, headaches and chronic fatigue. The other was that the short synacthen test is not a reliable way to diagnose ACTH or growth hormone deficiency, as it misses about 40% of cases . At last I was given the right tests – the glucagon stimulation test and the arginine test – which together showed that I was suffering from growth hormone deficiency and ACTH deficiency. Dr Kearney said of me, “he has certainly had conflicting opinions from several endocrinologists, however I have checked several insulin stress tests and glucagon tests and I am certain that Mr Barker has evidence of pituitary dysfunction.” At long last I began the appropriate treatment.
Earlier, one of my GPs and a consultant did say it “was all in my head,” and this, sadly, turned out to be prophetic, though not in the way they meant.
I wish I could say that this was the end of my troubles, but I had been so long deprived of growth hormone that my abdomen had swollen and I developed divancation of the rectus sheath and below that an incisional hernia. I am still very ill. I feel that if only there had been more awareness of the considerable risk of pituitary failure after head injury, and the shortcomings of the short synacthen test, my whole story might have turned out differently. But it will be a comfort to me if my story alerts doctors and helps others to be diagnosed.
 Schneider HJ et al, Hypothalamopituitary Dysfunction Following Traumatic Brain Injury and Aneurysmal Subarachnoid Haemorrhage: A Systematic Review, 2007, JAMA http://jama.jamanetwork.com/article.aspx?articleid=208915
 Dorin RI, Diagnosis of Adrenal Insufficiency, 2003, Annals of Internal Medicine, https://annals.org/article.aspx?articleid=716603 The MEDLINE database was searched from 1966 to 2002 for all English-language papers related to the diagnosis of adrenal insufficiency, and it was found that for diagnosing secondary adrenal insufficiency, the sensitivity of the short synacthen test was 57-61%.
Competing interests: No competing interests
I agree with the comment, 'We have repeatedly learnt that although doctors are comfortable with uncertainty, patients are far less so', in that patients with symptoms want and need a diagnosis to identify and put a name to what they are experiencing. However, it is important to note that people being invited to eg breast screening (often wrongly referred to as 'patients' and, according to recent research, likely to become patients if they accept the invitation) need and want not only information on known benefits, and harms of the procedure, but on identified uncertainties, in order to make an informed choice and for any consent to be valid. In these circumstances the uncertainties, and therefore risks, may carry as much weight as the benefits or harms.
Competing interests: No competing interests
Hopefully, my story, published in the bmj in 1998 with accompanying physician commentaries, had a similar educational effect as the Patient Stories series (Deadly Charades, M Blennerhassett, bmj 1998; 316: 1890-91). To have acknowledgement of the issues meant so much to me. After years of meeting brick walls while trying to implement change for the sake of future patients, here at last was a platform for my voice. By publishing my story, the bmj showed they were listening to patients and accepted the need for change. I like to think this helped open the door to greater use of patients’ stories in medical education.
It also gave me the confidence to write widely in journals and prompted me to expand the article into an educational tool to help bridge the gap between professional and patient. I wanted it to be more than just a ‘how it was for me’. Nothing Personal, disturbing undercurrents in cancer care (Radcliffe Publishing 2008) contains the full story written around poems jotted down at the time of treatment, with discussion sections looking at what could have made things better and research references for better practice. It raises many issues, not least those of communication and information, and illustrates the cumulative psychological harm of paternalism. It has won wide acclaim. Thank you bmj!
Competing interests: Author of Nothing Personal, disturbing undercurrents in cancer care
Thanks Peter for a very thought-provoking article. It pulls out many themes that I can identify with too. Working with our patients helps to build a Partnership of Trust as we try to make sense of where we can help on the patient's own journey that we are very privileged to join. Managing uncertainty, reducing time to diagnose and treat, understanding the wider determinants of health and how to view things holistically, providing insights into novel treatments or a spotlight on old ones that may not be well known are all common things that we regularly do with our patients. I certainly did all these things in one surgery yesterday with my own patients and yesterday was not anything special for me (but the consultations were very illuminating for patients and myself). It will be interesting to find out what happens to the patients after my encounter with them - when they come back to tell me how they understood things, what they did, how their behaviour changed and whether they improved or not. That in turn helps to change my behaviour and help me to be even better by learning directly from them. How privileged am I to be able to do that - to learn from my patients and then to share their experience with others too - in their own words! Here are testimonials from patients themselves who write or speak more eloquently than I could ever imagine myself
I was struck by your closing remarks about doctors willing to comment about patient's views of their own experience and reassuringly few healthcare units have reacted badly to what's been written about them even when things have not gone quite to plan. That should give us more confidence to trust our patients more and to encourage them to do more for themselves rather than expect us to do it all for them.
Although your experience has been that the best stories have been when doctors have described their experience as patients, that may be about them knowing what could / should happen and compare with their own reality. My experience has been different in that once patients are shown what they can do and where to look, they can articulate in their own words much better what this means for them. They do not have to be clinicians to do this but they need to be enabled, activated and supported.
And to see this in action and with much gratitude to Christie Hospital, Manchester, here is the Grand Round I did with a patient (Gill) describing how patients could help us all deliver better outcomes across a population.
This is not easy but very rewarding for all those willing to engage and go along the journey.
Competing interests: No competing interests