Journey of a patient editorBMJ 2013; 347 doi: https://doi.org/10.1136/bmj.f6913 (Published 20 November 2013) Cite this as: BMJ 2013;347:f6913
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Although I am personally familiar with Dr Richard's struggle through the illness she describes, this is a remarkable chronicle of personal experience through the healthcare system. As a GP I am sad so little of her experience came from primary care where I am situated in NZ. Her journey should have started earlier and in a kinder place so that she could return and be supported by those who knew her well. I see my own patients suffering similarly and I realise that I must make a greater effort to attend them - and spend a little time - when they are incarcerated in such institutions and traumatised by their interventions. This week 2 patients of mine died in extremis and I was too busy to attend them in hospital.
Sadly, I also see the demise of 'real' nursing - Tessa does not address this head on in fear of offending - where the ownership of qualifications and ability to put in iv lines out trumps the caring that patients need. I see this space occupied by carers, usually nurses qualified from overseas who cannot get employment due to the regulations we create. It is the carers now who wash one's private parts, comfort the distressed elderly lady with a wet nightie, tell them not to worry, feed people who can barely swallow, pray for them (they are often religious) and generally attend to their needs. They do what nurses used to do. Where are our own people and where is our caring? Of course, doing other jobs because of better pay. Somehow the price of compassion has been lost in the NHS and probably across many other healthcare systems in a morass of targets, pathways and deliverables.
This article should be given to every medical students and trainee nurse to help them understand why we are here. Giving it to politicians, could be also be productive but likely to end up, alas, in the too are basket. Small compensation to me that I get a huge 15 minutes in primary care to see my NZ patients but I still struggle to keep on time knowing that everyone really needs to talk, be cared for, reveal something they didn't attend to discuss, and get to know me so one day they might pour out their hearts like the doctor friend I should be, but rarely am.
Competing interests: No competing interests
From her own experience of illness, Tessa Richards, a doctor and senior BMJ editor, extols the humane acts that made being a patient tolerable .
Despite unstinting family and professional support, it took the warm hug and "the offer of prayer" from an ancillary nurse to give her solace.
Contrast this with the case of a GP who was cleared of sexual misconduct by the Medical Practitioners Tribunal Service.
After the panel had cleared him of the charge, the GMC argued that the GP, a Coptic Christian, should be given a warning for “a departure from professional standards” for offering the patient, a Roman Catholic, a holy picture as a “blessing” .
To foster a spirit of ecumenism, may I suggest that the GMC seeks treatment from Dr Richards.
Dr John Doherty
1. Richards T, Journey of a patient editor, (20 November 2013), BMJ 2013;347:f6913.
2. Dyer , Cleared GP asks police to investigate patient for perverting course of justice, (13 November 2013), BMJ 2013;347:f6836.
Competing interests: No competing interests
Doctor-turned-patient stories used to annoy me. I wrote, 'the doctor-turned-patient can never suffer the vulnerability, powerlessness and hurt of the ingenuous patient, totally ignorant of medical cultures and systems. Also, patients often do not know what the hospital policies are, so are powerless for that reason, whereas doctor-patients can use their knowledge of policies and guidelines to circumvent them or gain advantage' (Nothing Personal, disturbing undercurrents in cancer care).
The statement is true to some extent, but after reading Tessa Richards' doctor-become-patient story, I regret making such a sweeping generalisation, for her experiences resonated with me on so many levels. I could sense her silent protest at the routine but unnecessary use of a wheelchair when going to the operating theatre ('enforced dependence' – heralding imminent decline?) an issue explored in one of the poems which poured from me during and after my cancer experiences, later incorporated into my book. Like her, I experienced an immense sense of isolation; the need for holistic, whole person, care; lack of adequate pain relief; and enforced proximity to the last days of a dying patient. Despite her gratitude to staff, Tessa Richards' mentions 'mutinous thoughts': I wrote about the conflict of experiencing huge gratitude for the clinical care, yet at the same time feeling like a rebellious teenager.
Tessa Richards' experience was nine years ago. Mine was in 1990. We both questioned 'why?' We both hoped our experiences would be used as learning tools. The bmj gave prominence to my story in 1998, along with two doctors' commentaries. In response, a oncologist sent me a picture postcard of a tranquil scene, thanking me. She wrote, 'My hand to you in love. After reading your account, I will change my own practice and try to influence that of my colleagues'. I still have that postcard.
I became a patient representative, advocate, campaigner and author. My book, Nothing Personal, disturbing undercurrents in cancer care'(winner, the Medical Journalists' Association Open Book Award in 2009 and given as an essay prize by the Royal College of Nursing) was aimed at medical education, with discussion sections throughout looking at what needed to change and research references for better/evidence-based practice. I wrote, 'Them and Us need to become 'We'.
I have seen many improvements in health care over the past 23 years, although some issues still surface time and time again. As age has crept over me, so, co-morbidities and healthcare experiences warranting use as learning tools compete for recognition. At the same time, I have been acutely aware of the increasing difficulties faced by those working in this caring profession. Years of user involvement entailed collaborative working alongside many dedicated, patient-centred doctors and nurses, which in turn has led to mutual respect and trust.
In another article in the same issue (Tell us how it was for you) Tessa Richards refers to www.patientopinion.org.uk where patients' stories can be shared and, more importantly, may be used to improve healthcare.
Fortunately, it is beginning to be recognised that the need for compassion in healthcare extends to the well-being of staff, as well as patients. I would like to flag up the online community at www.heartsinhealthcare.com set up by Dr Robin Youngson, an anaesthetist from New Zealand. This is a place where healthcare professionals and patients who aim to put compassion back into healthcare can come together and find like-minded people. They share stories and examples of how to improve job satisfaction and compassionate patient care, despite today's pressures and time constraints.
Finally, I would like to thank Tessa Richards for her bravery (on more than one level - one has to re-live the experience in order to write about it effectively), frankness and patient-centredness in writing this memorable account. One to keep. One to share.
Competing interests: Author, Nothing Personal, disturbing undercurrents in cancer care.
This isn't the first time I've read an account of a patient's journey through such severe treatment courses and surgical routines, but for some reason this article has resonated more with me than any others I have read. I'm not sure whether it's because it's through the eyes of a medical practitioner, and so the accuracy and detail of the report is particularly harrowing, or purely because I have had a brief stint away from the medical field and so lost my (unfortunate) shield of desensitisation (I'm currently studying a BSc and so am out of hospitals), but I feel extremely moved by Tessa's account.
During my time on the wards throughout last year, the Foundation doctors would regularly encourage us students to approach patients in our free time and simply sit down and have a conversation with them. They would assure us that such a simple act on our part could prove to be the highlight of that patient's day; a statement to which I would inwardly roll my eyes. A combination of the societal trend where people 'keep to themselves' and a couple of first-hand bad experiences (an elderly patient encouraging me in an expletive-ridden manner to mind my own business) led me to ignore such advice, and minimise my patient contact to those interactions that had a specific medical purpose.
However, as I read through Tessa's journey and became increasingly absorbed in her story, I found myself willing the hospital staff on and hoping that someone would reach out and help pluck her from the depths of her isolation.
This made me wonder; was there a Tessa on those wards whilst I was meandering behind the team on a customary ward round? Almost certainly the answer is yes, and I am ashamed to think that I missed so many opportunities to make a positive impact on the lives of these people.
I will go back into the clinical world next year with a renewed sense of responsibility, and a much greater appreciation for the struggles that patients like Tessa face.
If it is true that the European Working Time Directive has minimised the continuity of care for such patients, then that may be an unfortunate truth. However, I think the least we can do is to establish a new ethos amongst the medical student population; 'the continuity of company'. I'd implore every one of my colleagues to make it a fixture in their routine to just have a 10 minute chat with the same handful of patients every day after the ward rounds. I think this simple act could genuinely have the same therapeutic effect as a new drug regimen for these patients, and starting at this point in the training pathway will help to foster positive attitudes amongst us future doctors about the value of such non-medical 'interventions'.
Competing interests: No competing interests