Following yesterday’s publication of the Infected Blood Inquiry report, Dr Nasir Nabi reflects on his time in haematology at the beginning of his career
As I enter the twilight of my career, I am beginning to wonder whether I have killed more patients than I have saved; whether I have harmed more than I have helped.
This afternoon I listened to Sir Brian Langstaff’s long awaited report for the Infected Blood Inquiry. With a gestation period of five years it was long overdue. It should send shivers down the spine of every practising doctor.
I qualified in 1987 and my pre-registration medical house job rotated with haematology at the Royal Victoria Infirmary in Newcastle. Those were the days when a junior doctor worked one in three nights and weekends which equated to 83 hours a week officially (but over 90 hours if you added in the extra hours needed to do the job).
It was a tough time and a tough place – a prestigious central job in haematology in a tertiary service at the forefront of research. It felt an honour and a privilege to be part of this great team: looking after bone marrow transplant patients; administering chemotherapy in the isolation tents; looking after Hickman lines; setting up blood, plasma and platelet transfusions; and taking part in the grand ward rounds knowing that I had completed the daily blood tests and all the results had been neatly filed into the notes ready for the professor’s keen eye.
But there was the other side to the job. The long hours which included getting to the ward at 7am to ensure all daily blood tests were complete by the time ward round started at 8am; the constant pressure to perform; the sadness of witnessing so many deaths of young patients, including a fellow senior house officer, and then talking to their bereaved families. This took its toll and resulted in a fellow house officer in the medical department taking sick leave due to work-related stress. This consequently resulted in an even more onerous rota for those of us left behind – employing locum cover was not the done thing in those days.
In addition to all the normal on-call duties (taking the crash bleep, attending casualty and arranging transfer of patients to the medical ward, taking emergency GP calls as well as covering up to six medical wards) there was an extra duty especially for the haematology house officer.
Every on-call involved two or three patients with haemophilia self-presenting to the ward and self-diagnosing a bleed into one of their joints. There was the minimum of assessment – no scan, no x-ray, no blood test. Most of the haemophiliac patients had chronically swollen and disfigured joints and some were even in wheelchairs. It was hard to tell the acute swelling from the chronic swelling; hard to distinguish between drug-seeking behaviour and genuine pain. They would all be given a shot of factor VIII and morphine and would soon be on their way.
I remember expressing my uncertainty and discomfort at the lack of investigations. My senior house officer reassured me ‘you just have to take the patient’s word for it’. There was certainly awareness of the dangers of blood-borne viruses, but in the 80’s Hepatitis C was known as ‘non-A, non-B hepatitis’ as we could not test for it. My student medical virology book contained just one short paragraph on ‘Acquired Immune Deficiency Syndrome.’ There was an unspoken awareness that this was poor practice, but it still went on – there was no real discussion of the risks and benefits of Factor VIII. The consultants did not appear too interested and agreed with my senior house officer.
So I carried on doing it and did not question it again for the next six months. The weight of the medical hierarchy felt too heavy on me. Besides, I could see what great strides were being made in improving the chances of all the patients on the ward with leukaemia and lymphomas.
Now in general practice I wonder about those times. I think about Ivan Illich. I think about the adage ‘first do no harm’. I think about shared decision making Calgary-Cambridge style. I think about my role as a trainer and about what role model we set for our future generation of doctors.
Have I? Have I killed more patients than I’ve saved? And have I harmed more patients than I have helped?
Dr Nasir Nabi is a GP in Newcastle
I also did these rotas many years ago and somehow wondered how I was allocated a regional specialist tertiary paediatric haematology referral centre as part of a GP rotation. I recall looking at specialist textbooks of hundreds of pages in content on single paediatric illness and still not being able to find in this huge textbook what the disease the patients parents sitting in front of me, relayed to me at 2am in the morning actually was . However, senior registrars at the time seemed to know everything about everything . I have no idea also of the harm that may have been caused but at the very least I was fairly wide awake at all hours and know that I tried my best even it was no where near the best of the specialists in training.
Hi Nasir – I did exactly the same house job as you 2 years earlier and your description of the role is strikingly familiar. Myself and the other junior doctors were told in 1985 that most of the haemophiliacs were already HIV positive then and my understanding was they were being or had been informed. I also assumed as a very junior doctor that the situation was irretrievable as the insult was already done. We didn’t look after children so avoiding “potential new cases” was taken care of elsewhere beyond my knowledge. So if any consolation you didn’t inflict this on this group of patients and nor did I – it had already happened.
I would also state that one of my very close friends and an Orthopaedic Surgeon died of CJD in the 90s after receiving virus laden growth hormone as a chid in the 70’s . The infected risk of the growth hormone ( sourced from the US) was also concealed by researchers as proven in the Court of Appeal. There was an appeal as the initial case was found against the claimants families despite the clear fact the programme could have and should have been stopped as the risk was known.
There seemed to be different standards/ beliefs in the 70/80s as regards risk/benefit of viruses in medicinal products. Sad.
Good to hear from you Graeme – Very sorry to hear about your friend. I was certainly aware that at least 90% of our Hemophilia patients were HIV-Positive but there still seemed to be a lot of unknown unknowns like the non-A non-B Hepatitis and of course CJD which you mentioned. Take care Graeme.
There was indeed a lot of pressure from patients and activist groups for patients to receive these treatments without full discussion of the risk factors – a situation which continues to this day in some treatment areas : and if you are reluctabt to give it, patients will go off and pay privately for it with less questions asked than we would ask, and less concern for consequences, as long as they can sell it now, and as long as the patients can obtain the treatment they want right now, without barriers from the doctors like ‘discussing the benefits and risks’ They just don’t care until they have an adverse effect.
Thank you for this really powerful reflection, Nasir.
We deal with moral injury on a daily basis – and we all strive to live with it. And sometimes it’s hard to know when to accept and when to say No.
But we are mostly trying our best x
The timescale involved since the 1970s is sickening. How long do processes take in Britain: half a century: pathetic, and
lagging behind investigations and positive changes made in other countries so that patients got better treatments sooner.
Underfunding of health matters and cheap imports bear some,all responsibility; and who are the NHS and politicians (who
are still alive after all this time) who will admit their failures in responsibility and continued covering-up. Also, they try to place some of the blame onto coal-face doctors who work hard to do a decent job in dire situations: even blaming the occasional dead professor (Coombs?) who is no longer alive to give their defence of their role in this scandal: tragic. Also the gestation period, as stated in this article, of these types of inquiry: 5 years is abysmal: those who lead in these matters, should learn to work at the same speed and with the same workload , as GPs and hospital doctors. Half a century, and many infected patients and their loved ones still awaiting appropriate compensation for all this, a bit like the necessary compensations needed by those postmasters and postmistresses impacted by the cover-ups and errors in the Post Office scandal; yes, another national scandal, and many still awaiting proper payments for the iniquities of governments, and of high-flyer executives, of underfunding and of cover-ups. What about some compensation for our doctors affected by the serious moral injury too?
Speed up the compensations now, for all impacted; or, very sadly, will this take another half a century for people to be rightly
paid and proper funding for all health matters to occur in Britain? Surely not. On balance, 14 years of nonsense, time for a change of government: so use your vote to help the NHS and all our population on 4th July, yes it’s soon. Bye bye R Sanuk.
When doctors are given the proper tools (and blood products), as well as increased funding, they will do the proper job.
I too worked at the RVI on a surgical ward in 1985. This ward also dealt with any patient t’a with haemophilia who needed surgery. As house officers we were tasked with administering factor VIii to patients pre surgery.
We were told to wear double gloves, masks and eye protection but were not really aware at that stage what the issues and problems were. I have also been thinking about this a lot recently. I also worked in this job alongside someone who became an orthopaedic consultant who died of CJD. As Graeme Wilkes has outlined above this was probably avoidable too.